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Department of Midwifery, Community and Public Health
Faculty of Health and Life Sciences
Eila is a health services researcher. She joined Oxford Brookes in May 2007, taking up the HRH Prince Sultan Chair in Supportive Cancer Care.
After graduating from Edinburgh University with a BSc (Hons) in Biological Sciences, she completed her PhD at the University of London in 1992, and subsequently held posts in the Epidemiology and Health Information Branch of Queensland Health Department (1992-1996) and Oxfordshire Health Authority (1997). Prior to joining Broookes she was Deputy Director of the Cancer Research UK Primary Care Education Research Group at the University of Oxford (1998-2007).
Eila is Chair of the British Psychosocial Oncology Society. She is also a member of the National Cancer Research Institute Psychosocial Oncology and Surviorship Clinical Studies Group and the Primary Care Clinical Studies Group (Survivorship Sub-Group Chair). She sits on the Tenovus Charity Psychosocial Advisory Committee and is a past member of the South Coast Research for Patient Benefit Committee.
Living with Cancer in Contemporary Society
Dissertation Module Co-ordinator
Postgraduate Research Tutor, Community and Health Sciences Doctoral Programme, Faculty Health and Life Sciences
Georgias SaltaurasJohn Curtin
Carolina Casanas i Comabella
Marta Wanat (2016)
Lauren Matheson (2016)
Research interests include: understanding and addressing the needs of those living with and beyond cancer and their family members; the role of primary care in the delivery of cancer care; professional and patient education.
Member of Oxford Institute of Nursing, Midwifery and Allied Heatlh Research (OxINMAHR).
Supportive Care Research Group Lead.
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.
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.
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 (<65 years) (n=14 papers), unpartnered (n=11 papers), or gay (n=7 papers) prostate cancer survivors. This was part of a wider systematic review of qualitative studies (2000 to 2015) investigating the impacts on prostate survivors and their partners (n=148 papers).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Seventy-four surveillance centres in England, Wales, Scotland and Northern Ireland.
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.
Annual mammography for at least 5 years.
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.
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).
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.
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.
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: 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. 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 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.
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.
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.
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.
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.
Background: Testicular Cancer (TC) predominately affects younger men in the prime of their lives. Fortunately, it is the most curable cancer in the UK, with survival rates reaching 96%. Yet little is known about men’s experiences of adjustment and recovery during early survivorship. This study aimed to explore younger men’s evolving experiences of TC over time, the psychosocial impact on their lives, as well as men’s needs during early survivorship.
Methods: A longitudinal qualitative design was chosen. Patients were recruited from several NHS hospitals in the UK. In-depth, semi-structured interviews were conducted within 1-4 months of treatment completion, with TC patients between 20 and 45 year old (n= 11, to date). Interviews were conducted in patient’s homes or place of work and lasted approximately 90 minutes. A Grounded Theory methodology was employed. Longitudinal interviews are currently being conducted at 6 month follow-up (n= 2, to date) and data collection is on-going.
Results: Participants engaged in a process of weighing up the significance of TC; for some, this declined from a major to relatively minor biographical event, particularly if fatherhood was achieved already. TC was often perceived as more significant for partners/family.
Quantitative and qualitative research methods
Complex intervention trials
Patient involvement in research