Dr Lauren Matheson

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.

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. 

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 objective of this work was to explore head and neck cancer (HNC) patients' and their family members' views on acceptability and feasibility of patient-initiated follow-up (PIFU), including concerns and anticipated benefits.

Methods

Patients were recruited from UK HNC clinics, support groups and advocacy groups. They completed a survey (n = 144) and/or qualitative interview (n = 30), three with a family member. Qualitative data were analysed thematically, quantitative data using descriptive statistics.

Results

Preference for follow-up care in HNC was complex and individual. Many patients thought PIFU could beneficially reallocate health care resources and encourage self-management. Patients' main concerns with PIFU were losing the reassurance of regular clinic appointments and addressing mental well-being needs within PIFU, possibly using peer support. Patients were concerned about their ability to detect recurrence due to lack of expertise and information. They emphasised the importance of a reliable, direct and easy urgent appointment service and of feeling supported and heard by clinicians. Patients believed family and friends need support.

Conclusion

PIFU may be feasible and acceptable for certain HNC patients, providing it addresses support for mental well-being, provides quick, reliable and direct clinician access and information on “red flag” symptoms, and ensures patients and their caregivers feel supported.

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.

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: 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.

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.

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.

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.

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.