Acceptability of a virtual prostate cancer survivorship care model in rural Australia: A multi-methods, single-centre feasibility pilot.

DESIGN: A multi-methods, single-centre pilot comprising a quasi-experimental pre-/post-test design and an exploratory qualitative study. SETTING: A rural Australian hospital and health service. PARTICIPANTS: Men newly diagnosed with localised prostate cancer who were scheduled to undergo, or had undergone, radical or robotic prostatectomy surgery within the previous 3 months. INTERVENTION: The intervention comprised a 12-week virtual care program delivered via teleconference by a specialist nurse, using a pre-existing connected care platform. The program was tailored to the post-operative recovery journey targeting post-operative care, psychoeducation, problem-solving and goal setting. MAIN OUTCOME MEASURES: Primary outcome: program acceptability. SECONDARY OUTCOMES: quality of life; prostate cancer-related distress; insomnia severity; fatigue severity; measured at baseline (T1); immediately post-intervention (T2); and 12 weeks post-intervention (T3). RESULTS: Seventeen participants completed the program. The program intervention showed very high levels (≥4/5) of acceptability, appropriateness and feasibility. At T1, 47% (n = 8) of men reported clinically significant psychological distress, which had significantly decreased by T3 (p = 0.020). There was a significant improvement in urinary irritative/obstructive symptoms (p = 0.030) and a corresponding decrease in urinary function burden (p = 0.005) from T1 to T3. CONCLUSIONS: This pilot has shown that a tailored nurse-led virtual care program, incorporating post-surgical follow-up and integrated low-intensity psychosocial care, is both acceptable to rural participants and feasible in terms of implementation and impact on patient outcomes.

Effectiveness of educational and psychological survivorship interventions to improve health-related quality of life outcomes for men with prostate cancer on androgen deprivation therapy: a systematic review.

OBJECTIVES: Androgen deprivation therapy (ADT), a common treatment for prostate cancer, has debilitating impacts on physical and psychological quality of life. While some interventions focus on managing the physical side effects of ADT, there is a paucity of interventions that also address psychosocial and educational needs. The objective of this systematic review was to identify psychological and educational survivorship interventions targeting health-related quality of life (HRQoL) outcomes in men on ADT. DESIGN: A systematic review of randomised controlled trials. DATA SOURCES: Web of Science, Cochrane, EBSCO Host, PubMed, SCOPUS from inception (1984) to 28 January 2023. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Psychological and/or educational survivorship interventions targeting HRQoL outcomes for men on ADT; minimum 80% of participants on ADT; used a validated HRQoL outcome measure; published in English in a peer-reviewed journal. DATA EXTRACTION AND SYNTHESIS: Data extraction using pre-specified study criteria was conducted. Heterogeneity of eligible studies precluded a meta-analysis. RESULTS: A total of 3381 publications were identified with eight meeting the criteria. Interventions were either psychological with a cognitive behavioural approach (n=4), or educational with (n=2) or without (n=2) psychoeducational components.Two studies reported a statistically significant improvement using a specific HRQoL measure. Most studies were not adequately powered and/or included small sample sizes limiting the conclusions that can be drawn on effectiveness. The most effective interventions were (i) individually based, (ii) educational with a psychoeducational component, (iii) supplemented with information packages and/or homework and (iv) included personalised needs assessments. CONCLUSION: There is a paucity of literature reporting psychological and educational survivorship interventions targeting HRQoL outcomes for men on ADT. What is urgently needed are person-centred survivorship interventions that are flexible enough to identify and address individual needs, taking into account the impact ADT has on both physical and psychological quality of life. PROSPERO REGISTRATION NUMBER: CRD4202230809.

Prostate Cancer Survivorship Essentials for men with prostate cancer on androgen deprivation therapy: protocol for a randomised controlled trial of a tele-based nurse-led survivorship care intervention (PCEssentials Hormone Therapy Study).

INTRODUCTION: Androgen deprivation therapy (ADT) is commonly used to treat men with locally advanced or metastatic prostate cancer. Men receiving ADT experience numerous side effects and frequently report unmet supportive care needs. An essential part of quality cancer care is survivorship care. To date, an optimal effective approach to survivorship care for men with prostate cancer on ADT has not been described. This protocol describes a randomised trial of tele-based nurse-led survivorship that addresses this knowledge gap: (1) determine the effectiveness of a nurse-led survivorship care intervention (PCEssentials), relative to usual care, for improving health-related quality of life (HR-QoL) in men with prostate cancer undergoing ADT and (2) evaluate PCEssentials implementation strategies and outcomes, including cost-effectiveness, compared with usual care. METHODS AND ANALYSIS: This is an effectiveness-implementation hybrid (type 1) trial with participants randomised to one of two arms: (1) minimally enhanced usual care and (2) nurse-led prostate cancer survivorship essentials (PCEssentials) delivered over four tele-based sessions, with a booster session 5 months after session 1. Eligible participants are Australian men with prostate cancer commencing ADT and expected to be on ADT for a minimum of 12 months. Participants are followed up at 3, 6 and 12 months postrecruitment. Primary outcomes are HR-QoL and self-efficacy. Secondary outcomes are psychological distress, insomnia, fatigue and physical activity. A concurrent process evaluation with participants and study stakeholders will be undertaken to determine effectiveness of delivery of PCEssentials. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Metro South Health HREC (HREC/2021/QMS/79429). All participants are required to provide written informed consent. Outcomes of this trial will be published in peer-reviewed journals. The findings will be presented at conferences and meetings, local hospital departments, participating organisations/clinical services, and university seminars, and communicated at community and consumer-led forums. TRIAL REGISTRATION NUMBER: ACTRN12622000025730.

Disease mapping: Geographic differences in population rates of interventional treatment for prostate cancer in Australia.

BACKGROUND: Treatment decisions for men diagnosed with prostate cancer depend on a range of clinical and patient characteristics such as disease stage, age, general health, risk of side effects and access. Associations between treatment patterns and area-level factors such as remoteness and socioeconomic disadvantage have been observed in many countries. OBJECTIVE: To model spatial differences in interventional treatment rates for prostate cancer at high spatial resolution to inform policy and decision-making. METHODS: Hospital separations data for interventional treatments for prostate cancer (radical prostatectomy, low dose rate and high dose rate brachytherapy) for men aged 40 years and over were modelled using spatial models, generalised linear mixed models, maximised excess events tests and k-means statistical clustering. RESULTS: Geographic differences in population rates of interventional treatments were found (p<0.001). Separation rates for radical prostatectomy were lower in remote areas (12.2 per 10 000 person-years compared with 15.0-15.9 in regional and major city areas). Rates for all treatments decreased with increasing socioeconomic disadvantage (radical prostatectomy 19.1 /10 000 person-years in the most advantaged areas compared with 12.9 in the most disadvantaged areas). Three groups of similar areas were identified: those with higher rates of radical prostatectomy, those with higher rates of low dose brachytherapy, and those with low interventional treatment rates but higher rates of excess deaths. The most disadvantaged areas and remote areas tended to be in the latter group. CONCLUSIONS: The geographic differences in treatment rates may partly reflect differences in patients' physical and financial access to treatments. Treatment rates also depend on diagnosis rates and thus reflect variation in investigation rates for prostate cancer and presentation of disease. Spatial variation in interventional treatments may aid identification of areas of under-treatment or over-treatment.

Efficacy and Feasibility of Presurgical Exercise in Bladder Cancer Patients Scheduled for Open Radical Cystectomy.

PURPOSE: This study aimed to examine the feasibility and potential efficacy of presurgical exercise in patients with bladder cancer scheduled for open radical cystectomy with follow-up postsurgery. METHODS: Prospective single-group design with assessments at baseline, presurgery, and 3 months postsurgery was used in this study. Multimodal supervised resistance and aerobic exercise was undertaken 2-3 d·wk -1 at moderate intensity for a median of 3.5 wk (interquartile range [IQR] = 1.3-5.6). Feasibility was assessed by recruitment and completion rates, patient safety, program tolerance, adherence, and compliance. Lean and fat mass were assessed by dual-energy x-ray absorptiometry, physical function by a battery of tests (chest press and leg press strength, 6-min walk test [6MWT], timed up-and-go, repeated chair rise), and quality of life (QoL), psychological distress, and body image by questionnaire. Hospital length of stay (LOS) and complications were assessed by medical records. RESULTS: Thirty-seven patients were referred with 20 recruited (67.3 ± 12.2 yr) and a presurgery intervention completion rate of 80% (16 of 20). The individual median program adherence was 100.0% (IQR = 89.4-100.0) with compliance of 100.0% (IQR = 90.5-100.0) for resistance exercise and 81.8% (IQR = 55.0-99.5) for aerobic exercise. There were no exercise-related adverse events. Body composition did not change presurgery; however, there were improvements ( P < 0.05) in leg press strength (16%), 6MWT distance (8%), timed up-and-go (12%), chair rise (10%), and multiple QoL domains including mental health. Median LOS was 8.0 d (IQR = 7.0, 15.0). Postsurgery, there were declines in components of QoL and apparent body image dissatisfaction. CONCLUSIONS: A preradical cystectomy exercise program is feasible, safe, and well tolerated with improvements in physical function and QoL. Supervised multimodal exercise in bladder cancer patients before cystectomy can enhance physical and mental health potentially buffering the effects of surgery.

Acceptability of a virtual prostate cancer survivorship care model in regional Australia: A qualitative exploratory study.

OBJECTIVE: To assess the acceptability of a nurse-led prostate cancer survivorship intervention adapted for virtual delivery and tailored to post-surgical care, in a regional Australian hospital and health service. METHODS: A qualitative exploratory study using the Theoretical Framework of Acceptability (TFA). RESULTS: Twenty-two participants took part in a semistructured interview comprising men who had completed the program (n = 16) and health professionals/service stakeholders involved in program delivery (n = 6). Acceptability of this virtual prostate cancer survivorship care program was very high across all constructs of the TFA, from the perspectives of both program recipients and those delivering the program. The quality of care received was seen as superior to what men had experienced previously (burden, opportunity costs). The time afforded by the regularly scheduled video-consultations allowed men to come to terms with the recovery process in their own time (self-efficacy), and provided an ongoing sense of support and access to care outside the consultation (ethicality). Clinically, the program improved care co-ordination, expedited identification of survivorship care needs, and met service priorities of providing quality care close to home (burden, perceived effectiveness). CONCLUSIONS: Findings from this study suggest virtual post-surgical care delivered via videoconferencing is highly acceptable to prostate cancer survivors in a regional setting. Future research exploring virtual program implementation at scale and long-term patient and service outcomes is warranted.

A Vanguard Approach to the Design and Delivery of Nurse-Led Survivorship Care.

OBJECTIVES: Survivorship care is an essential component of quality cancer care. Although nurses are uniquely positioned to deliver effective and efficient nurse-led survivorship care, they report that their experiences of survivorship care provision are fragmented, under-resourced, and often distressing for the patient. DATA SOURCES: Here we report the culmination of a 4-year program of research and more than a decade of nurse-led work, to improve the survivorship care experience for men with prostate cancer comprising of: (1) the evolution of a national specialist prostate cancer nursing service; (2) a nursing Delphi study to determine prostate cancer survivorship care experiences and priorities; (3) the development of the Prostate Cancer Survivorship Essentials Framework, which provides a road map for improving quality prostate cancer survivorship care across a variety of settings; and (4) the translation of the framework into nursing practice through the development of My Personal Plan, a person-centered, evidence-informed survivorship care plan. CONCLUSION: Through the leadership of a national prostate cancer specialist nursing service, the provision of a coordinated, evidence-informed person-centered survivorship care service is now achievable. This program of work has demonstrated that irrespective of the setting or mode of delivery, specialist nurses involved in the care of men with prostate cancer and their families are leading best practice through the translation of evidence into everyday clinical practice. IMPLICATIONS FOR NURSING PRACTICE: There is an urgent need to address the significant challenges that a prostate cancer diagnosis can bring, and nurses are at the forefront and lead survivorship care delivery, which includes: (1) routine distress screening and referral to tailored evidence-based psychological care; (2) the provision of person-centered care that connects to effective symptom management; (3) self-management support; and (4) signposting to additional services which extend beyond the acute care setting.

Experiences of participants in a clinical trial of a novel radioactive treatment for advanced prostate cancer: A nested, qualitative longitudinal study.

OBJECTIVES: Qualitative studies nested within clinical trials can provide insight into the treatment experience, how this evolves over time and where improved supportive care is required. The purpose of this qualitative study is to describe the lived experiences of men with advanced prostate cancer participating in the TheraP trial; a randomised trial of 177Lu-PSMA-617 compared with cabazitaxel chemotherapy. METHODS: Fifteen men with advanced prostate cancer were recruited from the TheraP clinical trial with interviews conducted at three timepoints during the trial. An interpretative phenomenological approach was used, and interviews analysed using thematic analysis. This research paper reports the results from the mid-point, conclusion and follow up interviews, focusing specifically on participants' experiences of trial participation. RESULTS: Three themes were identified representing the lived experiences of men with advanced prostate cancer participating in the TheraP trial: (1) facing limited options; (2) anticipating outcomes and (3) coping with health changes. CONCLUSIONS: Men who enrol in clinical trial of anti-neoplastic treatments for prostate cancer need targeted psychological and supportive care that includes attention to unique aspects of the experience of having prostate cancer and being in a clinical trial. As part of their trial experience, men with advanced prostate cancer need to be regularly assessed for survivorship needs, fully informed, supported and referred to services for regular care and support across the trajectory of their disease. TRIAL REGISTRATION: NCT03392428. Registered on 8 January 2018 (ANZUP1603).

Support-seeking by cancer caregivers living in rural Australia.

OBJECTIVE: Rural cancer caregivers report poor wellbeing and high unmet needs for support. This study investigates sources of support sought by cancer caregivers living in rural Australia, and factors associated with support-seeking. METHODS: Informal caregivers of people with cancer completed a questionnaire assessing sociodemographic characteristics, caregiver factors and support-seeking. Descriptive statistics, bivariate analyses and logistic regression were used to identify common sources of support and factors associated with support-seeking. Alluvial and radar plots were used to identify and describe support-seeking profiles. FINDINGS: Of 244 rural caregivers, 64% reported seeking support for themselves, 72% for the cancer patient, and 22% did not seek any support. The most common sources of support were general practitioners and online. Higher caregiver burden, higher income, caring for someone with anxiety/depression or caring for someone who has difficulty completing their usual activities were associated with seeking support from a greater number of sources. The 'No support-seekers' profile had the highest proportions of caregivers who were male, caring for someone <12 months post-diagnosis and lower income earners. CONCLUSIONS: Many rural caregivers seek support for themselves and the cancer patient, commonly from medical and online sources. IMPLICATIONS FOR PUBLIC HEALTH: Further work may be needed to reduce caregiver burden and support caregivers who are male, caring for someone recently diagnosed, and those with lower incomes.

A prognostic survival model for women diagnosed with invasive breast cancer in Queensland, Australia.

PURPOSE: Prognostic models can help inform patients on the future course of their cancer and assist the decision making of clinicians and patients in respect to management and treatment of the cancer. In contrast to previous studies considering survival following treatment, this study aimed to develop a prognostic model to quantify breast cancer-specific survival at the time of diagnosis. METHODS: A large (n = 3323), population-based prospective cohort of women were diagnosed with invasive breast cancer in Queensland, Australia between 2010 and 2013, and followed up to December 2018. Data were collected through a validated semi-structured telephone interview and a self-administered questionnaire, along with data linkage to the Queensland Cancer Register and additional extraction from medical records. Flexible parametric survival models, with multiple imputation to deal with missing data, were used. RESULTS: Key factors identified as being predictive of poorer survival included more advanced stage at diagnosis, higher tumour grade, "triple negative" breast cancers, and being symptom-detected rather than screen detected. The Harrell's C-statistic for the final predictive model was 0.84 (95% CI 0.82, 0.87), while the area under the ROC curve for 5-year mortality was 0.87. The final model explained about 36% of the variation in survival, with stage at diagnosis alone explaining 26% of the variation. CONCLUSIONS: In addition to confirming the prognostic importance of stage, grade and clinical subtype, these results highlighted the independent survival benefit of breast cancers diagnosed through screening, although lead and length time bias should be considered. Understanding what additional factors contribute to the substantial unexplained variation in survival outcomes remains an important objective.

Weight loss for overweight and obese patients with prostate cancer: a study protocol of a randomised trial comparing clinic-based versus Telehealth delivered EXercise and nutrition intervention (the TelEX trial).

INTRODUCTION: Obese men with prostate cancer have an increased risk of biochemical recurrence, metastatic disease and mortality. For those undergoing androgen deprivation therapy (ADT), substantial increases in fat mass are observed in the first year of treatment. Recently, we showed that a targeted supervised clinic-based exercise and nutrition intervention can result in a substantial reduction in fat mass with muscle mass preserved in ADT-treated patients. However, the intervention needs to be accessible to all patients and not just those who can access a supervised clinic-based programme. The purpose of this study was to evaluate the efficacy of telehealth delivered compared with supervised clinic-based delivered exercise and nutrition intervention in overweight/obese patients with prostate cancer. METHODS AND ANALYSIS: A single-blinded, two-arm parallel group, non-inferiority randomised trial will be undertaken with 104 overweight/obese men with prostate cancer (body fat percentage ≥25%) randomly allocated in a ratio of 1:1 to a telehealth-delivered, virtually supervised exercise and nutrition programme or a clinic-based, face-to-face supervised exercise and nutrition programme. Exercise will consist of supervised resistance and aerobic exercise performed three times a week plus additional self-directed aerobic exercise performed 4 days/week for the first 6 months. Thereafter, for months 7-12, the programmes will be self-managed. The primary endpoint will be fat mass. Secondary endpoints include lean mass and abdominal aortic calcification, anthropometric measures and blood pressure assessment, objective measures of physical function and physical activity levels, patient-reported outcomes and blood markers. Measurements will be undertaken at baseline, 6 months (post intervention), and at 12 months of follow-up. Data will be analysed using intention-to-treat and per protocol approaches. ETHICS AND DISSEMINATION: Ethics approval has been obtained from the Edith Cowan University Human Research Ethics Committee (ID: 2021-02157-GALVAO). Outcomes from the study will be published in academic journals and presented in scientific and consumer meetings. TRIAL REGISTRATION NUMBER: ACTRN12621001312831.

Supportive care needs and psychosocial outcomes of rural versus urban women with breast cancer.

OBJECTIVE: To identify whether supportive care needs vary according to remoteness and area-level socio-economic status and to identify the combinations of socio-demographic, area-level and health factors that are associated with poorer quality of life, psychological distress and severity of unmet supportive care needs. METHODS: Cross sectional data was collected from women with a breast cancer diagnosis (n = 2635) in Queensland, Australia, through a telephone survey including socio-demographic, health, psychosocial and supportive care needs measures. Hierarchical regression and cluster analyses were applied to assess the predictors of unmet need and psychosocial outcomes and to identify socio-demographic and health status profiles of women, comparing their level of unmet needs and psychosocial outcomes. RESULTS: Women living in outer regional areas reported the highest severity of unmet need in the patient care domain. Greater unmet need for health systems and information and patient care was also evident for those in moderately and most disadvantaged areas. Three clusters were identified reflecting (1) older women with poorer health and lower education (19%); (2) younger educated women with better health and private insurance (61%); and (3) physically active women with localised cancer who had completed treatment (20%). Poorer outcomes were evident in the first two of these clusters. CONCLUSIONS: This better understanding of the combinations of characteristics associated with poorer psychosocial outcomes and higher unmet need can be used to identify women with higher supportive care needs early and to target interventions.

Identifying modifiable features of home bowel cancer screening kits to facilitate use: consumer perspectives.

OBJECTIVES: Despite the widely publicised health benefits of participation in bowel cancer screening, only 43.5% of recipients participate in the Australian National Bowel Cancer Screening Program (NBCSP). Through consultation with kit recipients, this study aimed to identify features of home bowel screening kits that could be modified to increase their use. METHOD: Participants (n = 25) were presented with nine different bowel cancer screening kits and asked to identify features of each kit that might prevent or promote their use. Responses were coded using content analysis, and a narrative synthesis is presented summarising preferences relating to each element of the kit. RESULTS: Six modifiable elements were identified: collection tool, collection sheet, specimen container, instruction, packaging and processes. Participant preferences were for collection devices that limited the users' proximity to faecal matter, smaller packaging, simpler processes and step-by-step pictorial instructions. Responses regarding aesthetics, the amount of information included and receiving immediate results were mixed. CONCLUSIONS: Findings provide several consumer-driven recommendations, which are to be tested in future research aimed at improving the acceptability and usability of kits distributed in population bowel cancer screening programs.

The quality of life of regional and remote cancer caregivers in Australia.

OBJECTIVE: This study compares the well-being of rural caregivers with that of the general population and explores the potential drivers of poorer outcomes. METHOD: Patient-caregiver dyads (n = 241) residing in regional or remote Queensland, Australia, reported on QoL, chronic illness, caregiver burden, depression, anxiety and stress. Caregiver outcomes were compared with population norms and patient outcomes. Multiple regressions were conducted to identify factors associated with poorer caregiver outcomes. RESULTS: Caregivers reported lower mental health-related QoL (M = 0.436, 95% CI = 0.410-0.462) in comparison with age-matched population norms (M = 0.556, 95% CI = 0.532-0.580). No differences existed between caregiver and population norms for anxiety, stress and depression. Caregiver chronic illness and higher burden were associated with poorer mental and physical QoL, depression, anxiety and stress (η2 s ranging from 0.03 to 0.30). These associations were slightly stronger for male caregivers when compared with female caregivers (η2 s ranging from 0.03 to 0.08). CONCLUSION: It is vital that efforts are made to improve rural caregivers' mental and emotional well-being. Interventions that support caregivers with chronic conditions reduce caregiver burden and take into consideration the unique experience of male caregivers will go some way to addressing this. Future research is needed to identify other drivers of health outcomes in this group.

Exploring predictors of and barriers to online prostate cancer community use: A cross-sectional survey of users and non-users.

OBJECTIVE: Prostate cancer survivors are increasingly turning to online communities for support. This study explored predictors of and barriers to use. METHODS: A prospective survey of 141 Australian prostate cancer survivors assessed sociodemographic, clinical, psychosocial, and attitudinal characteristics associated with intention to use, and subsequent use of online communities. RESULTS: The sample was divided into current, past, and non-user groups. Current users reported more intent to use online communities and had higher levels of social support. Current and past users, and their close contacts, held a more positive attitude towards use. Non-users experienced more barriers to use, fewer life impacts due to health changes, and were more likely to live in rural or remote regions. According to current users online prostate cancer communities are too informal, to past users they are too time intensive, and non-users believe they are too shallow. The most critical barriers to use were finding a suitable community, time to use them, and being capable of talking about or articulating their illness on the Internet. While these forums allow men to share experiences, gain recognition and understanding, and receive information, they may lead men to becoming too preoccupied with their illness and feeling more concerned about the consequences of their disease. CONCLUSION: Improving attitudes towards online communities and reducing barriers to use may help better encourage men with unmet supportive care needs to seek help from these groups. Future research exploring supporter attitudes towards use and explicating how men are supported online is needed.

Exercise intervention and sexual function in advanced prostate cancer: a randomised controlled trial.

OBJECTIVES: Treatments for prostate cancer such as androgen deprivation therapy (ADT), surgery and radiation therapy can adversely affect sexual, urinary and bowel function. Preliminary research has demonstrated the efficacy of exercise to preserve sexual function in men with localised prostate cancer receiving ADT, though this has yet to be investigated in a metastatic setting. We examined the effects of a 12-week exercise programme comprising resistance, aerobic and flexibility training on sexual health and function in men with advanced prostate cancer. METHODS: Patients with prostate cancer (70.0±8.4 year; body mass index 28.7±4.0 kg/m2) with bone metastases (rib/thoracic spine, 66.7%; lumbar spine, 43.9%; pelvis, 75.4%; femur, 40.4%; humerus, 24.6%; other sites, 70.2%) were randomly assigned to supervised exercise 3 days/week (n=28) or usual care (n=29). Sexual health and function were assessed using the International Index of Erectile Function, the Expanded Prostate Cancer Index Composite and the EORTC-PR25 at baseline and 12 weeks. RESULTS: Patients attended 89% of planned sessions and there were no adverse events. After adjusting for baseline values, there was no significant difference between groups for any measure of sexual function and activity (p>0.05). Additionally, there was no significant difference between groups for urinary and bowel function assessed by the EORTC-PR25 (p>0.05). CONCLUSIONS: A short-term programme of supervised exercise does not appear to enhance indices of sexual health and function in men with advanced prostate cancer. Limitations of the intervention included the conservative modular exercise programme, which deliberately avoided loading bone metastatic sites. TRIAL REGISTRATION NUMBER: ACTRN12611001158954.

Experiences of female partners of prostate cancer survivors: A systematic review and thematic synthesis.

The purpose of this systematic review and synthesis of studies reporting qualitative data was to understand the gendered experiences of female partners of prostate cancer survivors to inform psychosocial support for women. We searched Medline, PsycINFO, EMBASE, AMED, CINAHL, Cochrane Database of Systematic Reviews, and Sociological Abstracts for articles on 15 and 16 April 2019, and again on 30 November 2020. English language articles published in peer-reviewed journals were included if they reported solely on findings describing the perspectives of the female partners. Extracted data were analysed using line-by-line coding, organisation of codes into descriptive themes, and development of analytical themes. A theoretical framework was then selected to organise the relationships between issues that were found to be central to the experiences of female partners. Of 4839 articles screened, 14 met inclusion criteria, reporting 13 studies with a total sample of 359 female partners. Ussher and Sandoval's theory to describe the gendered positionings of cancer caregivers accommodated the thematic findings. The overarching theme reflected the substantive psychosocial impact of prostate cancer on female partners. Women's experiences were influenced by self-positioning (as part of a couple; provider of support to their male partner; resilient; and guided by faith and spirituality), being positioned by their partners' response (manager of male partner's psychological distress or strengthened by male partner's positive response) and by their broader contexts (family members and social networks; clinicians and the health system; and cultural values and customs). Findings highlight the need to avoid reductionist approaches to gender. Greater consideration of 'contextualised femininities', or conceptualising the influence of gender roles, relations, and identities within the wider life course contexts of female partners is required in the design and delivery of psychosocial support services.

Information needs and preferences among rural cancer survivors in Queensland, Australia: a qualitative examination.

OBJECTIVE: This study aimed to understand how cancer survivors in rural Queensland seek and receive information, as well as their preferences regarding the content and delivery of health-related information. METHODS: This study explored cancer survivors' experiences in seeking and comprehending health information using a qualitative descriptive approach. Semi-structured interviews were conducted with 24 participants. Data were analysed using reflexive thematic analysis. RESULTS: Two major themes and six sub-themes were identified including 1) information content and gaps - a) information about diagnosis and treatment, b) survivorship information gaps and c) practical support needs and 2) delivery and acceptance of information - a) sources of information, b) personalised information needs and c) information seeking or avoidance. Findings suggested that health information provision was inconsistent; survivors' attitudes towards seeking information varied greatly; and survivors' had difficulty processing information due to emotional distress. CONCLUSION: The role of the health professional is critical in providing information and support to rural cancer survivors. Information provided should be tailored to meet the needs and preferences of individuals taking into consideration demographic factors and attitudes. Implications for public health: The current findings imply that quality information provision after cancer treatment would facilitate improvements in satisfaction among rural cancer survivors.

Advanced prostate cancer experimental radioactive treatment-clinical trial decision making: patient experiences.

OBJECTIVES: Nested qualitative studies within clinical trials provide the opportunity to better understand participant experiences of participation and identify areas where improved support is required. The purpose of this qualitative study is to describe the lived experiences of men with advanced prostate cancer participating in the TheraP trial; a randomised trial of 177Lu-PSMA-617 compared with cabazitaxel chemotherapy. METHODS: Fifteen men with advanced prostate cancer were recruited from the TheraP clinical trial and interviewed at three time points during the trial. Interviews were inductively analysed using thematic analysis. This research paper reports the results from the baseline interview at commencement of the trial, focusing specifically on participants' enrolment experiences. RESULTS: Four themes were identified representing the lived experiences of men with advanced prostate cancer deciding to participate in the TheraP trial: (1) hoping to survive; (2) needing to feel informed; (3) choosing to participate and (4) being randomised. The process of deciding to enrol in a clinical trial is filled with indecision, emotional difficulties and focused on a desire to live. CONCLUSIONS: For men with advanced prostate cancer, the experience of deciding to enrol in a clinical trial is principally driven by a desire to survive but interlinked with the need to make an informed decision as participants in this study expressed a preference for allocation to the experimental arm. Men seeking to enrol in clinical trials of new prostate cancer treatments would benefit from improved informational and decision support. TRIAL REGISTRATION NUMBER: NCT03392428, ANZUP1603.

The Supportive Care Needs of Regional and Remote Cancer Caregivers.

OBJECTIVE: As cancer survival rates continue to increase, so will the demand for care from family and friends, particularly in more isolated settings. This study aims to examine the needs of cancer caregivers in regional and remote Australia. METHODS: A total of 239 informal (i.e., non-professional) cancer caregivers (e.g., family/friends) from regional and remote Queensland, Australia, completed the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C). The frequencies of individuals reporting specific needs were calculated. Logistic regression analyses assessed the association between unmet needs and demographic characteristics and cancer type. RESULTS: The most frequently endorsed needs were lodging near hospital (77%), information about the disease (74%), and tests and treatment (74%). The most frequent unmet needs were treatment near home (37%), help with economic burden (32%), and concerns about the person being cared for (32%). Younger and female caregivers were significantly more likely to report unmet needs overall (OR = 2.12; OR = 0.58), and unmet healthcare staff needs (OR = 0.35; OR = 1.99, respectively). Unmet family and social support needs were also significantly more likely among younger caregivers (OR = 0.35). Caregivers of breast cancer patients (OR = 0.43) and older caregivers (OR = 0.53) were significantly less likely to report unmet health and psychology needs. Proportions of participants reporting needs were largely similar across demographic groups and cancer type with some exceptions. CONCLUSIONS: Caregiver health, practical issues associated with travel, and emotional strain are all areas where regional and remote caregivers require more support. Caregivers' age and gender, time since diagnosis and patient cancer type should be considered when determining the most appropriate supportive care.