Development of the 'ACT now & check-it-out' intervention to support patient-initiated follow up for Head and Neck cancer patients.

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.

Shouldn't We Know This Already? UK Women's Views About Communicating the Link Between Alcohol Consumption and Risk of Breast Cancer.

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.

Optimising patient-initiated follow-up care - A qualitative analysis of women with breast cancer in the UK.

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.

Exploring the views of patients' and their family about patient-initiated follow-up in head and neck cancer: A mixed methods study.

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.

Evaluation of an occupational therapy led Paediatric Burns Telehealth Review Clinic: exploring the experience of family/carers and clinicians.

INTRODUCTION: Children with deep-partial or full-thickness burns often require complicated post-surgical care and rehabilitation, including specialist occupational therapy (OT) intervention, to achieve optimal outcomes. Those from rural and remote areas rarely have access to these services and must travel to a tertiary referral hospital to access follow-up, placing them at higher risk of complications and poorer outcomes. The OT-Led Paediatric Burn Telehealth Review (OTPB) Clinic, based at Townsville University Hospital in northern Queensland, Australia, was set up to address this inequity. The aim of this study was to investigate the experience of both family members and clinicians in using the OTPB Clinic. METHODS: A qualitative approach, guided by interpretive phenomenology, was used. Eight family members and six clinicians participated in semi-structured interviews conducted by phone or telehealth. Thematic analysis was used to identify key themes. RESULTS: Four major themes were derived through thematic analysis: continuity of care, family-centred care, technology and building of rural capacity. CONCLUSION: Family and clinicians confirm benefits of a telehealth service for delivering care to rural and remote children after burn injury. The results show this expanded-scope, OT-led telehealth model provides quality patient-centred and expert clinical advice within local communities and builds the skill and capacity of local clinicians. Areas for service enhancement were uncovered. This telehealth model can be translated to other clinical subspecialties across Australia.

Maternal incarceration in a provincial prison in Canada: A qualitative study.

AIMS: To explore the experiences of provincially incarcerated mothers in Nova Scotia, Canada; and to make recommendations with respect to improving the experiences of mothers facing criminalization and their children. DESIGN: This qualitative study is rooted in feminist standpoint theory, community-based research methodologies and prison abolition. METHODS: Mothers who were currently or previously incarcerated were recruited by community partners. Between Fall 2021 and Winter 2022, 14 individual interviews and one focus group were conducted, for a total of 18 study participants. Data were analysed collaboratively using thematic analysis. RESULTS: Three key themes were developed through the data analysis: Maintaining Connection, Broken Bonds and The Damage. Mothers shared experiences of trying to maintain connections with their children through numerous challenges, including emotional distress caused by the separation and significant logistical and financial barriers. Mothers felt their children unfairly bore the burden of their incarceration. They experienced a lack of or outright denial of services while incarcerated, and a lack of transitional support on release, making working towards parenting again difficult and discouraging. CONCLUSION: For participants in our study, separation from their children during incarceration caused severe emotional distress and had serious implications on their right to parent and their relationships with their children. Incarceration for even brief periods has detrimental social impacts, and release planning does not prepare people for the challenges of repairing that damage. Conditions of maternal incarceration are in violation of international human rights laws. IMPACT: Although we make some recommendations for reform (e.g. free phone calls), we focus on alternatives to incarceration for mothers experiencing criminalization. Findings will be shared with relevant institutional partners with the goal of impacting sentencing and incarceration practices.

Peer doula support training for Black and Indigenous groups in Nova Scotia, Canada: A community-based qualitative study.

OBJECTIVES: The objectives of this qualitative study were to explore participant experiences of doula training programs offered by a prisoner health advocacy organization and Indigenous and Black community groups. DESIGN: This investigation employed a qualitative design. Recruitment was conducted through email. Interviews were conducted in Winter 2020. Data were analyzed using thematic analysis. SAMPLE: A total of 12 participants were recruited to participate in this study. Six participants identify as Black and six identify as Indigenous. All participants identify as women. MEASUREMENTS: Qualitative interviews were conducted using a semi-structured interview guide to elicit a breadth of information. RESULTS: Key themes included training experiences, training improvements and ''bridging the gap''. The training validated participants' experiences of birth and began to address the exclusion of Black and Indigenous people from birth work. However, participants expressed concerns about not being adequately positioned for sustained participation in birth work. CONCLUSIONS: Participants expressed receiving great value from the training programs. These trainings, which were fully subsidized, removed a financial barrier. However, these trainings do not address the exclusion of Black and Indigenous people from perinatal work or the lack or sustainable support systems for Black and Indigenous communities. This study makes several recommendations for future interventions.

Development of an occupational-therapy-led paediatric burn telehealth review clinic.

CONTEXT: Burns are a common injury in children. Rural and remote children with burn injuries are disadvantaged if their burns require hospitalisation and specialist rehabilitation. Most specialist burn rehabilitation is provided in regional or metropolitan cities by a multidisciplinary team. Therefore, rural and remote burn patients are required to travel to access these services. This project aimed to develop an Occupational Therapy (OT)-Led Paediatric Burn Telehealth Review Clinic (OTPB Clinic) at Townsville University Hospital (TUH) to provide ongoing rehabilitation to rural and remote children after burn injury closer to home. ISSUES: Local audits identified inequitable service delivery to children from rural and remote areas after burn injury. A project officer was appointed to develop the OTPB Clinic, including comprehensive guidelines to support sustainability. An expanded scope role was undertaken by the treating OT, and allied health assistants were engaged to promote efficient service delivery. LESSONS LEARNED: The OTPB Clinic commenced in 2017 and was evaluated using patient satisfaction surveys and number of clinical encounters pre- and post-implementation. During the implementation period, 28 rural or remote paediatric burn patients were reviewed. Review frequency increased from 20-week to 8-week intervals. Travel time was reduced by approximately 12 hours per appointment. Families identified numerous benefits of the clinic including continuity of care and reduced time away from work. Less than 4% of patients required re-engagement with paediatric surgeons for surgical intervention. The model has the potential to be transferred to other tertiary referral burns services.

Experiences of Support for Sexual Dysfunction in Men With Prostate Cancer: Findings From a U.K.-Wide Mixed Methods Study.

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. Watson E, Wilding S, Matheson L, et al. Experiences of Support for Sexual Dysfunction in Men With Prostate Cancer: Findings From a U.K.-Wide Mixed Methods Study. J Sex Med 2021;18:515-525.

Strategies for living well with hormone-responsive advanced prostate cancer-a qualitative exploration.

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.

Partners' attachment styles and overprotective support as predictors of patient outcomes in cardiac rehabilitation.

OBJECTIVE: This study investigates whether the adult attachment styles of support partners in a cardiac rehabilitation context predict their use of overprotective support strategies, and whether such overprotection in turn predicts lower self-efficacy and poorer program attendance in cardiac rehabilitation patients. RESEARCH METHOD: Participants were 69 partner-patient dyads, mostly older adults (mean age = 65 years) in long-term relationships (M = 35 years). During the first week of a 10-week cardiac rehabilitation program in a midsized rural hospital, participants completed self-report questionnaires that were used to assess partners' attachment styles and levels of overprotection, as well as patients' health-related self-efficacy. Attendance at each session of the program was then tracked by cardiac rehabilitation staff members. RESULTS: A moderated mediation model using bootstrapping showed that when partners were insecurely attached (high in both attachment avoidance and attachment anxiety), a mediational model held, such that more insecure partner attachment predicted more extensive use of overprotective support strategies, which in turn predicted lower patient self-efficacy for exercise and less-frequent program attendance. IMPLICATIONS: Implications for training support partners in more-effective support strategies are discussed. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

A Qualitative Exploration of Prostate Cancer Survivors Experiencing Psychological Distress: Loss of Self, Function, Connection, and Control.

PURPOSE: To explore the experiences of men with prostate cancer identified as having psychological distress and to identify factors influencing distress. PARTICIPANTS & SETTING: 28 men with prostate cancer diagnosed 18-42 months earlier, identified as having psychological distress on survey measures. METHODOLOGIC APPROACH: Semistructured telephone interviews were conducted. Thematic analysis using a framework approach was used. FINDINGS: Men with psychological distress had strong perceptions of loss toward self (identity, sexuality/masculinity, self-confidence), function (physical activities), connection (relational, social, community), and 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. Nurse- or peer-led interventions are required.

Adjustment strategies amongst black African and black Caribbean men following treatment for prostate cancer: Findings from the Life After Prostate Cancer Diagnosis (LAPCD) study.

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 and 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 men's 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.

Indigenous traumatic brain injury research: responding to recruitment challenges in the hospital environment.

BACKGROUND: Hospitals are common recruitment sites for injury and disability studies. However, the clinical and rehabilitation environment can create unique challenges for researchers to recruit participant populations. While there is growing injury and disability focused research involving Indigenous people to understand the types of services and supports required by this population to enhance their recovery experiences, there is limited knowledge of researchers' experiences implementing recruitment processes in the tertiary hospital environment. This paper reflects on the specific challenges of recruiting Indigenous patients following a traumatic brain injury from two tertiary hospitals in Northern Australia. METHODS: Between July 2016 and April 2018, research staff recruited eligible patients from one hospital in Queensland and one hospital in the Northern Territory. Qualitative records summarising research staff contact with patients, family members and clinical hospital staff were documented. These qualitative records, in addition to field trip notes and researcher reflections were reviewed to summarise the main challenges in gaining access to patients who fit the eligibility criteria. RESULTS: During the recruitment process, there were five main challenges encountered: (1) Patients discharging against medical advice from hospital; (2) Discharge prior to formal emergence from Post Traumatic Amnesia as per the Westmead Post Trauma Amnesia Scale; (3) Patients under adult guardianship orders; (4) Narrow participant eligibility criteria and (5) Coordinating around patient commitments and treatment. Details of how the recruitment processes were modified throughout the recruitment phase of the study to ensure greater access to patients that met the criteria are described. CONCLUSION: Based on our recruitment experiences, several recommendations are proposed for future TBI studies with Indigenous Australians. In addition to treatment, Indigenous TBI patients have wide range of needs that must be addressed while in hospital. Patient engagement and data collection processes should be flexible to respond to patient needs and the hospital environment. Employment of a centralized recruiter at each hospital site may help to minimise the challenges researchers need to navigate in the hospital environment. To improve recruitment processes in hospitals, it is essential for researchers examining other health or injury outcomes to describe their recruitment experiences.

The psychological impact of being on a monitoring pathway for localised prostate cancer: A UK-wide mixed methods study.

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 to 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 [SWEMWBS] and 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: A total of 3986 (23.8%) respondents were on AS/WW. Overall, psychological outcomes were similar or better in men on AS/WW compared with 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 that most men on AS/WW had adjusted positively. Men with poorer well-being were less able to accept, reframe positively and normalise their diagnosis, described receiving insufficient information and support, and reported 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 health care professionals is important.

'Very difficult for an ordinary guy': Factors influencing the quality of treatment decision-making amongst men diagnosed with localised and locally advanced prostate cancer: Findings from a UK-wide mixed methods study.

OBJECTIVES: To explore experiences 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. RESULTS: Within the context of TDM, 'drivers' included men's intra-personal preferences for decision-making responsibility or clinical direction, relative treatment intrusiveness or desire for excision, and work, personal and social life priorities; 'facilitators' were inter-personal mechanisms such as information and communication with clinicians to enact, but also sometimes challenge drivers. Drivers and facilitators can conflict, challenging patient empowerment. Men frequently undertook greater TDM responsibility than desired, without clinical recommendations; others received conflicting recommendations. Information on potential side-effects was often reportedly inadequate. Unchallenged preferences, absence of clinical recommendations and inadequate preparation for side-effects sometimes led to decision regret. CONCLUSIONS: Men are not empowered when expected to take more TDM responsibility than desired, when provided with conflicting recommendations, or when their potentially inappropriate preferences are unchallenged. PRACTICE IMPLICATIONS: TDM should involve men exercising preferences and priorities in discussion with clinicians. Clinicians should ensure patients do not receive conflicting recommendations.

Prostate cancer and the impact on couples: a qualitative metasynthesis.

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.

Urinary, bowel and sexual health in older men from Northern Ireland.

OBJECTIVES: To provide data on the prevalence of urinary, bowel and sexual dysfunction in Northern Ireland (NI), to act as a baseline for studies of prostate cancer outcomes and to aid service provision within the general population. SUBJECTS AND METHODS: A cross-sectional postal survey of 10 000 men aged ≥40 years in NI was conducted and age-matched to the distribution of men living with prostate cancer. The EuroQoL five Dimensions five Levels (EQ-5D-5L) and 26-item Expanded Prostate Cancer Composite (EPIC-26) instruments were used to enable comparisons with prostate cancer outcome studies. Whilst representative of the prostate cancer survivor population, the age-distribution of the sample differs from the general population, thus data were generalised to the NI population by excluding those aged 40-59 years and applying survey weights. Results are presented as proportions reporting problems along with mean composite scores, with differences by respondent characteristics assessed using chi-squared tests, analysis of variance, and multivariable log-linear regression. RESULTS: Amongst men aged ≥60 years, 32.8% reported sexual dysfunction, 9.3% urinary dysfunction, and 6.5% bowel dysfunction. In all, 38.1% reported at least one problem and 2.1% all three. Worse outcome was associated with increasing number of long-term conditions, low physical activity, and higher body mass index (BMI). Urinary incontinence, urinary irritation/obstruction, and sexual dysfunction increased with age; whilst urinary incontinence, bowel, and sexual dysfunction were more common among the unemployed. CONCLUSION: These data provide an insight into sensitive issues seldom reported by elderly men, which result in poor general health, but could be addressed given adequate service provision. The relationship between these problems, raised BMI and low physical activity offers the prospect of additional health gain by addressing public health issues such as obesity. The results provide essential contemporary population data against which outcomes for those living with prostate cancer can be compared. They will facilitate greater understanding of the true impact of specific treatments such as surgical interventions, pelvic radiation or androgen-deprivation therapy.

Supporting prostate cancer survivors in primary care: Findings from a pilot trial of a nurse-led psycho-educational intervention (PROSPECTIV).

PURPOSE: This study sought to test the acceptability and feasibility of a nurse-led psycho-educational intervention (NLPI) delivered in primary care to prostate cancer survivors, and to provide preliminary estimates of the effectiveness of the intervention. METHODS: Men who reported an ongoing problem with urinary, bowel, sexual or hormone-related functioning/vitality on a self-completion questionnaire were invited to participate. Participants were randomly assigned to the NLPI plus usual care, or to usual care alone. Recruitment and retention rates were assessed. Prostate-related quality of life, self-efficacy, unmet needs, and psychological morbidity were measured at baseline and 9 months. Health-care resource use data was also collected. An integrated qualitative study assessed experiences of the intervention. RESULTS: 61% eligible men (83/136) participated in the trial, with an 87% (72/83) completion rate. Interviews indicated that the intervention filled an important gap in care following treatment completion, helping men to self-manage, and improving their sense of well-being. However, only a small reduction in unmet needs and small improvement in self-efficacy was observed, and no difference in prostate-related quality of life or psychological morbidity. Patients receiving the NLPI recorded more primary care visits, while the usual care group recorded more secondary care visits. Most men (70%; (21/30)) felt the optimal time for the intervention was around the time of diagnosis/before the end of treatment. CONCLUSIONS: Findings suggest a nurse-led psycho-educational intervention in primary care is feasible, acceptable and potentially useful to prostate cancer survivors.

Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study.

BACKGROUND: Prostate cancer and its treatment may impact physically, psychologically and socially; affecting the health-related quality of life 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 postdiagnosis) in all 4 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 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 (eg, 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 and 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.