The health impacts of blood donation: a systematic review of donor and non-donor perceptions.

BACKGROUND: The health and well-being of volunteer donors is of critical concern for blood collection agencies responsible for ensuring a stable supply of blood products. However, lay understandings of the impact of donating blood on health remain poorly understood. As lay perceptions are likely to influence critical decisions about donation, understanding these perceptions is key for informing evidence-based approaches to donor retention and recruitment. As such, we conducted a systematic review of the blood donation literature to identify donors' and non-donors' perceptions of the short and longer-term physiological health effects of whole-blood and/or blood product donation. MATERIALS AND METHODS: This review was conducted in line with PRISMA guidelines. Studies published from January 1995 to February 2021 were included. Perceptions were defined as both experiences and beliefs. Psychological effects were considered outside the scope of the review. RESULTS: A total of 247 studies were included. Most studies (89.5%) had donation-related health perceptions as a background rather than a central (10.5%) focus, and they were only assessed in relation to whole blood donation. More results focused on health-related beliefs than experiences (82 vs 18%), specific rather than general beliefs and experiences (80 vs 20%) and more frequently examined negative than positive beliefs and experiences (83 vs 17%). The most commonly studied and reported specific negative beliefs related to increased risk of infectious disease, reduced vitality, vasovagal reactions and low iron. Most studies examining specific negative beliefs were conducted in Asian countries. DISCUSSION: Findings reinforce that lay perspectives on how donation impacts health are under-researched, and it is difficult to know how important these are in informing critical decisions about donation for donors and non-donors. We suggest that further research with donation-related health beliefs and experiences as the central focus is needed to provide insights to inform communications with donors and the public.

"Why don't you want my poop?" Willing stool donor's experiences of being ineligible to donate intestinal microbiota.

BACKGROUND: Blood collection agencies (BCAs) hosting stool (fecal or poo) donor programs report high rates of donor deferral. However, the impact of deferral on willing donors, in terms of personal well-being and future engagement with BCAs, remains unexplored. Accordingly, we surveyed those attempting to donate intestinal microbiota about their experience of being ineligible. STUDY DESIGN AND METHODS: A total of 196 potential stool donors from Australia's BCA (>90% blood/blood product donors) completed the first stage of eligibility screening and then an online survey once notified of their ineligibility. Respondents reported motives for donating, perceptions of screening and improvements needed, experience of being told they are ineligible, and their feelings about this. RESULTS: Over 80% of participants were ineligible to donate. Of those ineligible, 58% did not know why they were ineligible resulting in potentially future eligible donors being permanently lost. Motives (>5%) included helping others, being a human substance donor, understanding benefits, curiosity/novelty, and helping science/research. Participants identified they needed clear and timely information during screening and a specific reason for their ineligibility. Participants commonly experienced disappointment, confusion, and calm in response to being ineligible. DISCUSSION: BCAs need strategies to mitigate the disappointment of ineligible donors, maintain satisfaction with BCAs, and preserve donor identity since many ineligible donors give multiple human substances. BCAs should provide more information about eligibility criteria during early screening stages to reduce disappointment and give personalized information about ineligibility to resolve the confusion. Offering alternative opportunities to give may reduce disappointment and increase ineligible donor engagement.

Physical activity behaviour change in people living with and beyond cancer following an exercise intervention: a systematic review.

PURPOSE: Exercise interventions can increase physical activity and wellbeing of people living with/beyond cancer. However, little is known about maintenance of physical activity in this population ≥ 6 months post-exercise intervention, when theoretical evidence suggests behaviour maintenance occurs. Study aims are to (i) systematically review maintenance of physical activity ≥ 6-month post-exercise intervention, and (ii) investigate the influence of behaviour change techniques (BCTs) on physical activity maintenance in people living with/beyond cancer. METHODS: CINAHL, CENTRAL, EMBASE and PubMed databases were searched for randomised controlled trials up to August 2021. Trials including adults diagnosed with cancer that assessed physical activity ≥ 6 months post-exercise intervention were included. RESULTS: Of 142 articles assessed, 21 reporting on 18 trials involving 3538 participants were eligible. Five (21%) reported significantly higher physical activity ≥ 6 months post-exercise intervention versus a control/comparison group. Total number of BCTs (M = 8, range 2-13) did not influence intervention effectiveness. The BCTs Social support, Goal setting (behaviour), and Action planning, alongside supervised exercise, were important, but not sufficient, components for long-term physical activity maintenance. CONCLUSIONS: Evidence for long-term physical activity maintenance post-exercise intervention for people living with/beyond cancer is limited and inconclusive. Further research is required to ensure the physical activity and health benefits of exercise interventions do not quickly become obsolete. IMPLICATIONS FOR CANCER SURVIVORS: Implementation of the BCTs Social support, Goal setting (behaviour), and Action planning, alongside supervised exercise, may enhance physical activity maintenance and subsequent health outcomes in people living with/beyond cancer.

Understanding Mothers' Experiences of Being Ineligible to Donate Their Milk to a Not-for-Profit Milk Bank.

Background: Donor milk banks have strict donor screening criteria to ensure that donor milk is safe for premature or hospitalized babies. Yet little evidence is available to understand how potential donors, who are often breastfeeding their own infants, experience being ineligible ("deferred") to donate their milk to a milk bank. Materials and Methods: Interviews were conducted with 10 mothers who were permanently or temporarily deferred from donating to a large, not-for-profit milk bank in Australia. Interviews focused on becoming a donor and being deferred, meanings of deferral, impact of deferral on feeding own infant, and improving the deferral process. Results: Thematic analysis of interviews identified nine themes: (1) donation as a solution to wasting milk; (2) eligibility questions were acceptable and understandable; (3) more information early on allows self-deferral; (4) deferral is not always clear; (5) deferral is disappointing but does not prevent future donation; (6) deferral did not prevent feeding own infant; (7) early information enables preparation for donation; (8) slow communication disrupts perfect timing to donate; and (9) alternatives to wasting milk. Conclusions: Milk banks have a duty of care to both milk recipients and donors. While mothers who want to donate milk are disappointed by deferrals, clear communication protects their breastfeeding relationships with their own infants. Milk banks can improve their screening processes by providing information up-front and ensuring timely contact with mothers. Mothers can then make informed decisions about donating and not feel as if their milk and resources are "wasted."

A review of whole-blood donors' willingness, motives, barriers and interventions related to donating another substance of human origin.

Diversification of blood collection agencies' (BCAs) core business requires donors to donate substances of human origin (SoHO) beyond whole-blood. Whole-blood donors are assumed to be willing to convert to donate other SoHO as well as whole-blood. However, no reviews consider the evidence on conversion (i.e., willingness/intention, behaviour, retention, attrition). This rapid review provides a narrative synthesis of whole-blood donors' conversion to another SoHO, characteristics contributing to conversion, motives and deterrents, and interventions encouraging conversion. Sixty-five studies were reviewed. Most were cross-sectional and examined whole-blood donor conversion to organ (willingness/pledge for deceased donation), plasma or stem cell donation. Most examined conversion rather than characteristics contributing to conversion, motives, deterrents or interventions. Whole-blood donors appear willing to donate another SoHO, yet conversion rates are unclear. Besides self-efficacy, there is little consistency in reported characteristics of donors converting, and few theories applied to understand characteristics encouraging conversion. Intrinsic (altruism, self-esteem, curiosity) and extrinsic (perceived need, service experience, direct requests) motives and barriers (lifestyle, fearing reduced health) appear important and require further research. Interventions encouraging conversion need replication and may include in-person, in-centre approaches, raising awareness of the functional benefits of other SoHO (high need, usefulness), and developing promotional materials that pique donors' curiosity, invite questions, and encourage donor-initiated conversations about conversion. Centralising BCAs as a single business or partnering with other organisations appears mutually beneficial to encourage conversion and sustainable panels/resources. Research is needed to understand the impact of encouraging conversion on donors and organisations, and identify optimal management strategies for multi-SoHO donors.

Australian Perspectives on Opt-In and Opt-Out Consent Systems for Deceased Organ Donation.

Introduction: As many countries change to opt-out systems to address organ shortages, calls for similar reform in Australia persist. Community perspectives on consent systems for donation remain under-researched, therefore Australian perspectives on consent systems and their effectiveness in increasing donation rates were explored. Design: In this descriptive cross-sectional study, participants completed a survey presenting opt-in, soft opt-out, and hard opt-out systems, with corresponding descriptions. Participants chose the system they perceived as most effective and described their reasoning. Results: Participants (N = 509) designated soft opt-out as the most effective system (52.3%; hard opt-out 33.7%; opt-in 13.7%). Those who identified with an ethnic/cultural group or were not registered had greater odds of choosing opt-out. Six themes identified in thematic analysis reflected their reasoning: (1) who decides (individual, shared decision with family); (2) right to choose; (3) acceptability (ethics, fairness); and utility in overcoming barriers for (4) individuals (apathy, awareness, ease of donating, fear/avoidance of death); (5) family (easier family experience, family veto); (6) society (normalizing donation, donation as default, expanding donor pool). Choice and overcoming individual barriers were more frequently endorsed themes for opt-in and opt-out, respectively. Discussion: Results suggested the following insights regarding system effectiveness: uphold/prioritize individual's recorded donation decision above family wishes; involve family in decision making if no donation preference is recorded; retain a register enabling opt-in and opt-out for unequivocal decisions and promoting individual control; and maximize ease of registering. Future research should establish whether systems considered effective are also acceptable to the community to address organ shortages.

Eligible blood donors' decisions about donating stool for fecal microbiota transplantation: Does ambivalence play a role?

Blood collection agencies (BCAs) are expanding core business by inviting blood donors to donate stool for fecal microbiota transplantation (FMT). However, whether blood donors also want to donate stool is unclear since, despite its benefits, stool donation is viewed by many as unpleasant. This study examined the prevalence, contributors to, and role of these mixed feelings (ambivalence) in stool donation intentions. STUDY DESIGN AND METHODS: This cross-sectional study surveyed Australian residents aged 18 years or more who believed themselves eligible to donate blood and met broad criteria for prescreening as a stool donor (eg, healthy, not taking medication). Survey questions assessed attitude, norms, self-efficacy, motives, disgust, ambivalence, and intentions to donate stool. RESULTS: A total of 382 eligible blood donors aged not more than 50 years (mean, 28.71 years; 48% female, 62% "healthy" body mass index) participated. Six percent indicated no ambivalence about donating stool. In regression, significant determinants of ambivalence were less awareness of FMT, lower self-efficacy, motivated by ensuring that stool is available for loved ones, and more disgust about stool donation. Higher ambivalence contributed to decreased donation intention. Self-efficacy and disgust differentiated participants with moderate ambivalence, a group likely responsive to intervention, from those with low or high ambivalence. CONCLUSION: Ambivalence about donating stool was common among eligible blood donors. BCAs should raise awareness about stool donation and FMT before requesting donation. BCAs may increase cost savings and donor retention by giving clear guidance about donation requirements and implementing processes that build confidence. Early screening of potential donors for ambivalence and disgust will enable BCAs to provide decision support.

Men's sexual help-seeking and care needs after radical prostatectomy or other non-hormonal, active prostate cancer treatments.

OBJECTIVE: To examine prostate cancer (PCa) survivors' sexual help-seeking intentions, behaviours, and unmet needs. METHODS: In this prospective cohort study, men who underwent active, non-hormonal treatment completed baseline (N = 558) and 6-month follow-up (N = 387) questionnaires. Theory of planned behaviour (TPB) constructs (sexual help-seeking intention, perceived behavioural control (PBC), subjective norm, attitude), masculine values (e.g., sexual importance/priority, emotional self-reliance), sex life and functioning, sexual supportive care needs, distress (anxiety, depression), and sexual help-seeking behaviour were assessed. RESULTS: Most men (M age = 64.6 years; M years post-diagnosis = 4.0) received prostatectomy (93%), reported severe erectile dysfunction (52%), ≥ 1 unmet sexual care need (66%), and sought help from a doctor (baseline 52%, follow-up 42%). Sexual care needs were significantly associated with poorer erectile function, reduced satisfaction with sex-life, valuing sex as important/integral to identity (masculine values), and increased depression (p ≤ 0.001). Sexual help-seeking intentions were significantly associated with valuing sex as important/integral to identity, recent help-seeking, greater confidence/control, perceiving support from important others, and positive attitudes, for sexual help-seeking (p < 0.001). Significant predictors of sexual help-seeking (follow-up) were baseline intentions, recent help-seeking (p < 0.001), and increased anxiety (p < 0.05). CONCLUSIONS: Men's unmet sexual care needs, sexual help-seeking intentions, and behaviour appear driven by the importance/value attributed to sex, distress, positive feelings, support from others, and confidence for help-seeking. Psychosocial providers are well-placed to address men's concerns, yet few sought their assistance. Interventions to improve men's access to effective sexual care are needed, particularly focused on reframing masculine values about the importance of sex and leveraging TPB-based predictors of help-seeking.

Determinants of community members' willingness to donate stool for faecal microbiota transplantation.

Universal stool banks rely on, but face difficulties recruiting, community volunteers to donate stool for faecal microbiota transplantation (FMT) to effectively treat recurrent Clostridioides difficile. This study sought to identify determinants of community members' willingness to donate stool to guide donor recruitment. 397 Australian residents (52% male, 47% 21-30 years, 63% university educated) completed a survey to gauge willingness to donate stool, bowel habits, information needs, attitudes, barriers, and motives for donation. Most reported regular bowel movements (BMs; 90%), morning BMs (63%), BMs ≤5 minutes duration (67%), and some discomfort doing BMs in public restrooms (69%). Less than half were willing to donate stool in-centre (45% willing) or at home (48%). Important information needs identified by >80% were convenience and travel requirements associated with donation. Main barriers were logistics, capabilities to donate, disgust (e.g., donation process), and discomfort (e.g., privacy). The main motivator was altruism, with compensation secondary. Linear regression models identified less discomfort doing BMs in public restrooms (ß = -0.15), understanding benefits to patients (ß = 0.15), placing less importance on understanding the donation process (ß = -0.13), and positive attitudes (ß = 0.56) as determinants of willingness to donate in-centre. Understanding benefits to self (ß = 0.11) and patients (ß = 0.24), placing less importance on understanding the donation purpose (ß = -0.19), and positive attitudes (ß = 0.50) determined willingness to donate at home. Stool banks should consider donor's bowel habits, comfort donating in-centre, and information needs early in recruitment; and implement flexible logistics for potential donors who face time constraints and limited access to stool banks.

Exploring predictors of Australian community members' blood donation intentions and blood donation-related behavior during the COVID-19 pandemic.

BACKGROUND: With the coronavirus disease 2019 (COVID-19) pandemic continuing to accelerate and blood collection agencies (BCAs) warning of shortages, it is critical to identify the current determinants of donor behavior for donors and nondonors. STUDY DESIGN AND METHODS: In May and June 2020, Australian residents who believed themselves eligible to donate blood responded to measures assessing constructs from an integrated protection motivation theory, organizational trust, and theory of planned behavior framework, with donor status also assessed. RESULTS: A total of 507 residents (47% male, mean age 28.69 years; 272 had donated/attempted to donate) participated. A revised structural equation model was a good fit to these data. In this model, perceived risk, severity, anxiety, and response cost associated with donating during the COVID-19 pandemic underpinned threat appraisals, while response efficacy, self-efficacy, and attitude toward donating during COVID-19 informed coping appraisals. Trust in the BCA predicted lower threat and higher coping appraisals, and higher coping appraisals predicted stronger subjective norms. Intention to donate during the COVID-19 pandemic was positively predicted by subjective norm and self-efficacy. Donation-related behavior was positively predicted by intention, with this relationship stronger for nondonors than donors. CONCLUSION: Self-efficacy and approval from others, underpinned by coping appraisals and organizational trust, play a critical role in intentions to donate. BCAs that focus on maintaining trust with (potential) donors, providing clear messaging stating the minimal threat of contracting COVID-19 from donating and the protective measures in place, and showing how donating is achievable, may help to ensure a safe and secure blood supply throughout the COVID-19 pandemic.

The role of masculinities in psychological and emotional help seeking by men with prostate cancer.

OBJECTIVE: To assess the impact of demographic characteristics and masculinities on seeking support for psychosocial care needs in men with prostate cancer. METHODS: Prostate cancer survivors (n = 225) completed mail-out surveys measuring psychological care needs, masculinities, and psychological and emotional help-seeking intention and behaviour at 6- and 12-month follow-ups. RESULTS: Older age was associated with seeking help from a general practitioner (GP), χ2 (1,225) = 4.72, P = .03, and being born overseas was associated with seeking peer support (1,225) = 7.13, P = .01. Men with higher levels of optimistic action who reported moderate to high unmet psychological need were less likely to seek help for psychological and emotional concerns at 6- (odds ratio [OR] = 0.06, confidence interval [CI], 0.01-0.46) and 12-month (OR = 0.13, CI, 0.26-0.65) follow-ups. CONCLUSIONS: Optimistic action may explain why some men with prostate cancer fail to seek help for their psychological care needs. Clinicians should be aware that men with chronic illness who appear to approach challenges with optimistic action may in fact be less likely to seek psychological help when needed.

Measuring Masculinity in Men With Chronic Disease.

The Masculinity in Chronic Disease Inventory (MCD-I) is a new measure of internalized masculine beliefs previously validated in the context of prostate cancer. The present study assessed the validity of the MCD-I in men with other chronic diseases to explore its potential for wider application. A cross-sectional survey of 633 men aged 47-93 years old (M = 68 years), of whom 68% reported ≥2 chronic conditions, was conducted. Measures included the MCD-I and Erectile Function. Exploratory and confirmatory factor analyses were performed followed by tests for discriminant validity. A five-factor structure was confirmed that explained 60% of the variance, with good to excellent reliabilities (α = 0.68-0.93) for the domains of Optimistic Action, Sexual Importance/Priority, Family Responsibilities, Emotional Self-Reliance, and Strength/Fitness. The MCD-I is a valid measure of internalized masculine beliefs for men with chronic disease that appears sensitive to age and to sexual health. The tailoring of health services for men can be guided by MCD-I outcomes to ensure gender-sensitized men's health interventions.

Psychosocial predictors of hope two years after diagnosis of colorectal cancer: Implications for nurse-led hope programmes.

OBJECTIVE: To prospectively explore predictors of hope in people with colorectal cancer at 24 months post-diagnosis. METHODS: The present study is a secondary analysis of two waves within a longitudinal survey of patients newly diagnosed with colorectal cancer in Queensland, Australia. Baseline predictors (sociodemographic, disease, lifestyle characteristics, cancer threat appraisal and quality of life domains) were measured via mailed surveys and telephone interviews at 6 months post-diagnosis. Hope was measured via mailed surveys at 24 months post-diagnosis. RESULTS: At 24 months post-diagnosis, 1,265 participants completed the hope measure. Hope was predicted by higher education, physical activity, cancer threat appraisal and each quality of life domain (i.e., physical, social, emotional and functional well-being; and colorectal cancer-specific concerns), which explained 23.63% of the total variance in hope, F(14, 1,081) = 23.89, p < 0.001. CONCLUSION: At 24 months post-diagnosis, hope was associated with greater functional, social and emotional well-being, and less threatened cancer appraisals. As hope programmes continue to be developed, designers should include activities that increase well-being and reduce cancer threat appraisal for people with colorectal cancer.

A prospective and population-based inquiry on the use and acceptability of peer support for women newly diagnosed with breast cancer.

The degree to which peer support is used and accepted as a supportive care approach by women with breast cancer is unclear. We examine peer support use across three major modalities (i.e. support groups, online platforms, one-on-one) and identify enablers and barriers to peer support using the beliefs framework of the theory of planned behaviour. A population-based sample of women newly diagnosed with breast cancer (n = 3105) who were on average 54.08 weeks since diagnosis completed mailed surveys at baseline measuring beliefs about peer support and intention. Peer support use was measured via telephone interview at baseline and prospectively at 12-month follow-up (n = 2780). In all, 37% of women had used at least one peer support service since diagnosis (support group = 20%, online = 18%, one-on-one = 10%). A path analysis examined what beliefs enabled or acted as barriers to peer support use at follow-up adjusting for past behaviour (i.e. baseline use), sociodemographic characteristics, and treatment. In order of relative strength, enablers included beliefs that peer support is an outlet for honest expression of feelings (ß = .35), a source of empathy (ß = .30), approved by doctors (ß = .07), and approved by family/partner (ß = .04). Barriers were beliefs that it encourages dwelling about breast cancer (ß = - .06) and involves exposure to negative stories about this disease (ß = - .04). Strategies which communicate the potential emotional support benefits of a shared illness experience and social approval by others, particularly the medical profession, may help to promote acceptance of peer support and encourage service uptake in breast cancer.

The validity of the Distress Thermometer in female partners of men with prostate cancer.

Female partners of prostate cancer (PCa) survivors experience heightened psychological distress that may be greater than that expressed by PCa patients. However, optimal approaches to detect distressed, or at risk of distress, partners are unclear. This study applied receiver operating characteristics analysis to evaluate diagnostic accuracy, sensitivity and specificity of the Distress Thermometer (DT) compared to widely used measures of general (Hospital Anxiety and Depression Scale) and cancer-specific (Impact of Events Scale-Revised) distress. Participants were partners of men with localised PCa (recruited around diagnosis) about to undergo or had received surgical treatment (N = 189), and partners of men diagnosed with PCa who were 2-4 years post-treatment (N = 460). In both studies, diagnostic utility of the DT overall was not optimal. Although area under the curve scores were acceptable (ranges: 0.71-0.92 and 0.83-0.94 for general and cancer-specific distress, respectively), sensitivity, specificity and optimal DT cut-offs for partner distress varied for general (range: ≥2 to ≥5) and cancer-specific (range: ≥3 to ≥5) distress both across time and between cohorts. Thus, it is difficult to draw firm conclusions about the diagnostic capabilities of the DT for partners or recommend its use in this population. More comprehensive screening measures may be needed to detect partners needing psychological intervention.

Geographical Variations in the Clinical Management of Colorectal Cancer in Australia: A Systematic Review.

BACKGROUND: In Australia, cancer survival is significantly lower in non-metropolitan compared to metropolitan areas. Our objective was to evaluate the evidence on geographical variations in the clinical management and treatment of colorectal cancer (CRC). METHODS: A systematic review of published and gray literature was conducted. Five databases (CINAHL, PubMed, Embase, ProQuest, and Informit) were searched for articles published in English from 1990 to 2018. Studies were included if they assessed differences in clinical management according to geographical location; focused on CRC patients; and were conducted in Australia. Included studies were critically appraised using a modified Newcastle-Ottawa Scale. PRISMA systematic review reporting methods were applied. RESULTS: 17 articles met inclusion criteria. All were of high (53%) or moderate (47%) quality. The evidence available may suggest that patients in non-metropolitan areas are more likely to experience delays in surgery and are less likely to receive chemotherapy for stage III colon cancer and adjuvant radiotherapy for rectal cancer. CONCLUSION: The present review found limited information on clinical management across geographic regions in Australia and the synthesis highlights significant issues both for data collection and reporting at the population level, and for future research in the area of geographic variation. Where geographical disparities exist, these may be due to a combination of patient and system factors reflective of location. It is recommended that population-level data regarding clinical management of CRC be routinely collected to better understand geographical variations and inform future guidelines and policy.

Cancer care in regional Australia from the health professional's perspective.

PURPOSE: This study aimed to identify the factors which health professionals believe influence clinical care and outcomes for people with cancer in regional areas of Australia. METHODS: Twelve semi-structured interviews were conducted with a variety of health professionals. Interview questions explored health professional's perspectives on barriers to cancer care for patients, factors which influence clinical care, and access to support in regional areas. Data were interpreted using an inductive thematic analysis approach. RESULTS: Two global themes were identified: rural culture and the health system. Within these global themes, health professionals discussed barriers to cancer care in regional areas, predominantly associated with travel, limited workforce, and poor communication within the health system. Participants also noted many positive aspects of cancer care in regional areas, including more personalised care for the patients and faster career progression for professionals. CONCLUSIONS: Despite several strategies to improve rural cancer care in recent times, including innovative models of care and increased infrastructure, health professionals still perceive many barriers to cancer care in regional Australia. These are predominantly associated with patient demographics, travel difficulties, and inadequate governance. However, there are also many notable benefits to receiving care in regional areas which have been absent from previous literature. These positive factors should be incorporated in efforts to enhance regional cancer care through the recruitment of health professionals to regional areas and development of regional community support networks.

Experiences of Australian men diagnosed with advanced prostate cancer: a qualitative study.

OBJECTIVE: To explore men's lived experience of advanced prostate cancer (PCa) and preferences for support. DESIGN: Cross-sectional qualitative study applying open-ended surveys and interviews conducted between June and November 2016. Interviews audio-recorded and transcribed verbatim and analysed from an interpretive phenomenological perspective. SETTING: Australia, nation-wide. PARTICIPANTS: 39 men diagnosed with advanced PCa (metastatic or castration-resistant biochemical regression) were surveyed with 28 men subsequently completing a semistructured in depth telephone interview. RESULTS: Thematic analysis of interviews identified two organising themes: lived experience and supportive care. Lived experience included six superordinate themes: regret about late diagnosis and treatment decisions, being discounted in the health system, fear/uncertainty about the future, acceptance of their situation, masculinity and treatment effects. Supportive care included five superordinate themes: communication, care coordination, accessible care, shared experience/peer support and involvement of their partner/family. CONCLUSIONS: Life course and the health and social context of PCa influence men's experiences of advanced disease. Multimodal interventions integrating peer support and specialist nurses are needed that more closely articulate with men's expressed needs.

Predictors of long-term distress in female partners of men diagnosed with prostate cancer.

OBJECTIVE: Female partners of men with prostate cancer (PCa) experience heightened psychological distress; however, long-term distress for this group is not well described. We examined partner's psychological and cancer-specific distress over 2 years and predictors of change. METHODS: A cohort of 427 female partners (63% response; mean age 62.6 y) of PCa survivors completed baseline (2-4 y post-PCa treatment) assessments of anxiety, depression, and cancer-specific distress and were followed up at 6, 12, 18, and 24 months. Caregiver burden, threat and challenge appraisal, self-efficacy, and dyadic adjustment were assessed as potential predictors of distress. RESULTS: Over time, 23% to 25% of women reported anxiety; 8% to 11% depression; 5% to 6% high cancer-specific distress. Higher caregiver burden and more threat appraisals were associated with increased distress, anxiety, depression, and cancer-specific distress over time. Higher dyadic adjustment over time and more challenge appraisals at 24 months were associated with less distress, anxiety, and depression. Increased partner self-efficacy was associated with lower distress and depression at baseline. CONCLUSIONS: A substantial subgroup of partners experience ongoing anxiety, with depression less prevalent but also persistent. Caregiver burden, partner self-efficacy, threat, and challenge appraisals present as potential supportive care targets.