Professor Eila Watson

Approximately 5,700 people are diagnosed with myeloma each year in the UK. The standard of care is to receive an autologous stem cell transplant after completion of induction therapy. There are no specific dietary recommendations for people with myeloma, however they are at risk of malnutrition due to symptoms and side effects of treatments. This report describes the journey of a 73-year-old male diagnosed with immunoglobulin A (IgA) lambda myeloma in April 2021. The patient lost 23% of his body weight during 6 months of systemic anti-cancer treatment (SACT), resulting in postponing his transplant twice due to reduced fitness. This report describes an effective, although late, multidisciplinary intervention which was successful for the patient who managed to reestablish a healthy weight and good quality of life. The patient received his transplant in January 2023. This case highlights two important aspects of patient care that should not be underestimated in dietetic clinical practice: early screening and multidisciplinary collaboration. Monitoring the nutritional status of patients and providing early nutrition support can prevent hospital admissions, treatment delays and reduce the associated costs. Multidisciplinary teamwork can improve patient care and clinical outcomes, and it is fundamental to strengthen communication and collaboration among clinical disciplines.

Background: In  oestrogen-  receptor  positive  breast  cancer,  daily  oral  adjuvant  endocrine therapy (ET) for at least 5 years significantly reduces risks of recurrence and breast cancer- specific mortality. However, many women are poorly adherent to  ET.  Development  of  effective  adherence  support  requires  comprehensive  understanding of influences on adherence. We undertook an umbrella review to identify determinants of ET adherence.Methods: We  searched  PubMed,  Embase,  CINAHL,  PsycINFO,  Cochrane  and  PROSPERO  (inception  to  08/2022)  to  identify  systematic  reviews  on  factors  influencing  ET  adherence.  Abstracted  determinants  were  mapped  to  the  World  Health Organization's dimensions of adherence. Reviews were quality appraised and overlap assessed.Results: Of  5732  citations  screened,  17  reviews  were  eligible  (9  quantitative  primary  studies;  4  qualitative  primary  studies;  4  qualitative  or  quantitative  studies) including 215 primary papers. All five WHO dimensions influenced ET non-  adherence:  The  most  consistently  identified  non-  adherence  determinants  were  patient-  related  factors  (e.g.  lower  perceived  ET  necessity,  more  treatment  concerns,  perceptions  of  ET  ‘cons’  vs.  ‘pros’).  Healthcare  system/healthcare  professional-  related  factors  (e.g.  perceived  lower  quality  health  professional  interaction/relationship)  were  also  important  and,  to  a  somewhat  lesser  extent,  socio-  economic  factors  (e.g.  lower  levels  of  social/economic/material  support).  Evidence  was  more  mixed  for  medication-  related  and  condition-  related  factors,  but  several  may  be  relevant  (e.g.  experiencing  side-  effects,  cost).  Potentially  modifiable  factors  are  more  influential  than  non-  modifiable/fixed  factors  (e.g.  patient characteristics).

Objective: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors.

Methods: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n=144), patient interviews (n=30), 7 workshops with patients (n=25) and caregivers (n=3) and 5 workshops with health professionals (n=21).

Results: The intervention (‘ACT now & check-it-out’) comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time.

Conclusions: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients.

Practice Implications: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.

Introduction

High-quality pre-registration student nurse training and development is integral to developing a sustainable and competent global nursing workforce. Internationally, student nurse recruitment rates have increased since the onset of the COVID-19 pandemic; however, attrition rates for student nurses are high. During the pandemic, many student nurses considered leaving the programme due to academic concerns, feeling overwhelmed, and doubting their clinical skills. Little was known about the extent to which nursing education prior to COVID-19 had prepared students for their role in managing the healthcare crisis or the impact on their resilience. Thus, this study aimed to explore how the COVID-19 pandemic impacted on the resilience levels of student nurses across the United Kingdom.

Methods

Data were collected as part of a multi-site qualitative study named ‘COV-ED Nurse’ and involved pre-placement surveys, placement diaries, and post-placement interviews with nursing students. Student nurse participants were recruited from across the United Kingdom, from all years of study, and from all four nursing branches: children, adult, mental health, and learning disabilities. Participants were asked to complete a pre-placement survey that collected demographic details and information about their placement expectations. They were also asked to record a weekly audio-visual or written diary to describe their placement experiences, and, on completion of their placements, students were interviewed to explore their experiences of this time. Data were thematically analysed using the Framework Approach. Ethical approvals were obtained.

Results

Two hundred and sixteen students took part in the wider study. The current study involved a subset of 59 students’ data. Four main themes were identified: ‘coping with increased levels of acuity’, ‘perceived risks of the pandemic’, ‘resilience when facing uncertainty and isolation’, and ‘the importance of coping mechanisms and support structures.’

Discussion

From this study, we have generated insights that can be applied to nursing research, education, policy, and practice and identified the wide-ranging impact that the COVID-19 pandemic had on student nurses and their abilities to remain resilient in an unstable environment. The value of communication and support networks from a wide range of sources was highlighted as key to navigating many uncertainties. In addition, the extent to which students were able to navigate their personal and professional roles and identities influenced their ability to cope with and continue along their training pathways.

Alcohol is a causal factor in about 10% of breast cancer (BCa) cases, but awareness of this link is low. This study explored how to raise awareness and inform the development of an intervention using the COM-B model (capability, opportunity, motivation, behavior) framework. Eight online focus groups were conducted with 36 participants (6 expert stakeholders, and 30 women aged 40-65). Participants reflected on a package of information about alcohol and BCa and discussed how to impart this information and encourage women to reduce drinking.  Thematic analysis of focus group transcripts was undertaken. Three themes were identified: understanding ineffective messaging; transitions and challenges; and message acceptability. Current health information about alcohol was perceived as judgmental and BCa was put down to chance. Mid-life consisted of many challenges that could lead to increased consumption, but menopause transition may be a key moment for alcohol reduction.  Barriers and enablers to communicating risk information and encouraging alcohol reduction were mapped onto the COM-B model. Psychological capability (relating to knowledge), social opportunity (in the form of social pressure) and automatic motivation (relating to drinking to cope) were barriers to behavior change.  These will be targeted in an alcohol reduction intervention. It is important to tailor information to women’s experiences, taking into account the social benefits of drinking, and encourage the development of healthy coping strategies. Acceptable intervention messages may include personal stories, clear statistics, and suggest healthy alternatives to drinking. It is vital that messaging does not appear judgmental or patronizing. 

Objective: Oropharyngeal cancer, a type of head and neck cancer (HNC), the incidence of which is increasing, often affects younger patients than traditional HNC, having distinct psychosocial consequences. Treatment side effects mean many rely on informal caregivers following (chemo)radiotherapy. The purpose of this review was to describe current understanding of the psychosocial experiences of these caregivers in the post-treatment phase.

Methods: A systematic search for relevant studies between January 2010 and October 2022 in three electronic databases (CINAHL, MEDLINE and PsycINFO) was followed by citation searching. Inclusion criteria were developed to ensure studies explored caregivers' experiences during the post-treatment phase following oropharyngeal cancer (chemo)radiotherapy. Thematic analysis informed by the 'Cancer Family Caregiving Experience Model', identified stressors, appraisals and responses. Themes evolved through the synthesis of recurrent concepts across the studies and a narrative of psychosocial experiences and their impact upon caregiver well-being was developed.

Results: Fifteen HNC papers which included exploration of the psychosocial experiences of oropharyngeal cancer caregivers following (chemo)radiotherapy were selected. Findings were synthesised to develop five themes: an emotional struggle, supporting nutrition, altered lifestyles, changes within relationships and support needs.

Conclusions: The completion of (chemo)radiotherapy signalled a transition for these caregivers as they undertook burdensome responsibilities. Experiences indicated that preparation for the role, assessment of needs, and targeted support is required. Additionally, caregivers' recognition by healthcare professionals as caring partners could help moderate this demanding experience.

Background: Increasing healthy behaviours (e.g. physical activity) can improve cancer survivors’ quality of life. Renewed is a digital intervention developed to provide behaviour change advice with brief healthcare practitioner support. A three-arm randomised controlled trial (Renewed, Renewed withsupport or a control condition) showed that those in the supported arm had significantly larger increases in quality of life at 12 months. Furthermore, prostate cancer survivors in the supported arm had greater improvements in quality of life compared to other cancer survivors. This study explored participants’ experiences using Renewed to understand how it might have worked and why it provided greater benefit for prostate cancer survivors and those in the supported arm.

Methods: Thirty-nine semi-structured telephone interviews with cancer survivors’ (breast, colorectal, prostate) from the Renewed trial explored their experiences of using Renewed and their perceptions of the intervention. Data were analysed using inductive thematic analysis.

Results: Some participants only used Renewed modestly but still made behaviour changes. Barriers to using Renewed included low perceived need, joining the study to advance scientific knowledge or ‘to give back’, or due to perceived availability of support in their existing social networks. Prostate cancer survivors reported less social support outside of Renewed compared to participants with other cancers.

Conclusion: Renewed may support healthy behaviour changes among cancer survivors even with limited use. Interventions targetting individuals who lack social support may be beneficial.

Implications for cancer survivors: Cancer survivors’ experiences may inform the development of digital interventions to better serve this population.

Problem identification.

Anxiety and depression are more prevalent in hematological cancer patients who experience unpredictable illness trajectories and aggressive treatments compared to solid tumor patients. Efficacy of psychosocial interventions targeted at blood cancer patients is relatively unknown. This systematic review examined trials of physical health and psychosocial interventions intending to improve levels of anxiety, depression, and/or quality of life in adults with hematological cancers.

Literature search.

PubMed and CINAHL databases were used to perform a systematic review of literature using PRISMA guidelines.

Data evaluation/synthesis.

Twenty-nine randomized controlled trials of 3232 participants were included. Thirteen studies were physical therapy, nine psychological, five complementary, one nutritional and one spiritual therapy interventions. Improvements were found in all therapy types except nutritional therapy.

Conclusions.

Interventions that included personal contact with clinicians were more likely to be effective in improving mental health than those without.

Implications for psychosocial oncology.

Various psychosocial interventions can be offered but interactive components appear crucial for generating long-standing improvements in quality of life, anxiety and depression.

Background: Breast cancer is the most common cancer in women worldwide. Approximately 80% of breast cancers are oestrogen receptor positive (ER+). Patients treated surgically are usually recommended adjuvant endocrine therapy (AET) for 5-10 years. AET significantly reduces recurrence, but up to 50% of women do not take it as prescribed.

Objective: To co-design and develop an intervention to support AET adherence and improve health-related quality-of-life (QoL) in women with breast cancer.

Methods:  Design and development of the HT&Me intervention took a person-based approach and was guided by the Medical Research Council framework for complex interventions, based on evidence and underpinned by theory. Literature reviews, behavioural analysis, and extensive key stakeholder involvement informed ‘guiding principles’ and the intervention logic model. Using co-design principles, a prototype intervention was developed and refined. 

Results: The blended tailored HT&Me intervention supports women to self-manage their AET. It comprises initial and follow-up consultations with a trained nurse, supported with an animation video, a web-app and ongoing motivational ‘nudge’ messages. It addresses perceptual (e.g. doubts about necessity, treatment concerns) and practical (e.g. forgetting) barriers to adherence and provides information, support and behaviour change techniques to improve QoL. Iterative patient feedback maximised feasibility, acceptability, and likelihood of maintaining adherence; health professional feedback maximised likelihood of scalability.

Conclusions: HT&Me has been systematically and rigorously developed to promote AET adherence and improve QoL, and is complemented with a logic model documenting hypothesised mechanisms of action. An ongoing feasibility trial will inform a future randomised control trial of effectiveness and cost-effectiveness.

Objectives: The psychological impact of a haematological malignancy is well documented.  However, few studies have assessed the provision of psychological support to people with these diagnoses. This study explores the extent and nature of psychological support for people diagnosed with haematological cancer to inform future service provision.

Design: This study consisted of an online survey with healthcare professionals (Phase 1) and qualitative interviews with patients (Phase 2) and key health professionals (Phase 3).  A descriptive analysis of survey data and thematic analysis of interviews were conducted

Participants:  Two hundred health professionals practising in England completed the survey.  Twenty-five interviews were conducted with people diagnosed with haematological cancer in the past three years, and ten with key health professionals, including haematologists, cancer nurse specialists and psychologists were conducted.

Primary Outcome Measures: Level of psychological assessment undertaken with people with haematological cancer, and level and nature of psychological support provided.

Results:  Less than half(47.3%) of survey respondents strongly agreed/agreed that their patients were well supported in terms of their psychological well-being and approximately half (49.4%) reported providing routine assessment of psychological needs of patients, most commonly at the time of diagnosis or relapse. Patients described their need for psychological support, their experiences of support from health professionals and their experiences of support from psychological therapy services.  There was considerable variation in the support patients described receiving.  Barriers to providing psychological support reported by health professionals included time, skills, resources and patient barriers. Most doctors(85%) and 40% of nurse respondents reported receiving no training for assessing and managing psychological needs.   

Conclusions: Psychological well-being should be routinely assessed, and person-centred support should be offered regularly throughout the haematological cancer journey.  Greater provision of healthcare professional training in this area and better integration of psychological support services into the patient care pathway is required.

In oncological outpatient settings, patients often require nutritional support after they have developed malnutrition. A delayed dietetic referral can lead to increased difficulties in providing therapies and surgery, and to poorer patient outcomes. The audit described in this article aimed to assess the frequency and completeness of patient record documentation of anthropometric measurements in a day treatment unit (DTU) in a single cancer centre in the UK. The underlying goal was to improve anthropometry monitoring procedures to ensure that documentation is sufficient to indicate weight loss and, hence, allow timely referrals for nutrition support. The results show that, for over 80% of patients, it was not possible to identify a weight trend between the latest two treatments received at the hospital. The audit findings highlight the need to improve malnutrition monitoring and to ensure patient records contain updated and accurate anthropometric measurements in order to facilitate medical staff to recognise early malnutrition risk and refer for appropriate nutritional support when needed.

Objectives: Standardised reporting of patient and public involvement (PPI) in research studies is needed to facilitate learning about how to achieve effective PPI.  The aim of this evaluation was to explore the impact of PPI in a large UK study, the Life After Prostate Cancer Diagnosis (LAPCD) study, and to explore the facilitators and challenges experienced.

Design:  Mixed methods study using an online survey and semi-structured interviews. Survey and topic guide were informed by systematic review evidence of the impact of PPI and by realist evaluation.  Descriptive analysis of survey data and thematic analysis of interview data were conducted. Results are reported using the GRIPP2 reporting guidelines.

Setting: Life After Prostate Cancer Diagnosis (LAPCD) study, a UK-wide patient-reported outcomes study

Participants: User Advisory Group (UAG) members (n=9) and researchers (n=29) from the LAPCD study

Results: Impact was greatest on improving survey design and topic guides for interviews, enhancing clarity of patient facing materials, informing best practice around data collection, and ensuring steering group meetings were grounded in what is important to the patient. Further impacts included ensuring patient focussed dissemination of study findings at conference presentations and in lay summaries.

Facilitating context factors included clear aims, time to contribute, confidence to contribute, and feeling valued and supported by researchers and other UAG members.  Facilitating mechanisms included embedding the UAG within the study as a separate work-stream, allocating time and resources to the UAG reflecting the value of input, and putting in place clear communication channels.  Hindering factors included time commitment, geographical distance, and lack of standardised feedback mechanisms.

Conclusion: Including PPI as an integral component of the LAPCD study and providing the right context and mechanisms for involving the UAG helped maximise the programme’s effectiveness and impact.  

Purpose: Current policy in the United Kingdom (UK) recommends that people with breast cancer (PWBC) are managed in follow-up pathways that suit their needs. With an increasing trend towards patient-initiated follow-up (PIFU) pathways for PWBC, this study conducted qualitative research exploring PWBC’s experiences of a nurse-led PIFU service (termed ‘Supported Early Discharge’) to inform how PIFU pathways could be optimised.

Method: PWBC on a PIFU pathway were recruited from two UK hospitals (one large cancer centre, one district general hospital) as part of a wider mixed-methods study (N=118). Following completion of a series of surveys, a purposive subsample of 20 women were interviewed in-depth about their experiences. Thematic analysis was conducted. 

Results: The majority of participants described positive views towards being on PIFU; however a significant minority struggled with uncertainties and difficulties related to: accessing ongoing care and support; performing breast self-examination (BSE); managing ongoing treatment side-effects; and fear of recurrence. Themes included: self-efficacy to manage own health; barriers and facilitators to help-seeking on a PIFU pathway; effective information sharing about side effects; preferences for personalised care; emotional wellbeing on PIFU- influences on fear of recurrence. A novel conceptual model is presented that highlights influences on self-management during PIFU.

Conclusions: Findings highlight ways in which PIFU pathways could be further optimised through greater and more effective education on BSE and recognising signs of recurrence, information on when and how to seek further help with any problems, targeted provision of psychological support, and clearer signposting to support for ongoing side-effects.

Objective

The UK incidence of oropharyngeal cancer has risen sharply over the last 30 years with an increase in human papillomavirus (HPV) associated diagnoses, most prevalent in younger, working age populations. This meta-ethnography explores the psychosocial needs of HPV+ve oropharyngeal cancer patients during early recovery following (chemo)radiotherapy.

Methods

Meta-ethnography methods were used, based on the approach of Noblit and Hare. Systematic searches for relevant qualitative studies were conducted in five electronic databases (MEDLINE, PubMed, CINAHL, PsycINFO and Cochrane database) between 2010 and 2021, followed by citation searching.

Results

Twenty-three papers exploring the psychosocial needs of HPV+ve oropharyngeal cancer patients after treatment were included. Findings were synthesised to develop five constructs: ‘gaps in continuity of support from healthcare professionals’ reflecting unmet needs; ‘changes to self-identity’ revealing the comprehensive disruption of this disease and treatment; ‘unrealistic expectations of recovery’ highlighting the difficulty of preparing for the impact of treatment; ‘finding ways to cope’ describing the distinct complexity of this experience; and ‘adjusting to life after the end of treatment’ exploring how coping strategies helped patients to regain control of their lives.

Conclusions

Completing (chemo)radiotherapy signalled a transition from hospital-based care to home-based support, challenging patients to address the constructs identified. An unexpectedly difficult and complex recovery meant that despite a favourable prognosis, poor psychosocial well-being may threaten a successful outcome. The provision of tailored support is essential to facilitate positive adjustment.

Background.

South Asians make up the largest ethnic minority group in England and Wales.  Yet this group is underrepresented in some programmes to promote health, such as cancer screening.  A challenge to addressing such health disparities is the difficulty of recruiting South Asian communities to health research. Effective recruitment requires the development of participants’ knowledge about research and their trust.  Researchers also need to increase their cultural understanding and to think about how they will communicate information despite language barriers.  This article describes the use of an organogram, informed by social network analysis, to identify the community contacts likely to encourage participation of South Asian adults (aged 50 to 75 years) in interviews to identify the facilitators of home bowel cancer screening.

Methods.

We developed an organogram which represented the directional relationships between organizations and key informants against the level of recruitment success to visualize where networking engaged participants. Primary data were recruitment records (February 2019-March 2020).

Results

The majority of participants were recruited from faith centres. The topic of bowel cancer was a barrier for some, but recruitment was more successful with the advocacy of leaders within the South Asian communities. Visualizing community networks helped the research team to understand where to concentrate time and resources for recruitment.

Conclusions.

The organizational chart was easy to maintain and demonstrated useful patterns in recruitment successes.

Policy summary.

An organogram can provide a practical tool to identify the best strategies and community contacts to engage South Asian participants in studies to inform policy on health promotion activities such as cancer screening. 

Background: Primary care has an important role in supporting cancer survivors, yet support is limited because of practitioners’ perceived lack of expertise and time. A digital intervention for cancer survivors could provide an efficient way for primary care staff to support cancer survivors without the need to accumulate expertise and skills to help patients make behaviour changes, providing very brief support alongside this could maximise adherence to the digital interventions. Renewed is a digital intervention combining online behaviour change advice with brief healthcare practitioner support from a nurse or healthcare assistant. Knowledge about the views and experiences of primary care staff providing support alongside a digital intervention for cancer survivors is sparse, limiting understanding of the acceptability and feasibility of this type of intervention.

Objective: To explore Supporters’ experiences of providing support to cancer survivors using Renewed, to understand potential barriers and facilitators to implementation of Renewed in practice, and investigate strengths and weaknesses of the intervention from the perspective of healthcare professionals.

Methods: This was a qualitative process evaluation, nested within a large trial evaluating Renewed. Twenty-eight semi-structured telephone interviews were conducted with nurses and healthcare assistants. Data were analysed using inductive thematic analysis.

Results: Four themes were developed during analysis which reflected factors that Supporters identified as hindering or enabling them to provide support alongside Renewed Online (Themes: Renewed Online as an acceptable digital tool with some improvements; confidence to enact the Supporter role; practicalities of delivering support alongside a digital intervention; and managing a patient-led approach). The analysis suggests that Supporters perceived that a digital intervention such as Renewed would be beneficial to support cancer survivors in primary care, and fit within current practices. However, barriers to providing support alongside a digital intervention were also identified, including concerns about how to facilitate rapport building and, in a minority, concerns about employing a non-directive approach, in which the majority of advice and support is provided through a digital intervention, with brief additional support provided by primary care staff.

Conclusion:  These findings add to the literature about how best to provide support alongside digital interventions, suggesting that whilst most practitioners cope well with a non-directive approach, a minority require more training to feel confident implementing this. This study suggests that barriers to providing formal support to cancer survivors in primary care could be successfully overcome with an approach like Renewed, where a digital intervention provides most of the support and expertise, and healthcare practitioners provide the additional brief human support to maximise engagement. Strategies to maximise the chances of successful implementation for this type of intervention are discussed.

​​​​​​​Aims and objectives:

To explore patients’ and healthcare professionals’ views and experiences of a pre- and post-operative rehabilitation intervention (SOLACE) for patients undergoing surgery for early stage lung cancer.

Background:

Considerable post-operative complications can occur after surgery. A specialist lung cancer service (SOLACE) was developed to optimise health and fitness levels prior to and following lung cancer resections, as well as reducing morbidity and mortality, and improving the physical and psychological wellbeing of patients.  

Design:

The design was an exploratory, descriptive qualitative interview study.

Methods:

Seventeen lung cancer patients and eight healthcare professionals were recruited from a large teaching hospital in South England. Data was collected through semi-structured telephone and face to face interviews. Transcribed interview data was analysed thematically. The COREQ checklist was used to report on the study process.

Results:

The SOLACE service was positively perceived by patients and healthcare professionals. Patients valued the provision of tailored support/advice and peer support and reported benefits to their health and wellbeing. Barriers to patient uptake of the classes included time constraints, motivation and access for patients who lived at a distance.

Conclusions:

There is benefit in providing a personalised approach through a pre and post-operative rehabilitation service for lung cancer patients. Virtual support may address equality of access to service for those who live at a distance from the hospital.

Relevance to clinical practice:

Introduction of a pre and post-operative rehabilitation service provided by specialist peri-operative rehabilitation nurses and practitioners can yield positive outcomes for patients undergoing surgical treatment of early stage lung cancer. Engagement of key healthcare professionals, consideration of virtual follow up services and making patients aware of services could maximise patient uptake. Further consideration is needed of the best way to promote patient self-management and long-term continuation of patient rehabilitation in the community.

Keywords: lung cancer, pre-habilitation, rehabilitation, patient experience, surgery, qualitative

Objectives
Individuals who have survived cancer may benefit from dietary modifications to improve quality of life and future health outcomes. The aim of this study was to explore dietary habits and experiences of nutritional support in patients with a cancer diagnosis who have received radiotherapy to the pelvic area.

Methods
A mixed-methods approach was used. Individuals diagnosed with a pelvic cancer (anal, bladder, rectal, and cancers of the reproductive organs), either undergoing or having completed pelvic radiotherapy 6 to 24 mo previously, were invited to participate in a postal survey. A purposive subsample was also invited to take part in telephone interviews. Thematic analysis of interview data was undertaken and integrated with data from quantitative analysis.

Results
The survey was completed by 254 (38%) respondents. Two-thirds of respondents (170) reported dietary changes since diagnosis; most notable changes were reduction of sugary foods (48%) and alcohol (41%). Receipt of support from the health care team was significantly associated with dietary change (odds ratio, 3.26; 95% confidence interval, 1.58–6.75); however, only 43% (108) had received dietary support from the health care team. Of the respondents, 68% (171) said they would like to receive additional dietary support. The effect of the condition on diet was highlighted in the theme “Impact of diagnosis and treatments on dietary choices.” Self-management of disease was influenced by personal resources, social resources, comorbidities and disabilities, influence of work, regaining normality, and barriers to dietary changes.

Conclusion
Lack of routine provision of nutritional care to patients after a cancer diagnosis and patient interest in this area highlighted unmet needs in managing diet-related problems and leading a healthy future lifestyle.

Background: Men with prostate cancer (PCa) often experience sexual dysfunction following diagnosis and treatment, yet little is known about the support they receive to deal with this.

Aim: To explore men's experiences of support for sexual dysfunction following PCa diagnosis.

Methods: This study included a U.K.-wide survey of men 18-42 months post-diagnosis of PCa, identified through cancer registries. The survey measured sexual function and the extent to which men perceived sexual dysfunction to be a problem (Expanded Prostate Cancer Index Composite-26), access to and experience of medications, devices, and specialist services for sexual dysfunction, and included a free-text question for further comments. Analysis focussed on men who reported poor sexual function, which they considered a moderate or big problem. Descriptive statistics explored the characteristics of men offered intervention and those that found this helpful. Free-text responses were analyzed using thematic analysis.

Outcome: The main outcome of this study was to assess access to and experience of medications, devices, and specialist services for sexual dysfunction.

Results: 39.0% of all survey respondents (13,978/35,823) reported poor sexual function, which they considered a moderate or big problem. 51.7% of these men were not offered any intervention to aid sexual functioning. 71.9% of those offered an intervention reported trying it, of whom 48.7% found the intervention helpful. Men treated with surgery or brachytherapy were most likely to be offered an intervention. Medication was the most commonly offered intervention and 39.3% of those who tried medication found this helpful. Although offered less often, approximately half of the men who tried devices or attended specialist services found the intervention helpful. Free-text responses indicated that barriers to accessing support included inadequate information and support from healthcare professionals, embarrassment, negative views about treatment options, concerns about side effects and safety, and inconsistencies between secondary and primary care. Barriers to continuing use included limited effectiveness of treatments, inadequate ongoing support, and funding constraints. Drivers of sexual recovery included patient proactivity and persistence with trying different treatment options and ongoing support from health professionals.

Clinical implications: There is an urgent need to ensure that all men are offered, and have equal access to, sexual care support, with referral to specialist services when required.

Strengths & limitations: This study presents data from a large, U.K.-wide, population-based study of men with PCa and includes quantitative and qualitative findings. The possibility of non-response bias should, however, be considered.

Conclusion: There are significant shortcomings in the support offered to U.K. men with sexual dysfunction following diagnosis and treatment for PCa which need to be addressed.

Objectives. To explore UK clinicians’ beliefs and behaviours around recommending e-cigarettes as a smoking cessation aid for patients with cancer.

Design. Cross-sectional online survey.

Setting. England, Wales, Scotland and Northern Ireland.

Participants. Clinicians involved in the care of patients with cancer.

Primary and secondary outcomes. Behavioural Change Wheel capability, opportunity and motivation to perform a behaviour, knowledge, beliefs, current practice around e-cigarettes and other smoking cessation practices.

Method. Clinicians (n=506) completed an online survey to assess beliefs and behaviours around e-cigarettes and other smoking cessation practices for patients with cancer. Behavioural factors associated with recommending e-cigarettes in practice were assessed.

Results. 29% of clinicians would not recommend e-cigarettes to patients with cancer who continue to smoke. Factors associated with recommendation include smoking cessation knowledge (OR 1.56, 95% CI 1.01 to 2.44) and e-cigarette knowledge (OR 1.64, 95% CI 1.06 to 2.55), engagement with patients regarding smoking cessation (OR 2.12, 95% CI 1.12 to 4.03), belief in the effectiveness of e-cigarettes (OR 2.36 95% CI 1.61 to 3.47) and belief in sufficient evidence on e-cigarettes (OR 2.08 95% CI 1.10 to 4.00) and how comfortable they felt discussing e-cigarettes with patients (OR 1.57 95% CI 1.04 to 2.36).

Conclusion. Many clinicians providing cancer care to patients who smoke do not recommend e-cigarettes as a smoking cessation aid and were unaware of national guidance supporting recommendation of e-cigarettes as a smoking cessation aid.

Introduction: This study aimed to review diet and nutrition information and support needs of cancer patients who receive pelvic radiotherapy to inform the development of interventions to improve this area of care.
Methods: The systematic review followed the PRISMA guidelines. Six electronic databases were searched for peer-reviewed studies of any design that assessed diet and nutrition needs after a pelvic cancer diagnosis. Narrative synthesis was used to integrate findings. Results: Thirty studies (12 quantitative, 15 qualitative, 3 mixed-methods) were included. Four themes, “content of dietary information”; “sources of information”. “sustaining dietary change”; and “views on the role of diet post-treatment”, summarised evidence about provision of nutritional guidance following diagnosis, but also contrasting views about the role of diet post diagnosis. Qualitative studies contributed considerably more to the synthesis, compared to quantitative studies. Included studies were of moderate to good quality; selection bias in quantitative studies and poor evidence of credibility and dependability in qualitative studies were highlighted. Conclusion: There is some evidence of lack of nutrition support in pelvic cancer survivors, but methodological limitations of included studies may have had an impact on the findings. Future, prospective studies that focus on diet and nutrition needs post-diagnosis are warranted to improve care.

Purpose. Due to recent treatment advances, men are increasingly living longer with advanced prostate cancer (PCa). This study sought to understand men’s experiences of living with and adjusting to advanced hormone-responsive PCa and how this influenced their quality of life (QoL), in order to highlight how support could be optimized.

Methods. Participants were recruited through a UK wide survey—the ‘Life After Prostate Cancer Diagnosis’ study. In-depth telephone interviews were conducted with 24 men (aged 46–77 years) with advanced (stage IV) hormone-responsive PCa diagnosed 18–42 months previously. Thematic analysis was undertaken using a framework approach.

Results. Most participants perceived their QoL to be relatively good, which was influenced by the following factors (enablers to ‘living well’ with PCa): a sense of connectedness to others, engagement in meaningful activities, resources (social, cognitive, financial), ability to manage uncertainty, utilization of adjustment strategies and support, communication and information from health professionals. Barriers to ‘living well’ with PCa were often the converse of these factors. These also included more troublesome PCa-related symptoms and stronger perceptions of loss and restriction.

Conclusions. In our study, men living with advanced hormone-responsive PCa often reported a good QoL. Exploring the influences on QoL in men with advanced PCa indicates how future interventions might improve the QoL of men who are struggling. Further research is required to develop and test interventions that enhance QoL for these men.

Purpose: To explore the experiences of men with prostate cancer identified as having psychological distress and to identify factors influencing distress.

Participants and setting: 28 men with prostate cancer diagnosed 18-42 months earlier, identified as having psychological distress on survey measures. 

Methodologic approach: Semi-structured telephone interviews were conducted. Thematic analysis using a Framework approach was used. 

Findings:  Men with psychological distress had strong perceptions of ‘loss’ towards a) self (identity, sexuality/masculinity, self-confidence), b) function (physical, activities), c) connection (relational, social, community) and d) control (future, emotional). Psychological vulnerability appeared heightened in particular groups of men. Maladaptive strategies of emotional concealment, help-seeking avoidance and withdrawal appeared to contribute to distress. 

Implications for nursing: Distress in men with prostate cancer is multifaceted. Men with distress should be identified and offered support. Nursing and/or peer-led interventions are required.   

Knowledge Translation: 

1. A significant minority of men with prostate cancer report distress 18-42 months following diagnosis. Screening tools for psychological difficulties may help identify men in need of further support.

2. The author’s conceptual model highlights pre-existing and treatment related factors, as well as maladaptive coping strategies influencing distress. Greater support with restoring self-identity and confidence is needed. 

3. Nurse-led patient education and information on managing psychological and physical concerns, as well as sign-posting to peer support, community or online support groups is required. 

Objective: Clinical options for managing non-metastatic prostate cancer (PCa) vary. Each option has associated side-effects leading to difficulty in decision-making. This study aimed to assess the relationship between patient involvement in treatment decision-making and subsequent decision regret (DR), and quantify the impact of health-related quality of life (HRQL) outcomes on DR.
Methods: Men living in the United Kingdom, 18-42 months post-diagnosis of PCa were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC-26), EQ-5D-5L and an item on involvement in treatment decision-making.  Multivariable ordinal regression was utilised with DR categorised as none, mild or moderate/severe regret. 
Results: 17,193 men with stage I-III PCa completed the DRS: 36.6% reported no regret, 43.3% mild regret and 20.0% moderate/severe regret. The odds of reporting DR were greater if men indicated their views were not taken into account (OR=6.42, 95%CI 5.39-7.64) or were involved ‘to some extent’ in decision-making (OR=4.63, 95%CI 4.27-5.02), compared to men who were ‘definitely’ involved.  After adjustment, including for involvement, men reporting moderate/big problems with urinary, bowel or sexual function were more likely to experience regret compared to men with no/small problems.  Better HRQL scores were associated with lower levels of DR. 
Conclusions: This large-scale study demonstrates the benefit of patient involvement in treatment decision-making for non-metastatic PCa.  However, men experiencing side-effects and poorer HRQL report greater DR.  Promoting engagement in clinical decision-making represents good practice and may reduce the risk of subsequent regret.

Purpose. There are known associations between treatment of prostate cancer (PCa) involving Androgen Deprivation Therapy (ADT) and psychological and physical side effects. We investigate the associations between cancer-related symptoms, health-related quality of life (HRQL), and poor psychological outcomes in men whose treatment for PCa involved ADT.

Methods. A cross-sectional postal questionnaire was administered to UK men 18–42 months post diagnosis of PCa. Men completed items on functional outcomes using the Expanded Prostate Cancer Index Composite (EPIC-26), EuroQol-5D (EQ-5D), and the European Organisation for Research and Treatment of Cancer (EORTC) Fatigue subscale. Psychological outcomes (mental well-being and psychological distress) were assessed using the Short Warwick–Edinburgh Mental Well-being Scale (SWEMWBS) and the Kessler 6-item scale (K6), respectively. Associations between explanatory variables and psychological outcomes were assessed using stepped logistic regression.

Results. 13,097 men treated with ADT completed a questionnaire. A minority of men reported poor mental well-being (15.5%) or severe psychological distress (6.6%). After controlling for sociodemographic and clinical variables, reporting clinically significant fatigue was strongly associated with severe psychological distress (OR 9.92; 95% CI 7.63 to 12.89) and poor well-being (OR 3.86; 95% CI 3.38 to 4.42). All cancer-related symptoms and HRQL variables were associated with both psychological outcomes.

Conclusions. ile the majority of men treated with ADT did not report poor psychological outcomes, a small proportion reported severe problems. Clinically significant fatigue was demonstrated as a possible indicator of poor outcomes. Healthcare systems need to have clear protocols in place which specifically and routinely target psychological distress and fatigue.

Objectives. Patients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer.  This survey aimed to describe their experiences of care and supportive care needs to inform future service provision. Design. Cross-sectional questionnaire survey of pancreatic cancer patients in the UK. Setting. Individuals at any stage along the care pathway were recruited via five NHS sites in the UK, and online, from January to June 2018. Participants. 274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274).  Of 212 providing gender details, 82 were male and 130 female. Ninety percent (192/213) described themselves as White British. Primary Outcome Measures. Experiences of communication and information; involvement in treatment decisions; supportive care needs. Results. Communication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be.   Supportive care needs were greatest in psychological and physical/daily living domains.  49% (108/221) respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease. Conclusions. Patients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appear to be the biggest gaps in care.  Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.

Objective: To explore adjustment strategies adopted by Black African (BA) and Black Caribbean (BC) men in the UK as a response to the impact of PCa diagnosis and treatment effects.
Methods: Men were recruited through the UK-wide ‘Life After Prostate Cancer Diagnosis’ (LAPCD) survey. Telephone interviews were conducted with men (n=14) with BA and BC backgrounds between 18-42 months post-diagnosis. Data were analysed using a Framework approach.  
Results: Most men (n=12) were born outside the UK, were married (n=9) and employed (n=9). Median age was 66 years (range: 55-85). Six overarching themes emerged: a strong reliance upon faith beliefs; maintaining a ‘positive’ front; work as distraction; non-disclosure of diagnosis even amongst family members, influenced by stigma and masculinity concerns; active awareness-raising amongst a minority, and; support-seeking from close community. A few men emphasised a need to ‘pitch’ awareness-raising messages appropriately. Potential links existed between faith beliefs, presenting a positive front, community support-seeking and local awareness-raising.
Conclusion: The provision of patient-centred care requires cultural sensitivity. Interventions that challenge stigma and mens’ reluctance to disclose problems associated with PCa and treatment may encourage help-seeking for symptom support. Research is needed to determine how best awareness-raising messages should be conveyed to black men.  

Objective. To address concerns over the psychological impact of being on a monitoring pathway following prostate cancer (PCa) diagnosis, this study compared the psychological status of men on active surveillance (AS) or watchful waiting (WW) with men on active treatment (AT), and explored psychological adjustment in men on AS/WW. Methods. Cross-sectional survey of UK men diagnosed with PCa 18-42 months previously (n=16,726, localised disease at diagnosis) and telephone interviews with 24 men on AS/WW. Psychological outcomes were measured using two validated scales (Short Warwick-Edinburgh Mental-Well-being Scale; Kessler Psychological Distress Scale). Univariable and multivariable analyses compared outcomes between men on AS/WW and AT. Thematic analysis of interviews was undertaken, informed by a previously developed theory of adjustment to cancer. Results. 3,986 (23.8%) respondents were on AS/WW. Overall, psychological outcomes were similar or better in men on AS/WW compared to those receiving AT (SWEMWBS: Poor well-being; 12.3% AS/WW vs 13.9% AT, adjusted OR=0.86, 95% CI 0.76-0.97; K6: severe psychological distress; 4.6% vs 5.4%, adjusted OR=0.90, 95% CI 0.74-1.08). Interviews indicated most men on AS/WW had adjusted positively. Men with poorer well-being were less able to accept, reframe positively and normalise the diagnosis, described receiving insufficient information and support, and a lack of confidence in their health-care professionals. Conclusions. Most men on AS/WW cope well psychologically. Men making treatment decisions should be given this information. Psychological health should be assessed to determine suitability for AS/WW, and at monitoring appointments. A clear action plan and support from healthcare professionals is important.

Background

More men are living following a prostate cancer (PCa) diagnosis. They may need support to maximize the quality of their survival. Physical and psychological impacts of PCa are widely documented. Less is known about social impacts. We aimed to identify key factors associated with social distress following PCa.

Methods

The Life After Prostate Cancer Diagnosis study is a UK national cross-sectional survey of men 18–42 months post diagnosis of PCa. Men (n = 58 930) were invited to participate by their diagnosing cancer centre including 82% of English NHS Trusts (n = 111) and 100% of all Health Boards in Northern Ireland (n = 5), Scotland (n = 14) and Wales (n = 6). Social distress was measured using the Social Difficulties Inventory (SDI-21), 16 item Social Distress scale with men assigned to ‘socially distressed’/‘not socially distressed’ groups, according to published guidelines. Clinical and sociodemographic variables were collected from self-report and cancer registries.

Results

Response rate 60.8% (n = 35 823) of whom 97% (n = 29 351) completed the Social Distress scale (mean age = 71.2; SD = 7.88). The proportion of ‘socially distressed’ men was 9.4%. Multivariable logistic regression analysis revealed unemployment versus employment (odds ratio (OR): 11.58 [95% CI 9.16–14.63]) and ≥3 co-morbidities versus none (OR: 5.37 [95% CI 4.61–6.27]) as key associations. Others were Androgen Deprivation Therapy, External Beam Radiotherapy in combination with another treatment, age, prior mental health problems and living in a socio-economically deprived area.

Conclusion

Most men following PCa are socially resilient. A simple checklist could help clinicians identify men at risk of social distress.

Purpose: Prostate cancer incidence, treatment and survival rates vary throughout the United Kingdom (UK) but little is known about regional differences in quality of survival. 

Objective: To investigate variations in patient-reported outcomes between UK countries and English Cancer Alliances.

Design, setting and participants: A cross-sectional postal survey of prostate cancer survivors diagnosed 18-42 months previously.

Outcome measurements and statistical analysis: Urinary, bowel, sexual problems and vitality were patient reported using the EPIC-26 questionnaire. General health was also self-assessed. Regional variations were identified using multivariable log-linear regression. 

Results and limitations: 35,823 men responded; 60.8% of those invited. Self-assessed health was significantly lower than the UK average in Wales and Scotland. Respondents reported more urinary incontinence in Scotland, more urinary irritation/obstruction in Scotland and Northern Ireland (NI), poorer bowel function in Scotland and NI, worse sexual function in Scotland, and reduced vitality/hormonal function in Scotland, Wales and NI.

Self-assessed health was poorer than the English average in South Yorkshire and North-East & Cumbria, with more urinary incontinence in North-East & Cumbria and Peninsula, greater sexual problems in West Midlands and poorer vitality in North-East & Cumbria and West Midlands. Limitations include difficulty identifying clinically significant differences and limited information on pre-treatment conditions.

Conclusions: Despite adjustment for treatment, clinical and socio-demographic factors, quality of survival among prostate cancer survivors varied by area of residence. Adoption of best practice from areas performing well could support enhanced survival quality in poorer performing areas, particularly with regards bowel problems and vitality, where clinically relevant differences were reported.

Patient summary: We conducted a UK-wide survey of patient’s quality of life after treatment for prostate cancer. Outcomes were found to vary depending upon where patients live. Different service providers need to ensure that all prostate cancer patients receive the same follow up care.

Written information can be an essential source of support in the promotion of lifestyle changes after a cancer diagnosis. This study aimed to identify and assess the quality of available online Patient Information Materials (PIMs) in relation to diet and nutrition for pelvic cancer patients. The online sources of the National Health Service, cancer centres and charitable organisations throughout the UK were searched. Content was assessed using an evidence-based checklist, and readability with two validated formulas. Consumer feedback was sought through Patient and Public Involvement (PPI) groups. Forty PIMs were identified; four were designed specifically for pelvic cancers (bladder, bowel, prostate) and 36 were generic (relevant for all cancers). Most PIMs had a good content score, with PIMs from charities scoring higher overall than PIMs from cancer centres [32 (4) Vs 23 (11), P

Background. Little is known about the health-related quality of life (HRQL) of men living with advanced prostate cancer.  We report population-wide functional outcomes and HRQL in men with all stages of prostate cancer, and identify implications for healthcare delivery. Methods. Men alive 18-42 months after diagnosis of prostate cancer were identified through cancer registration data.  A postal survey was administered which contained validated measures to assess a) functional outcomes (EPIC-26 plus use of interventions for sexual dysfunction) and b) generic HRQL (EQ-5D-5L & self-assessed health). Log-linear and binary logistic regression models were used to compare functional outcomes and HRQL across diagnostic stage and self-reported treatment groups. Findings. 35,823 (60.8%) men responded.  Stage was known for 85.8%; 19,599 (63.8%) stage I/II, 7,209 (23.4%) stage III, 3,925 (12.8%) stage IV.   Functional outcomes: Poor sexual function was common (81.0%), regardless of stage, and over half of men (55.8%) received no intervention for this.  Differences in urinary and bowel morbidity were greater with respect to treatment than stage.  In men treated with androgen deprivation therapy (ADT), 30.7% reported moderate/big problems with hot flushes, 29.4% with lack of energy and 22.5% with weight gain.  HRQL: Overall self-assessed health was similar in men with stage I-III disease, and whilst reduced in those with stage IV cancer, 23.5% with metastatic disease reported no problems on any EQ-5D dimension. Interpretation. Men diagnosed with advanced disease do not report markedly different HRQL outcomes to those diagnosed with localised disease, although substantial problems with hormonal function and fatigue are reported amongst men treated with ADT.  Sexual dysfunction is common and the majority of men are not offered helpful intervention or support.  Service improvements around sexual rehabilitation and measures to reduce the impact of ADT are required.

Purpose 

To identify the qualitative evidence on the experience of cancer and comorbid illness from the perspective of patients, carers and health care professionals to identify psycho-social support needs, experience of health care, and to highlight areas where more research is needed. 

Methods 

A qualitative systematic review following PRISMA guidance. Relevant research databases were searched using an exhaustive list of search terms. Two reviewers independently screened titles and abstracts and discussed variations. Included articles were subject to quality appraisal before data extraction of article characteristics and findings. Thomas and Harden’s thematic synthesis of extracted findings was undertaken. 

Results

Thirty-one articles were included in the review, covering a range of cancer types and comorbid conditions; with varying time since cancer diagnosis and apparent severity of disease for both cancer and other conditions. The majority of studies were published after 2010 and in high income countries. Few studies focused exclusively on the experience of living with comorbid conditions alongside cancer; such that evidence was limited. Key themes identified included the interaction between cancer and comorbid conditions, symptom experience, illness identities and ageing, self-management and the role of primary and secondary care. 

Conclusions 

In addition to a better understanding of the complex experience of cancer and comorbidity, the review will combine with research prioritisation work with consumers to inform an interview study with the defined patient group. 

Implications for Cancer Survivors

Expanding this evidence base will help to illuminate developing models of cancer patientcentred follow-up care for the large proportion of patients with comorbid conditions

Objectives. To explore the experience of treatment decision-making (TDM) amongst men diagnosed with stage 1-3 prostate cancer. Methods. Mixed-methods study incorporating UK wide cross-sectional postal survey of men 18-42 months post-diagnosis and semi-structured interviews with a subsample (n=97), including men who received both radical treatments and active surveillance. Interview data was analysed using a Framework approach. Findings. Within the context of TDM, ‘drivers’ included men’s preferences for decision-making responsibility or clinical direction, relative treatment intrusiveness or desire for excision, and work, personal and social life priorities; ‘facilitators’ were mechanisms such as shared decision-making utilised by clinicians to enact, but also sometimes challenge drivers. Drivers and facilitators can conflict, challenging patient empowerment. Men frequently undertook greater TDM responsibility than they desired, with no clinical recommendations; others reported receiving conflicting clinical recommendations. Information on potential side effects was often reported as inadequate. Unchallenged preferences, absence of clinical recommendations and inadequate preparation for side effects sometimes led to decision regret. Conclusions. TDM should involve men exercising preferences and priorities in discussion with clinicians. Men are not empowered when required to take more TDM responsibility than desired or when their potentially inappropriate preferences are unchallenged. Clinicians should ensure patients do not receive conflicting recommendations.

Background. Adjuvant endocrine therapy (AET) is prescribed to women for 5–10 years after treatment for estrogen receptor positive (ER+ve), early-stage breast cancer. AET has proven effectiveness in reducing the risk of recurrence of breast cancer and mortality. However, adherence is known to be suboptimal with around 20% discontinuing by 2 years and up to 50% discontinuing by 5 years. Interventions are needed to support women taking AET after breast cancer. The aim of this study was to develop and pilot test an e-health app for this population. Methods. Two focus groups (n=15) and five interviews were conducted with women following treatment for early-stage breast cancer to assess the likely acceptability of an e-health app and to inform the content (Phase I). Following development of a prototype e-health app, a simple heuristic usability test was completed by five women in order to identify any design usability problems (Phase II). A further 18 women used the app for 1 month between July and August 2016, after which they were interviewed by telephone to collect their experiences and views of the app (Phase III). Results. The prototype e-health app included evidence-based information on effectiveness of AET, an electronic side-effects diary, a peer support forum, a repeat prescription reminder, suggested strategies for facilitating adherence and managing any side effects that occur, and a link to further evidence and useful organizations for further information and support. The app was received positively by women. Women found the app useful as it emphasized the importance of taking AET, helped them manage their side effects and provided details of support organizations, while offering empathy and exchange of suggestions for self-management strategies through the peer support forum. Conclusion. Overall, findings suggest that this novel e-health app has potential as a feasible medium for promoting adherence to AET. Future research should evaluate the efficacy of the app in supporting women and promoting adherence.

Objective. The number of younger men being diagnosed with Prostate cancer (PCa), (aged ≤65) is increasing. It is recognised that PCa and treatment side effects can have a significant impact on quality of life. This study explores the challenges faced by younger couples affected by PCa with dependent children (under 18 years) or young adults (18-29 years) in their families. Methods. Twenty-three men with PCa and their partners were interviewed (separately) by telephone. Participants were recruited from respondents to the Life After Prostate Cancer Diagnosis (LAPCD) national survey. Men were three to five years post-diagnosis, and following a range of treatment pathways. Data were analysed using the Framework approach. Results. Younger couples affected by PCa felt challenged by issues relating to their parental role and the dynamics within the family. Five main themes emerged: difficult conversations about PCa diagnosis; parental perceptions of the impact of diagnosis on children; parental responses to the impact of PCa on the family; shielding, coping and normalising strategies; and levels of support. Conclusions. A diagnosis of PCa can cause significant disruption to the family unit and the quality of life of its members. Support programmes offering guidance to children/young adults affected by PCa in their family, and addressing the concerns of parents may help families to better adapt. Encouraging clinical professionals to initiate conversations with younger couples about their children may be a way forward in directing appropriate support. Further research is needed to elucidate appropriate, effective supportive interventions.

Purpose. To investigate factors associated with job-loss and early retirement in men diagnosed with prostate cancer (PCa) 18-42 months previously. Methods. Men ≤60 years at diagnosis who completed the Life After Prostate Cancer Diagnosis (LAPCD) survey were identified. Men who moved from employment at diagnosis to unemployment (EtoU) or retirement (EtoR) at survey (18-42 months post-diagnosis) were compared to men remaining in employment (EtoE). Socio-demographic, clinical and patient reported factors were analysed in univariable and multivariable analysis. Results. There were 3,218 men (81.4%) in the EtoE, 245 (6.2%) in EtoU and 450 (11.4%) in the EtoR groups. Men with stage IV disease (OR=4.7 95%CI 3.1–7.0, relative to Stage I/II) and reporting moderate/big bowel (OR=2.5, 95%CI 1.6–3.9) or urinary problems (OR=2.0, 95%CI 1.4–3.0) had greater odds of becoming unemployed. Other clinical (≥1 comorbidities, symptomatic at diagnosis) and socio-demographic (higher deprivation, divorced/separated), living in Scotland or Northern Ireland [NI]) factors were predictors of becoming unemployed. Men who were older, from NI, with Stage IV disease and with caring responsibilities had greater odds of retiring early. Self-employed and non-white men had lesser odds of retiring early. Conclusion. PCa survivors who retire early following diagnosis do not report worse urinary or bowel problems compared to men remaining in employment. However, we identified clinical and socio-demographic factors which increased unemployment risk in PCa survivors. Implications for Cancer Survivors. Targeted support and engagement with PCa survivors at risk of unemployment, including their families and employers, is needed.

Purpose: To review and interpret existing qualitative literature on the experiences of couples affected by prostate cancer (PCa).
Methods: A metasynthesis was carried out which included a systematic search of seven databases between 2000 and 2016. A modified version of Noblit and Hare’s meta-ethnographic approach was used to synthesise qualitative study findings and inform overarching interpretations.
Results: Thirty-seven studies focusing on the experiences of men with PCa and their partner dyad were included producing seven interconnected constructs. The construct accepting change vs seeking continuity reflects the range of ways individuals within the dyad and couples adjust to the diagnosis. Cultivating connection vs disengaging illustrates how couples seek to manage the impact of PCa and its treatment on their relationship, which may lead to a threatened identity, including sexual insecurities. Shielding me, you and us reflects the ways in which couples strive to protect themselves as individuals and/or each other from the impact of PCa. Being a partner and its challenges highlights the responsibilities partners assume and the impact of their supporting role. Yet, partners sometimes report feeling unsupported and side-lined both by the man they are caring for and by healthcare professionals. Couples often recognise the value of facing PCa together.
Conclusions: PCa affects both members of the dyad as individuals, as well as the couple’s relationship. How best to support couples and how to overcome difficulties in expressing their concerns to one another requires further consideration. Healthcare professionals should endeavour to employ a couple-focused approach where appropriate.

interventions to support women and promote adherence. A questionnaire survey to measure

level of adherence, side effects experienced, beliefs about medicine, support received and socio-demographic details was sent to 292 women 2-4 years post breast cancer diagnosis. Differences between non-adherers and adherers to AET were explored, and factors associated with intentional and unintentional non-adherence are reported. Approximately one quarter of respondents, 46 (22%), were non-adherers, comprising 29 (14%) intentional non-adherers and 17 (8%) unintentional non-adherers. Factors significantly associated with intentional non-adherence were: the presence of side effects (p<0.03), greater concerns about AET (p<0.001), and a lower perceived necessity to take AET (p<0.001). Half of the sample (105/211) reported that side effects had a moderate or high impact on their quality of life. Factors associated with unintentional non-adherence were: younger age (<65), (p<0.001), post-secondary education (p=0.046), and paid employment (p=0.031). There are distinct differences between intentional non-adherence and unintentional non-adherence. Differentiation between the two types of non-adherence may help tailor support and advice interventions. 

Purpose. To assess feasibility and health economic benefits and costs as part of a pilot study for a nurse-led, psychoeducational intervention (NPLI) for prostate cancer in order to understand the potential for cost effectiveness as well as contribute to the design of a larger scale trial.

Methods. Men with stable prostate cancer post-treatment were recruited from two cancer centres in the UK. Eighty-three men were randomised to the NLPI plus usual care or usual care alone (UCA) (42 NLPI and 41 UCA); the NLPI plus usual care was delivered in the primary-care setting (the intervention) and included an initial face-to-face consultation with a trained nurse, with follow-up tailored to individual needs. The study afforded the opportunity to undertake a short-term within pilot analysis. The primary outcome measure for the economic evaluation was quality of life, as measured by the EuroQol five dimensions questionnaire (EQ-5D) (EQ-5D-5L) instrument. Costs (£2014) assessed included health-service resource use, out-of-pocket expenses and losses from inability to undertake usual activities.

Results. Total and incremental costs varied across the different scenarios assessed, with mean cost differences ranging from £173 to £346; incremental effect, as measured by the change in utility scores over the duration of follow-up, exhibited wide confidence intervals highlighting inconclusive effectiveness (95% CI: -0.0226; 0.0438). The cost per patient of delivery of the intervention would be reduced if rolled out to a larger patient cohort.

Conclusions. The NLPI is potentially cost saving depending on the scale of delivery; however, the results presented are not considered generalisable.

functioning, affecting quality of life. Most men with PCa are older (>= 65 years), married

and heterosexual and little is known about the impact on men who are younger, unpartnered

or gay. We aimed to synthesise existing qualitative research on these three groups of men.

A systematic metasynthesis was undertaken that included data on the unique impacts of PCa

on younger (<65 years) (n=7 papers), unpartnered (n=17 papers), or gay or bisexual men

(n=11 papers) using a modified meta-ethnographic approach. The three overarching

constructs illustrated the magnified disruption to men’s biographies, that included:

marginalisation, isolation and stigma– relating to men’s sense of being ‘out of sync’; the

burden of emotional and embodied vulnerabilities and the assault on identity– illustrating

the multiple threats to men’s work, sexual and social identities; shifting into different

communities of practice– such as the shift from being part of a sexually active community to

celibacy. These findings suggest that PCa can have a particular impact on the quality of life

of younger, unpartnered, and gay men. This has implications for the provision of tailored

support and information to these potentially marginalised groups.

socially; affecting the health-related quality of life (HRQL) of men and their partners/spouses.

The Life After Prostate Cancer Diagnosis (LAPCD) study is a UK-wide patient-reported

outcomes study which will generate information to improve the health and well-being of men

with prostate cancer.
 

Methods and analysis: Postal surveys will be sent to prostate cancer survivors (18-42

months post-diagnosis) in all four UK countries (n=~70,000). Eligible men will be identified

and/or verified through cancer registration systems. Men will be surveyed twice, 12 months

apart, to explore changes in outcomes over time. Second separate cohorts will be surveyed

once and the design will include evaluation of the acceptability of online survey tools. A

comprehensive Patient Reported Outcome Measure (PROM) has been developed using

generic and specific instruments with proven psychometric properties and relevance in

national and international studies. The outcome data will be linked with administrative health

data (e.g. treatment information from hospital data). To ensure detailed understanding of

issues of importance, qualitative interviews will be undertaken with a sample of men who

complete the survey across the UK (n=~150) along with a small number of partners/spouses

(n=~30).
 

Ethics and dissemination: The study has received the following approvals: Newcastle &

North Tyneside 1 Research Ethics Committee (15/NE/0036), Health Research Authority

Confidentiality Advisory Group (15/CAG/0110), NHS Scotland Public Benefit and Privacy

Panel (0516-0364), Office of Research Ethics Northern Ireland (16/NI/0073) and NHS R&D

approval from Wales, Scotland and Northern Ireland. Using traditional and innovative

methods, the results will be made available to men and their partners/spouses, the funders,

the NHS, social care, voluntary sector organisations and other researchers. 

Objectives: To explore the experiences of young adults with Hodgkin lymphoma during the first year following the end of initial treatment.

Research approach: A qualitative grounded theory study.

Setting: Interviews with patients recruited from three cancer centres in England.

Participants: 10 Hodgkin lymphoma survivors (4 men and 6 women, 21-39 years old) recruited as part of a larger study of 28 young adult cancer survivors.

Methodologic approach: Semi-structured interviews conducted approximately two months following treatment completion and follow-up interviews conducted 7 months later.  Our grounded theory of positive psychosocial adjustment to cancer (Matheson et al., 2016)provided the conceptual framework.

Findings:  Positive reframing, informal peer support, acceptance and normalisation helped young adults dismantle the threats of Hodgkin lymphoma over the course of treatment but they described losing a sense of security following treatment completion. Greater age-specific information to enable better preparation for the future was desired regarding body image, fertility, sexual relationships, work and socialising.

Conclusions: Informal support mechanisms such as peer support and patient navigator interventions might be useful ways to further support young adults around treatment completion.

Interpretation for practice: Positive psychosocial adjustment to cancer survivorship in young adults is facilitated by having informal peer support, being able to positively reframe, accept and normalize their experience and being prepared for the future.

Methods: We undertook a systematic metasynthesis of qualitative studies using a modified version of Noblit and Hare's 'meta-ethnography' approach, with a 2000-2015 search of seven databases.

Results: Thirteen studies of men from US and UK BME groups were included. We explored constructs with BME-specific features. Healthcare provider relationships, formation of a spiritual alliance with God (which enhanced the participants’ feeling of empowerment and ability to cope with the cancer) and living on for others (generally to increase cancer awareness), often connected to spiritual regrowth, were the three constructs most commonly reported. A magnified effect from erectile dysfunction was also common. Initially this affected men’s disclosure to others about their cancer and their sexual problems, but eventually men responded by shifting their conceptualisations of masculinity to sustain self and social identities. There was also evidence of inequality resulting from financial constraints and adversity that necessitated resilience in coping.

Conclusions: The prostate cancer experience of BME men and their partners is affected by a complex intersection of ethnicity with other factors. Healthcare services should acknowledge this. If providers recognise the men’s felt masculinities, social identities and spiritual beliefs and their shifting nature, services could be improved, with community as well as individual benefits. More studies are needed in diverse ethnic groups. 

Background: Prostate cancer can have a detrimental impact on men’s quality of life, especially sexual, urinary and emotional functioning. As prostate cancer survivors are often older and married, little is known about the unique impact on younger, unpartnered or gay survivors.

Aims: We aimed to synthesise existing qualitative research on these three groups of men (younger, unpartnered or gay).

Methods: A focused metasynthesis was conducted on qualitative studies that included data on the impacts on either younger (

Results: Third order concepts were developed for the three different groups of survivors. Four overarching themes were constructed:  stigma and separateness – relating to men’s sense of being isolated and ‘out of sync’; the challenge of renegotiating disrupted identities ­– illustrating the multiple threats to men’s work, home, sexual and social identities; the magnified threat to quality of life: emotional and embodied vulnerability – highlighting how these men have specific support and information needs; disrupting and accelerating the future: an unwanted burden – highlighting the disruption caused to men’s futures, including the shadow cast over future relationships and feeling forced into premature old age.

Conclusions: This highlights the unique and shared experiences of younger, single and gay prostate cancer survivors. Areas where these potentially more vulnerable survivors may require additional support and information are highlighted.  

partners consider the dominant ethnic groups in the USA, UK, Scandinavia and Australia, with

generally concordant findings. Other ethnic groups are likely to have different experiences.

Aims: To explore the impact of prostate cancer and its treatment on men and their partners from

the less studied ethnic groups.
 

Methods: Using meta-ethnography and textual narrative we synthesised peer reviewed qualitative interview-based studies dated 2000-2015 focused on less well reported ethnic groups, as a subsynthesis of a comprehensive metasynthesis on the impact of prostate cancer.

Results: Twenty-two papers (15 studies) covering 11 ethnic groups were analysed. Nine studies

considered black and minority ethnic groups in the UK and USA, with the remainder in Brazil, the Pacific Islands, Israel, Turkey and Japan. We collected first and second order themes from the studies to develop conceptual third order themes with the following specific to the US and UK minority groups and Pacific Islanders: A spiritual continuum: from the will of God to God as helpmate; One more obstacle in the lifelong fight against adversity; Developing sensitive talk with a purpose (on disclosing the cancer to informal networks in culturally appropriate ways). Themes from the other studies were similar to those in the overall metasynthesis.

Conclusions: Healthcare for prostate cancer should take account of contextually and culturally

specific coping mechanisms and psychosocial factors in minority ethnic groups. More studies are needed in diverse ethnic groups.

Recurrence is a difficult stage in the cancer journey as it brings to the fore the life-threatening nature of the illness. This meta-ethnography examines and synthesises the findings of qualitative research regarding patients' experience of cancer recurrence.

Methods

A systematic search of the qualitative studies published between January 1994 to April 2014 was undertaken. Seventeen relevant papers were identified, and a meta-ethnography was conducted.

Results

Six third-order concepts were developed to capture patients' experiences: experiencing emotional turmoil following diagnosis, which described the emotional impact of diagnosis and the influence of previous experiences on how the news were received; experiencing otherness, encompassing changed relationships; seeking support in the health care system, describing the extent of information needs and the importance of the relationship with health care professionals; adjusting to a new prognosis and uncertain future, highlighting the changes associated with uncertainty; finding strategies to deal with recurrence, describing ways of maintaining emotional well-being and regaining a sense of control over cancer; and facing mortality, describing the difficulties in facing death-related concerns and associated consequences.

Conclusions

This meta-ethnography clarifies the fundamental aspects of patients' experience of recurrence. It suggests that health care professionals can promote a positive experience of care and help lessen the psychosocial impact of recurrence by providing information in an approachable way and being sensitive to their changing needs. It also points to the importance of supporting patients in adopting strategies to regain a sense of control and to address their potential mortality and its impact on loved ones.

Purpose
Testicular cancer commonly affects men in the prime of their lives. While survival rates are excellent, little previous research has examined men’s experiences of adjustment to survivorship. We aimed to explore this issue in younger testicular cancer survivors.

Methods
In-depth qualitative interviews were conducted with testicular cancer survivors over     two time points approximately 6 months apart in the year following treatment                completion. Interviews were analysed using a grounded theory approach.

Results
The sample included 18 testicular cancer survivors between 22 and 44 years (mean age 34). A grounded theory was developed, which explained the process of positive adjustment over the first year following the treatment completion in terms of men’s ability    to dismantle the present and future threats of cancer, involving the key transitions of    gaining a sense of perspective and striving to get on with life and restore normality.          These were facilitated by six key processes. The processes that explained a negative adjustment trajectory are also presented.

Conclusions
These findings contribute to the understanding of the psychosocial impact of testicular cancer on younger men’s lives and have implications for the provision of support to      testicular cancer survivors. Further investigation into the feasibility of one-on-one peer     support interventions is warranted, as well as informal support that respects men’s          desire for independence.

Implications for Cancer Survivors
Understanding the processes involved in adjustment highlights ways in which health professionals can offer support to those struggling to adjust through challenging illness   beliefs, encouraging emotional disclosure and facilitating peer mentoring.

As more patients survive cancer for longer, the long term and late effects of treatments become increasingly important issues for cancer survivors and providing information to enable survivors to recognise and manage them becomes increasingly pressing challenges for health care professionals.  The aim of this study was to explore the experiences of cancer survivors regarding information given on potential long term and late effects of pelvic radiotherapy.  Semi-structured interviews were conducted with 28 cancer survivors who had had radiotherapy to the pelvic area for a range of cancers 1 to 11 years previously. Participants were recruited using maximum variation sampling from a larger questionnaire survey of patients treated at one hospital.  Interviews were recorded, transcribed and analysed using Framework.  Participants recognised the value of information to reassure and to inform action but also its potentially undesirable effects to frighten or raise anxieties about future problems and its inherent limitations in meeting their wider needs.  They identified the timing, amount of information and context in which it was given as of particular importance. Information based on personal experience was also valued.  These findings highlight the importance of appropriate, individualised information during treatment, at hospital discharge and subsequently in primary care.

BACKGROUND:

Women with a significant family history of breast cancer are often offered more intensive and earlier surveillance than is offered to the general population in the National Breast Screening Programme. Up to now, this strategy has not been fully evaluated.

OBJECTIVE:

To evaluate the benefit of mammographic surveillance for women aged 40-49 years at moderate risk of breast cancer due to family history. The study is referred to as FH01.

DESIGN:

This was a single-arm cohort study with recruitment taking place between January 2003 and February 2007. Recruits were women aged < 50 years with a family history of breast or ovarian cancer conferring at least a 3% risk of breast cancer between ages 40 and 49 years. The women were offered annual mammography for at least 5 years and observed for the occurrence of breast cancer during the surveillance period. The age group 40-44 years was targeted so that they would still be aged < 50 years after 5 years of surveillance.

SETTING:

Seventy-four surveillance centres in England, Wales, Scotland and Northern Ireland.

PARTICIPANTS:

A total of 6710 women, 94% of whom were aged < 45 years at recruitment, with a family history of breast cancer estimated to imply at least a 3% risk of the disease between the ages of 40 and 50 years.

INTERVENTIONS:

Annual mammography for at least 5 years.

MAIN OUTCOME MEASURES:

The primary study end point was the predicted risk of death from breast cancer as estimated from the size, lymph node status and grade of the tumours diagnosed. This was compared with the control group from the UK Breast Screening Age Trial (Age Trial), adjusting for the different underlying incidence in the two populations.

RESULTS:

As of December 2010, there were 165 breast cancers diagnosed in 37,025 person-years of observation and 30,556 mammographic screening episodes. Of these, 122 (74%) were diagnosed at screening. The cancers included 44 (27%) cases of ductal carcinoma in situ. There were 19 predicted deaths in 37,025 person-years in FH01, with an estimated incidence of 6.3 per 1000 per year. The corresponding figures for the Age Trial control group were 204 predicted deaths in 622,127 person-years and an incidence of 2.4 per 1000 per year. This gave an estimated 40% reduction in breast cancer mortality (relative risk = 0.60; 95% confidence interval 0.37 to 0.98; p = 0.04).

CONCLUSIONS:

Annual mammography in women aged 40-49 years with a significant family history of breast or ovarian cancer is both clinically effective in reducing breast cancer mortality and cost-effective. There is a need to further standardise familial risk assessment, to research the impact of digital mammography and to clarify the role of breast density in this population.

BACKGROUND:

Around 1 in 10 of all cancer cases occur in adults of reproductive age. Cancer and its treatments can cause long-term effects, such as loss of fertility, which can lead to poor emotional adjustment. Unmet information needs are associated with higher levels of anxiety. US research suggests that many oncologists do not discuss fertility. Very little research exists about fertility information provision in the United Kingdom. This study aimed to explore current knowledge, practice and attitudes among oncologists in the United Kingdom regarding fertility preservation in patients of child-bearing age.

METHODS:

A national online survey of 100 oncologists conducted online via medeconnect, a company which has exclusive access to the doctors.net.uk membership of GMC registered doctors.

RESULTS:

Oncologists saw fertility preservation (FP) as mainly a women's issue, and yet only felt knowledgeable about sperm storage, not other methods of FP; 87% expressed a need for more information. Most reported discussing the impact of treatment on fertility with patients, but only 38% reported routinely providing patients with written information, and 1/3 reported they did not usually refer patients who had questions about fertility to a specialist fertility service. Twenty-three per cent had never consulted any FP guidelines. The main barriers to initiating discussions about FP were lack of time, lack of knowledge, perceived poor success rates of FP options, poor patient prognosis and, to a lesser extent, if the patient already had children, was single, or could not afford FP treatment.

CONCLUSION:

The findings from this study suggest a deficiency in UK oncologist's knowledge about FP options and highlights that the provision of information to patients about FP may be sub-optimal. Oncologists may benefit from further education, and further research is required to establish if patients perceive a need for further information about FP options.

Background: A cancer diagnosis can have a profound impact on partners and close familymembers of patients. Little is currently known about the long-term impact.Objectives: The objective of this study is to describe health status, levels of anxiety and depression,unmet supportive care needs and positive outcomes in the partners/family members ofbreast, prostate and colorectal cancer survivors 5-16 years post-diagnosis.Methods: Patients in a linked study were asked to invite a partner or other close family memberto complete a self-administered postal questionnaire. Data were analysed by cancer site andtime since diagnosis. Matched comparisons were made between cancer patients in the linkedstudy and their partners.Results: An expression of interest was received from 330 partners/family members, and 257questionnaires (77.9%) were returned. Health status and levels of anxiety and depression werecomparable with population norms. Respondents reported an average of 2.7 unmet needs from34 possible options. Hospital parking, information about familial risk, help managing fear ofrecurrence and coordination of care were the most cited unmet needs. There was little variationin health status, psychological morbidity and unmet needs by cancer site or time since diagnosis.Concordance between patients and partners was low for anxiety but higher with respect topositive outcomes and some unmet needs.Conclusions: Most partners/family members of long-term cancer survivors report fewongoing issues. However, a small proportion (<10%) have high levels of anxiety and/or moderateor strong unmet needs. Strategies for identifying this group and addressing their needs arerequired, while allowing the majority to resume normal life.

Aims

As cancer survival rates continue to increase, it is important to maximise the quality of life of cancer survivors. Pelvic radiotherapy is a common cancer treatment. Bladder, bowel and sexual dysfunction are recognised side-effects of treatment, and yet relatively little is known of the extent to which they remain problems in the longer term when patients are often managed by primary care, nor of the psychological impact of symptoms and effects on quality of life. Therefore, the aims of this study were to estimate the prevalence of bladder, bowel and sexual dysfunction late effects in a sample of cancer survivors; assess the impact of time since treatment on symptom prevalence; and explore the relationship between symptoms, psychological morbidity and quality of life.

Materials and methods

A questionnaire was given to a sample of cancer survivors treated in Oxford who had pelvic radiotherapy 1–11 years previously. The questionnaire measured patient-reported toxicity (Common Toxicity Criteria of Adverse Events/Late Effects of Normal Tissues – Subjective, Objective, Management and Analytic Measure), psychological morbidity (Hospital Anxiety and Depression Scale) and quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30).

Results

In total, 418 (57.1%) completed questionnaires were received. Moderate/severe problems with bowel, urinary and sexual functioning were relatively common: bowel urgency (59% women, 45% men); urine urgency (49% women, 46% men); ability to have a sexual relationship affected (24% women, 53% men). Symptoms were just as frequent in those 6–11 years after treatment as in those 1–5 years after treatment. Symptom severity was significantly associated with poorer overall quality of life and higher levels of depression.

Conclusions

Late effects are common among long-term cancer survivors who have had pelvic radiotherapy, and are associated with reduced quality of life and psychological morbidity. It is imperative due attention is paid to this issue during the follow-up phase – both in secondary and primary care. Health care professionals providing follow-up care need to be aware of the importance of assessing and monitoring symptoms, and need to be adequately informed on the most appropriate management strategies.

The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor’s needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a better knowledge of the patient’s background and family relationships. However, their current involvement in the cancer survivor’s and partner’s cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period.

Methods

Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the ‘framework’ approach to thematic analysis.

Results

Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about.

Conclusions

Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful.

Discharge from hospital follow-up is a key time point in the cancer journey. With recommendations for earlier discharge of cancer survivors, attention to the discharge process is likely to become increasingly important. This study explored cancer survivors' experiences of discharge from hospital follow-up. Survivors of breast, colorectal and prostate cancer (n = 1275), 5-16 years post diagnosis were approached to take part in a questionnaire survey. The questionnaire included questions about discharge status, provision of time/information prior to discharge, feelings at discharge and satisfaction with how discharge was managed. Completed questionnaires were returned by 659 survivors (51.7%). Approximately one-third of respondents were not discharged from follow-up 5-16 years post diagnosis. Of those discharged, a substantial minority reported insufficient time (27.9%), information (24.5-45.0%) or adverse emotions (30.9%) at the time of discharge. However, 90.6% of respondents reported satisfaction with how discharge from hospital follow-up was managed. Despite high levels of satisfaction, discharge of cancer survivors from hospital follow-up could be improved with the provision of additional time, information and support. Better structuring of the final hospital appointment or a review appointment in primary care at this time could help to ensure that discharge from hospital follow-up is managed optimally for cancer survivors.

There are approximately 2 million people now living with or beyond cancer in the UK (Maddams et al, 2009) and this number is increasing. Cancer survivors can experience physical, psychological and social consequences as a result of the disease and the treatments received (Jefford et al, 2008; Foster et al, 2009). The effects may be immediate, some of which will resolve and others may persist and become long-term. Late effects can also occur and the interval between the end of treatment and onset can range from a few weeks (e.g. lymphoedema after axillary node removal) to several years (e.g. heart disease following radiotherapy to the chest area). Problems will be individual to each patient due to a unique combination of circumstances including the site and stage of the cancer, the type of treatment(s) given, the age of the patient, genetic factors, concomitant co-morbidities, family and social circumstances, and personality traits.

The recent National Cancer Survivorship Initiative (NCSI) acknowledges the range of issues which cancer survivors may face, and highlights the need for health professionals to organise care accordingly (NCSI, 2010a). The recent NCSI Research Priorities Report (NCSI, 2010b) identified two areas of priority for research to inform practice: the establishment of large cohort studies (to determine the range and frequency of problems following treatment) and the development of risk stratification tools. However, the report did not develop a detailed definition of risk stratification nor did it elucidate what outcomes risk stratification should address.

The purpose of this paper, prepared by members of the Survivorship Sub-group of the National Cancer Research Institute Primary Care Clinical Studies Group, is therefore to further define the term risk stratification in relation to cancer survivorship; to propose a framework for risk stratification; and to consider what research is required to support its implementation. The focus of our paper is on stratifying risk in relation to the late effects of diagnosis and treatment. We do not therefore address prognostic risk stratification, a topic for which there is already a large body of literature.

Objective. A prospective psychological evaluation study of familial ovarian cancer screening (PsyFOCS) is underway in partnership with the UK Familial Ovarian Cancer Screening Study (UK FOCSS Phase 2). One of the aims of PsyFOCS is to examine factors associated with withdrawal from the UK FOCSS prior to the onset of 4-monthly screening. Method. 1999 of 3224 women completed a baseline questionnaire. 110 (5.5%) women withdrew from screening prior to their first routine Phase 2 screen, of which 73 (66.4% of withdrawals) had withdrawn because they had undergone removal of their ovaries and fallopian tubes (withdrawn group). The comparison group consisted of 1868 women who remained on screening. The baseline questionnaire included measures of cancer-specific distress, anxiety, depression and illness perceptions. Results. Logistic regression analysis indicated that having had prior annual (Phase 1) screening (OR = 13.34, p<.01), past experience of further tests (OR = 2.37, p<.01) and greater cancer-specific distress (OR = 1.38, p<.01) were associated with withdrawal for surgery. Belief in ageing as a cause of ovarian cancer was also associated with withdrawal (OR = 1.32, p = .05). Conclusion. These cross-sectional data suggest that withdrawal from familial ovarian cancer screening may be influenced by both clinical and psychological factors. These may reflect women's experience of the drawbacks of screening and increased concern about ovarian cancer risk, as well as having opportunities to consider surgery as an alternative risk management strategy whilst using screening as an interim measure.

A recent study published in the Lancet,1 showing impressive benefits of low dose aspirin in reducing both cancer mortality and all-cause mortality, received a lot of press publicity. The Daily Mail for example, claimed ‘Aspirin really can beat cancer’.2 No doubt following this publicity many primary care doctors have been asked the question ‘Doctor, should I be taking aspirin?’. In this article we discuss how this latest publication fits in with previous evidence, and the clinical implications of the findings in relation to the primary prevention of cancer.

Objective: To gain insight into patients' experiences of follow-up care after treatment for prostate cancer and identify unmet psychosexual needs. Methods: Semi-structured interviews were conducted with a purposive sample of 35 patients aged 5982 from three UK regions. Partners were included in 18 interviews. Data were analyzed using constant comparison. Results: (1) Psychosexual problems gained importance over time, (2) men felt they were rarely invited to discuss psychosexual side effects within follow-up appointments and lack of rapport with health care professionals made it difficult to raise problems themselves, (3) problems were sometimes concealed or accepted and professionals' attempts to explore potential difficulties were resisted by some, and (4) older patients were too embarrassed to raise psychosexual concerns as they felt they would be considered 'too old' to be worried about the loss of sexual function. Conclusion: Men with prostate cancer, even the very elderly, have psychosexual issues for variable times after diagnosis. These are not currently always addressed at the appropriate time for the patient. Practice implications: Assessments of psychosexual problems should take place throughout the follow-up period, and not only at the time of initial treatment. Further research examining greater willingness or reluctance to engage with psychosexual interventions may be particularly helpful in designing future interventions.

Purpose There are 1.2 million long-term cancer survivors in the United Kingdom. Existing research on the health and supportive care needs of these survivors is sparse and inconclusive. This study investigated health status, psychological morbidity, and supportive care needs in long-term cancer survivors in the United Kingdom. Methods Five to 16 years after diagnosis, 1,275 eligible survivors of breast, colorectal, and prostate cancers were approached to participate in a questionnaire survey. The questionnaire explored health status (European Quality of Life-5 Dimensions), psychological morbidity (Hospital Anxiety and Depression Scale), and supportive care needs (Cancer Survivors' Unmet Needs Measure). Data were analyzed by type of cancer and time since diagnosis. Logistic regression was used to identify predictors of unmet supportive care needs. Results The response rate was 51.7% (659 survivors). Overall health status and levels of psychological morbidity were consistent with population norms. At least one unmet supportive care need was reported by 47.4% of survivors, but overall numbers of unmet needs were low (mean, 2.8; standard deviation, 4.8). The most frequently endorsed unmet need was for help to manage concerns about cancer recurrence. Trait anxiety (P < .001), nondischarged status (P < .01), dissatisfaction with discharge (P < .01), and receipt of hormonal therapy (P < .01) were predictive of unmet supportive care needs. Conclusion The findings suggest a majority of long-term breast, colorectal, and prostate cancer survivors who have no signs of recurrence report good health and do not have psychological morbidity or large numbers of unmet supportive care needs. A minority of long-term survivors may benefit from ongoing support. The identification and support of those long-term survivors with ongoing needs is a key challenge for health care professionals.

Background The Quality and Outcomes Framework (QOF) providesan incentive for practices to establish a cancer registerand conduct a review with cancer patients within 6 months of diagnosis, but implementation is unknown. Aim To describe: (1) implementation of the QOF cancer care review; (2) patients" experiences of primary care over the first 3 years following a cancer diagnosis; (3) patients" views on optimal care; and (4) the views of primary care professionals regarding their cancer care. Design of study Qualitative study using thematic analysis and a framework approach. Setting Six general practices in the Thames Valley area. Method Semi-structured interviews with cancer patients and focus groups with primary care teams. Results Thirty-eight adults with 12 different cancer types were interviewed. Seventy-one primary care team members took part in focus groups. Most cancer care reviews are conducted opportunistically. Thirty-five patients had had a review; only two could recall this. Patients saw acknowledgement of their diagnosis and provision of general support as important and not always adequately provided. An active approach and specific review appointment would legitimise the raising of concerns. Primary care teams considered cancer care to be part of their role. GPs emphasised the importance of being able to respond to individual patients" needs and closer links with secondary care to facilitate a more involved role. Conclusion Patients and primary care teams believe primary care has an important role to play in cancer care. Cancer care reviews in their current format are not helpful, with considerable scope for improving practice in this area. An invitation to attend a specific appointment at the end of active treatment may aid transition from secondary care and improve satisfaction with follow-up in primary care.

Background. Follow-up care for prostate cancer has traditionally been led by secondary care in hospital out-patient clinics. As the number of men with prostate cancer increases and secondary care resources face pressure, alternative follow-up models are being sought. Current National Institute for Health and Clinical Excellence guidance recommends follow-up outside the hospital setting for patients who are stable 2 years following radical treatment and for those undergoing 'watchful waiting'. Objective. To describe current practice in a sample of relevant health care professionals and to seek their views on the role of primary care in prostate cancer follow-up. Methods. Semi-structured telephone interviews with 38 UK health care professionals, from both secondary and primary care. Transcripts were analysed using the constant comparative method. Results. There are marked variations in current follow-up practice around the country, with hospital-based follow-up ranging from 6 months to lifetime. The predominant, although not universal, view expressed was that there is both scope and support for primary care to play a greater role, particularly for men with stable disease. This was qualified by the need for supporting education, including guidance on interpretation of prostate-specific antigen values, introduction of robust follow-up systems in primary care, easy access back into secondary (hospital) care, a mechanism for ensuring follow-up data can still be collected for audit purposes and appropriate resourcing. Conclusions. If primary care is to play a significant role in providing high-quality follow-up care for men with prostate cancer, then steps need to be taken to address the barriers to increased primary care involvement identified by this study.

BACKGROUND: Long-term cancer survivors in the United Kingdom are mostly followed up in a primary care setting by their general practitioner; however, there is little research on the use of services. This study examines whether cancer survivors receive adequate screening and preventative care in UK primary care. PATIENTS AND METHODS: We identified a cohort of long-term survivors of breast, colorectal and prostate cancer with at least a 5-year survival using the General Practice Research Database, with controls matched for age, gender and practice. We compared adherence with cancer screening and the use of preventative care between cancer survivors and controls. RESULTS: The cancer survivors' cohort consisted of 18 612 breast, 5764 colorectal and 4868 prostate cancer survivors. Most cancer survivors receive cancer screening at the same levels as controls, except for breast cancer survivors who were less likely to receive a mammogram than controls (OR = 0.78, 95% CI: 0.66-0.92). Long-term cancer survivors received comparable levels of influenza vaccinations and cholesterol tests, but breast (OR 0.81, 95% CI: 0.74-0.87) and prostate cancer survivors (OR = 0.70, 95% CI: 0.57-0.87) were less likely to receive a blood pressure test. All survivors were more likely to receive bone densitometry. CONCLUSIONS: The provision and uptake of preventive care in a primary care setting in the United Kingdom is comparable between the survivors of three common cancers and those who have not had cancer. However, long-term breast cancer survivors in this cohort were less likely to receive a mammogram.

Introduction Cancer survivors may experience long-term depression or anxiety, however, there is little previous research on the use of services in this area. We explored consultation and prescribing behaviour for depression and anxiety amongst cancer survivors in British primary health care. Methods This study uses data on 26,213 survivors of breast, colorectal and prostate cancer at least 5 years post-diagnosis, matched to four controls without cancer, from the UK General Practice Research Database. We compared consultations for depression and anxiety, and prescribing for anti-depressants and anxiolytics between cancer survivors and controls. Results Multivariate, matched regression models showed no difference in consulting for depression or anxiety between any cancer survivors and matched controls. However, breast cancer (odds ratio (OR) 1.16, 95% confidence interval (CI) 1.10-1.22) and prostate cancer survivors (OR 1.31, 95% CI 1.16-1.47) were more likely to receive a prescription for an antidepressant. Breast cancer survivors (IRR 2.49, 95% CI 1.82-3.42) and prostate cancer survivors (IRR 2.84, 95% CI 1.94-4.17) who died received significantly more antidepressants than controls who died. There were no differences in anxiolytic prescribing for colorectal and prostate cancer survivors compared to controls. However, breast cancer survivors nearing the end of life received a greater number of anxiolytic prescriptions compared to controls (IRR 1.84, 95% CI 1.36-2.49). Conclusions In this cohort of cancer survivors, there were no differences in consultation behaviour for depression and anxiety compared to controls. However, breast and prostate cancer survivors access more antidepressants, and those nearing the end of life received the highest volume of prescriptions. Breast cancer survivors at the end of life also receive more anxiolytics.

ABSTRACT To develop an understanding of experiences of follow-up in patients with prostate cancer, to seek explanations as to why men's needs might not be well met, and explore views on the possible role of primary care in follow-up. The experiences of these patients, and views on the delivery of follow-up care, have been relatively neglected compared to those diagnosed with other cancers. PATIENTS AND METHODS In all, 35 patients were recruited from 20 practices across three regions in the UK. Maximum variation was sought by purposely sampling by age (59-82 years), treatment, length (0.75-14 years) and mode of follow-up. RESULTS Patients' descriptions of the content and organization of follow-up showed the shortcomings of follow-up, which included system failings causing patients to be lost to follow-up, and unmet psychosexual needs. Patients were mainly positive about the prospect of follow-up taking place outside the hospital setting. However, some expressed concerns about current follow-up practices and suggested several improvements that need considering if primary care were to take a greater role. CONCLUSION This study identified some general deficiencies with the current system of follow-up, and our data indicate that primary care could have a role in addressing some of these.

Objective: This meta-ethnography synthesises the evidence on the experiences, needs and concerns of younger women with breast cancer. Methods: Using a method called"reciprocal translation" we developed a conceptual model to reflect the local and social contexts, issues, processes, needs and concerns of importance in this literature. Findings: Key findings relate to the particular point in the life-course at which young women with breast cancer stand. Issues for these women relate to feeling different as a result of cancer, fear of recurrence, feeling"out of sync" and altered embodied subjectivity. Young women with breast cancer use three processes to integrate the changes that cancer brings, namely, balancing, normalising and changing. Our conceptual model also highlights young women" s needs, primarily for support, information, childcare, counselling and spiritual support. Areas of reproduction, fertility and sexuality were also of particular concern. The included papers have methodological limitations that impact on our findings, such as opportunistic data analyses, lack of theoretical frameworks and limited reference to socio-cultural factors. Conclusion: The conceptual model developed as a result of this meta-ethnography provides a basis for practitioners to address these young women" s concerns more adequately and comprehensively.

The optimal role for primary care in providing follow-up for men with prostate cancer is uncertain. A systematic review of international guidelines was undertaken to help identify key elements of existing models of follow-up care to establish a theoretical basis for evaluating future complex interventions. Many guidelines provide insufficient information to judge the reliability of the recommendations. Although the PSA test remains the cornerstone of follow-up, the diversity of recommendations on the provision of follow-up care reflects the current lack of research evidence on which to base firm conclusions. The review highlights the importance of transparent guideline development procedures and the need for robust primary research to inform future evidence-based models of follow-up care for men with prostate cancer.

Although the effectiveness of mammography for women under the age of 50 years with a family history of breast cancer (FHBC) has not yet been proven, annual screening is being offered to these women to manage breast cancer risk. This study investigates women's awareness and interpretation of their familial risk and knowledge and views about mammographic screening. A total of 2231 women from 21 familial/breast/genetics centres who were assessed as moderate risk (17-30% lifetime risk) or high risk (>30% lifetime risk) completed a questionnaire before their mammographic screening appointment. Most women (70%) believed they were likely, very likely or definitely going to develop breast cancer in their lifetime. Almost all women (97%) understood that the purpose of mammographic screening was to allow the early detection of breast cancer. However, 20% believed that a normal mammogram result meant there was definitely no breast cancer present, and only 4% understood that screening has not been proven to save lives in women under the age of 50 years. Women held positive views on mammography but did not appear to be well informed about the potential disadvantages. These findings suggest that further attention should be paid to improving information provision to women with an FHBC being offered routine screening.