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 18-42 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

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

A qualitative metasynthesis exploring the impact of prostate cancer and its management on younger, unpartnered and gay men

Prostate cancer (PCa) can negatively impact on men’s sexual, urinary and emotional 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

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

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 &AMP; 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

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

‘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

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

OBJECTIVES: To provide intelligence on the prevalence of urinary, bowel and sexual dysfunction in Northern Ireland (NI) to act as a baseline for studies of prostate cancer (PCa) outcomes and to aid service provision within the general population. SUBJECTS AND METHODS: A cross-sectional postal survey of 10,000 men aged 40 and over in NI, age-matched to the distribution of men living with PCa. The EQ-5D-5L and EPIC-26 instruments were used to enable comparisons with PCa outcome studies. While representative of the PCa survivor population, the age-distribution of the sample differs from the general population, thus data were generalised to the NI population by excluding 40-59 year olds and applying survey weights. Results are presented as proportions reporting problems along with mean composite scores, with differences by respondent characteristics assessed using chi-square tests, ANOVA and multivariable log-linear regression. RESULTS: Among men aged 60 plus, 32.8% reported sexual dysfunction, 9.3% urinary dysfunction and 6.5% bowel dysfunction. 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 BMI. Urinary incontinence, urinary irritation/obstruction, and sexual dysfunction increased with age; while 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 PCa 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