Data sharing in cancer research: A qualitative study exploring community members' preferences.

BACKGROUND: Advancements in cancer treatment and survivorship rely on participation in research and access to health records. METHODS: This study explored preferences for data access and sharing in 14 workshops with 42 community members, most of whom were a cancer survivor or carer. Various scenarios for data access and sharing were presented and discussed, with participants' preferences summarized using descriptive statistics. Reasons underlying these preferences were identified through a thematic analysis of workshop transcripts. RESULTS: Most participants indicated a willingness for researchers to use their self-report data and current health records for a specific research project (86%). Many were also willing for their self-report data and current (62%) or all future (44%) health records to be shared with other researchers for use in other studies if made aware of this. Willingness to consent to data access and sharing data in cancer research was influenced by: (i) the potential for data sharing to advance medical discoveries and benefit people impacted by cancer in the future, (ii) transparency around researchers' credibility and their intentions for data sharing, (iii) level of ownership and control over data sharing, and (iv) protocols for privacy and confidentiality in data sharing. CONCLUSIONS: Based on these themes, we present practical strategies for optimizing data access and sharing in cancer research.

What are the mechanisms underlying the delivery of survivorship care information in Australia? A realist review.

OBJECTIVE: Quality survivorship information is an essential component of cancer care. However, survivors often report not receiving this information and healthcare professionals report limited practical guidance on how to effectively deliver survivorship information. Therefore, this study used realist review methods to identify mechanisms reported within the published literature for communicating survivorship information and to understand the contextual factors that make these mechanisms effective. METHODS: Full-text papers published in CINAHL, PubMed, Web of Science, Scopus, Cochrane Library, and Academic Search Ultimate were included. Studies included in this review were conducted in Australia between January 2006 and December 2023, and reported on how information regarding survivorship care was communicated to adult cancer survivors living in the community. This review utilized realist methodologies: text extracts were converted to if-then statements used to generate context-mechanism-outcome theories. RESULTS: Fifty-one studies were included and six theories for mechanisms that underpin the effective delivery of survivorship information were formed. These include: (1) tailoring information based on the survivors' background, (2) enhancing communication among providers, (3) employing dedicated survivorship staff, (4) providing survivorship training, (5) reducing the burden on survivors to navigate their care, and (6) using multiple modalities to provide information. CONCLUSIONS: Findings can inform practical guidance for how survivorship care information is best delivered in practice. Clinicians can apply this guidance to improve their individual interactions with cancer survivors, as can policymakers to develop healthcare systems and procedures that support effective communication of cancer survivorship information.

What are the post-treatment information needs of rural cancer survivors in Australia? A systematic literature review.

OBJECTIVE: To conduct a systematic literature review to critically assess the met and unmet post-treatment information needs of cancer survivors living in rural communities in Australia, to inform the improvement of survivors' transition from treatment in major cities to community care. METHODS: Cumulative index of nursing and allied health literature, PubMed, Web of Science, Scopus, Cochrane CENTRAL and Academic Search Ultimate databases and websites of 118 cancer organisations were searched for relevant Australian studies published since 2006. Key search terms included 'rural', 'remote', 'regional', 'cancer', 'survivor*', 'living with', and 'post-treatment'. Data reflecting study source, aims, methodology, and reported information needs were extracted and summarised. Study quality was assessed using Joanna Briggs Institute tools. RESULTS: Fifty-two articles met eligibility criteria. Only six of these specified a primary aim of understanding information needs for rural cancer survivors. Information on prognosis and recovery; managing treatment side effects; healthy lifestyle choices; referrals to support services, and face-to-face and written delivery of information at multiple time points were reported as needed and often lacking for rural cancer survivors. CONCLUSIONS: Co-ordinated, multi-step provision of information to support health and recovery after cancer treatment and beyond is likely to be particularly important for rural cancer survivors given their broad range of needs and reduced access to health care services. Findings provide useful recommendations to facilitate patients' transition home to rural communities after cancer treatment in major cities, however, an increased understanding of the information needs of rural survivors is required to inform the development of guidelines that can be used in clinical practice.

Cancer-related help-seeking in cancer survivors living in regional and remote Australia.

OBJECTIVES: To measure rates of detection via screening, perceived self-imposed delays in seeking medical attention, and support seeking in a sample of regional and remote people with a cancer diagnosis and to test whether an association exists between these behaviours and minimising problems and resignation, a need for self-control and reliance and fatalism. Correlations and binary logistic regressions were conducted to test the associations between demographic characteristics, attitudes and behaviours. RESULTS: Females were more likely to have had their cancer detected via screening (OR = 10.02, CI = 3.49-28.78). Younger participants (r = -0.103, p = 0.009) were slightly more likely to seek at least one form of support and online support was sought more often by younger patients (r = -0.269, p < 0.001), females (r = 0.152, p < 0.001), those from higher socio-economic (SES) areas (r = 0.100, p = 0.012), and those with higher education levels (r = 0.247, p < 0.001). Younger (r = -0.161, p < 0.001), and female (r = 0.82, p = 0.013), participants were also slightly more likely to seek support specifically through cancer support groups. No significant relationships between minimising problems and resignation, needs for control and self-reliance or fatalism and detection via screening, support seeking, or perceived self-imposed delays to seeking medical attention were apparent, with the exception that those with higher fatalism (predetermined health) were slightly less likely to report seeking support or information online (OR = 0.79, CI = 0.65-0.95) and slightly more likely to report using Cancer Council's support services (OR = 1.24, CI = 1.02-1.52). CONCLUSIONS: Strategies to improve the accessibility and appropriateness of support available for regional and remote cancer patients should consider interventions that remove barriers to access associated with age, gender, and education as opposed to those which address the attitudinal traits measured here.

Are National Cancer Control Indicators for patient experiences being met in regional and remote Australia? A cross-sectional study of cancer survivors who travelled for treatment.

OBJECTIVE: To examine the health services experience of patients with cancer from regional and remote Australia using the Australian National Cancer Control Indicators (NCCI) guidelines as an assessment framework. DESIGN: Cross-sectional. SETTING: Queensland non-for-profit cancer accommodation lodges. PARTICIPANTS: Participants were patients with cancer who travelled for treatment from rural and remote Queensland to major urban centres (n=518; age mean=64.6, SD=11.18). OUTCOME MEASURES: Assessments included NCCI patient indicators, quality of life (QoL), psychological distress and unmet supportive care needs. RESULTS: The frequency at which NCCI indicators were met ranged from 37.5% for receiving an assessment and care plan to 97.3% for understanding explanations about diagnosis. Geographical considerations did not impact patient experience, whereas middle school educated participants were more likely than those with senior-level education or higher to receive an assessment and care plan (OR=1.90, 95% CI 1.23 to 2.91) and to report having their views on treatment taken into account (OR=2.22, 95% CI 1.49 to 3.33). Patients with breast or prostate cancer reported better communication and patient involvement and information and services provision (r=p<0.001) compared with those with skin and head and neck cancer. When compared with information and service provision, communication and patient involvement showed stronger positive associations with QoL (z=2.03, p=0.042), psychosocial (z=2.05, p=0.040) and patient care (z=2.00, p=0.046) outcomes. CONCLUSION: The patient care experience varies across the NCCI indicators by sociodemographic and clinical factors that likely reflect healthcare system biases. Perceptions about communication and involvement appear most critical for optimal outcomes and should be a priority action area for cancer control.

A prospective study of psychological distress after prostate cancer surgery.

BACKGROUND: Men treated for prostate cancer experience heightened psychological distress and have an increased risk of suicide. Management of this distress and risk is crucial for quality urological care. OBJECTIVE: To identify risk indicators for poorer trajectories of psychological adjustment and health-related quality of life (QoL) after surgery for localised prostate cancer. DESIGN, SETTING, AND PARTICIPANTS: Patients were newly diagnosed with localised prostate cancer scheduled for surgical treatment. Patients were assessed at baseline (pre-surgery) and 6 weeks, 3 months, 6 months, 12 months, and 24 months post-surgery. MEASUREMENTS: Assessment measures included sociodemographics, domain-specific and health-related QoL, and psychological distress. Mixed effects regression models were used to analyse the data. RESULTS AND LIMITATIONS: A total of 233 patients provided data for this analysis (Mage = 60 years, standard deviation [SD] = 4.02; MPSA = 7.37 ng/mL). At baseline, the prevalence of high psychological distress was 28% reducing to 21% at 24 months. Before treatment, younger age, more comorbidities, and worse bowel function were related to greater psychological distress; and younger age and better urinary, sexual, and bowel function were related to better health-related QoL. By contrast, for changes over time, only bowel function was important with better bowel function predicting decreasing psychological distress for men. CONCLUSIONS: Regular distress screening is indicated over the 24 months after surgery for localised prostate cancer. Care pathways for men with prostate cancer need also to respond to age-specific concerns and health problems associated with comorbidities in aging men. Focussed symptom control for bowel bother should be a priority.

Five-year outcomes from a randomised controlled trial of a couples-based intervention for men with localised prostate cancer.

OBJECTIVE: Psychosexual morbidity is common after prostate cancer treatment, however, long-term prospective research is limited. We report 5-year outcomes from a couples-based intervention in dyads with men treated for localised prostate cancer with surgery. METHODS: A randomised controlled trial was conducted involving 189 heterosexual couples, where the man received a radical prostatectomy for prostate cancer. The trial groups were peer support vs. nurse counselling versus usual care. Primary outcomes were sexual adjustment, unmet sexual supportive care needs, masculine self-esteem, marital satisfaction, and utilisation of erectile aids at 2-, 3-, 4- and 5-year follow-up. RESULTS: The effects of the interventions varied across the primary outcomes. Partners in the peer group had higher sexual adjustment than those in the usual care and nurses group at 2 and 3 years (P = 0.002-0.035). Men in usual care had lower unmet sexual supportive care needs than men in the peer and nurse groups (P = 0.001; P = 0.01) at 3 years. Women in usual care had lower sexual supportive care needs than women in the peer group at 2 and 3 years (P = 0.038; P = 0.001). Men in the peer and nurse group utilised sexual aids more than men in usual care; at 5 years 54% of usual care men versus 87% of men in peer support and 80% of men in the nurse group. CONCLUSION: Peer and nurse-administered psychosexual interventions have potential for increasing men's adherence to treatments for erectile dysfunction. Optimal effects may be achieved through an integrated approach applying these modes of support.

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.

Health literacy and the health status of men with prostate cancer.

OBJECTIVE: To test the Health Literacy Questionnaire (HLQ) in a sample of men with prostate cancer and examine the components of health literacy that are most strongly associated with mental and physical health-related quality of life in men with prostate cancer. METHOD: Members (N = 565) of a state-wide prostate cancer support network in Queensland, Australia (Mage  = 71.14, SD = 8.68) completed the HLQ along with the Medical Outcomes Study, 36-item short-form health survey (SF-36). Confirmatory factor analysis was employed to assess the internal structure of the HLQ. The effects (bs) of each of the nine health literacy factors on mental and physical health status were graphed and compared using Fishers exact test for comparing parameter estimates. RESULTS: Fit indices including RMSEA (0.069, CI = 0.066-0.072), CFI (.853), and TLI (.839), alongside item loadings and internal consistency (Cronbach alphas >0.80) for the nine-factor model, supported the robustness of the HLQ for use in this prostate cancer sample. Health literacy factors reflecting social and health provider support, navigating health systems, finding and understanding health information, and active engagement with providers shared small to moderate associations with mental health status and little to no association with physical health status. CONCLUSION: Findings provide support for the use of the HLQ as a valid and reliable measure of health literacy in men with prostate cancer. Although further research is required to establish causality, interventions that aim to improve skills in connecting and effectively communicating with health care services and providers might lead to better mental health related quality of life for men with prostate cancer.

Robot-assisted laparoscopic prostatectomy versus open radical retropubic prostatectomy: 24-month outcomes from a randomised controlled study.

BACKGROUND: Previous trials have found similar early outcomes after robot-assisted laparoscopic prostatectomy and open radical retropubic prostatectomy. We report functional and oncological postoperative outcomes up to 24 months after surgery for these two surgical techniques. METHODS: In this randomised controlled phase 3 study, men who had newly diagnosed clinically localised prostate cancer and who had chosen surgery as their treatment approach, and were aged between 35 years and 70 years were eligible and recruited from the Royal Brisbane and Women's Hospital (Brisbane, QLD, Australia). Participants were randomly assigned (1:1) to have either robot-assisted laparoscopic prostatectomy or open radical retropubic prostatectomy. Randomisation was computer generated and occurred in blocks of ten. This was an open trial; however, study investigators involved in data analysis were masked to each patient's surgical treatment. Primary outcomes were urinary function (urinary domain of Expanded Prostate Cancer Index Composite [EPIC]) and sexual function (sexual domain of EPIC and International Index of Erectile Function Questionnaire [IIEF]) at 6 months, 12 months, and 24 months and oncological outcome (biochemical recurrence and imaging evidence of progression). The trial was powered to assess health-related and domain-specific quality-of-life outcomes over 24 months. All analyses were done on a per-protocol basis. The trial was registered with the Australian New Zealand Clinical Trials Registry, number ACTRN12611000661976. FINDINGS: Between Aug 23, 2010, and Nov 25, 2014, 326 men were enrolled, of whom 163 were randomly assigned to robot-assisted laparoscopic prostatectomy and 163 to open radical retropubic prostatectomy. 18 withdrew (12 assigned to radical retropubic prostatectomy and six assigned to robot-assisted laparoscopic prostatectomy); thus, 151 in the radical retropubic prostatectomy group and 157 in the robot-assisted laparoscopic prostatectomy group proceeded to surgery. At the 24-month follow-up time point, 150 men remained in the robot-assisted laparoscopic prostatectomy group and 146 remained in the open radical retropubic prostatectomy group. Urinary function scores did not differ significantly between robot-assisted laparoscopic prostatectomy and open radical retropubic prostatectomy at 6 months post-surgery (88·68 [95% CI 86·79-90·58] vs 88·45 [86·54-90·36]; p1<0·0001, p2<0·0001), 12 months post-surgery (90·76 [88·89-92·62] vs 91·53 [90·07-92·98]; p1<0·0001, p2<0·0001), or 24 months post-surgery (91·33 [89·64-93·03] vs 90·86 [89·01-92·70]; p1<0·0001, p2<0·0001). Sexual function scores were not significantly different between robot-assisted laparoscopic prostatectomy and open radical retropubic prostatectomy at 6 months post-surgery (EPIC: 37·40 [33·60-41·19] vs 38·63 [34·76-42·49], p1=0·0001, p2<0·0001; IIEF: 29·75 [26·66-32·84] vs 29·78 [26·41-33·16], p1<0·0001, p2<0·0001), 12 months post-surgery (EPIC: 42·28 [38·05-46·51] vs 42·51 [38·29-46·72], p1<0·0001, p2<0·0001; IIEF: 33·10 [29·59-36·61] vs 33·50 [29·87-37·13], p1=0·0002, p2<0·0001), or 24 months post-surgery (EPIC: 45·70 [41·17-50·23] vs 46·90 [42·20-51·60], p1=0·0003, p2<0·0001; IIEF: 33·95 [30·11-37·78] vs 33·89 [29·82-37·96], p1=0·0003, p2=0·0004). Equivalence testing on the difference between the proportion of biochemical recurrences between the two groups (13 [9%] in the open radical retropubic prostatectomy group vs four [3%] in the robot-assisted laparoscopic prostatectomy group) showed that equality between the two techniques could not be established based on a 90% CI with a prespecified margin of 10%. However, a superiority test showed that the two proportions were significantly different (p=0·0199). Equivalence testing on the proportion of patients who had imaging evidence of progression revealed that the two groups were not significantly different (p=0·2956). INTERPRETATION: Robot-assisted laparoscopic prostatectomy and open radical retropubic prostatectomy yielded similar functional outcomes at 24 months. We advise caution in interpreting the oncological outcomes of our study because of the absence of standardisation in postoperative management between the two trial groups and the use of additional cancer treatments. Clinicians and patients should view the benefits of a robotic approach as being largely related to its minimally invasive nature. FUNDING: Cancer Council Queensland.

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.

Health-Related Quality of Life After the Diagnosis of Locally Advanced or Advanced Prostate Cancer: A Longitudinal Study.

BACKGROUND: Approximately 20% of men with a diagnosis of prostate cancer present with locally advanced or advanced disease. Few studies consider longer-term impact of disease progression and treatment adverse effects on health-related quality of life (QoL) of these men. OBJECTIVE: Describe changes in health-related QoL over 5 years for men with newly diagnosed locally advanced or advanced prostate cancer. INTERVENTIONS/METHODS: Eighty-one men with locally advanced or advanced prostate cancer referred to the study by their treating urologist completed a self-administered questionnaire assessing distress, cancer-specific distress, decision regret, satisfaction with life, and global and disease-specific health-related QoL. Questionnaires were administered close to diagnosis (baseline), 2, 6, 12, 24, 36, 48, and 60 months' follow-up. RESULTS: Men were of mean age 68.3 (SD, 7.9) years and at mean of 31.9 (SD, 50.5) days postdiagnosis. The most common treatment received was androgen deprivation therapy (95.1%) or radiation therapy (79%). The proportion of men classified as distressed (Distress Thermometer) ranged from 46.3% (baseline) to 32.6% (60 months). Decrements in physical QoL were found at 2, 6, 12, 24, 36, and 48 months compared with baseline. Life satisfaction ratings were lower at 6 months compared with baseline. Sexual concerns were consistently high across the 5 years (Expanded Prostate Cancer Index Composite <30). CONCLUSIONS: In the context of advanced disease, results indicate that health-related QoL fluctuates from diagnosis to 5 years later. A substantial proportion remained distressed at 5-year follow-up. IMPLICATIONS FOR PRACTICE: Care frameworks supporting ongoing assessment of health-related QoL concerns of men with advanced prostate cancer are needed with a particular focus on sexual adjustment.

Robot-assisted laparoscopic prostatectomy versus open radical retropubic prostatectomy: early outcomes from a randomised controlled phase 3 study.

BACKGROUND: The absence of trial data comparing robot-assisted laparoscopic prostatectomy and open radical retropubic prostatectomy is a crucial knowledge gap in uro-oncology. We aimed to compare these two approaches in terms of functional and oncological outcomes and report the early postoperative outcomes at 12 weeks. METHOD: In this randomised controlled phase 3 study, men who had newly diagnosed clinically localised prostate cancer and who had chosen surgery as their treatment approach, were able to read and speak English, had no previous history of head injury, dementia, or psychiatric illness or no other concurrent cancer, had an estimated life expectancy of 10 years or more, and were aged between 35 years and 70 years were eligible and recruited from the Royal Brisbane and Women's Hospital (Brisbane, QLD). Participants were randomly assigned (1:1) to receive either robot-assisted laparoscopic prostatectomy or radical retropubic prostatectomy. Randomisation was computer generated and occurred in blocks of ten. This was an open trial; however, study investigators involved in data analysis were masked to each patient's condition. Further, a masked central pathologist reviewed the biopsy and radical prostatectomy specimens. Primary outcomes were urinary function (urinary domain of EPIC) and sexual function (sexual domain of EPIC and IIEF) at 6 weeks, 12 weeks, and 24 months and oncological outcome (positive surgical margin status and biochemical and imaging evidence of progression at 24 months). The trial was powered to assess health-related and domain-specific quality of life outcomes over 24 months. We report here the early outcomes at 6 weeks and 12 weeks. The per-protocol populations were included in the primary and safety analyses. This trial was registered with the Australian New Zealand Clinical Trials Registry (ANZCTR), number ACTRN12611000661976. FINDINGS: Between Aug 23, 2010, and Nov 25, 2014, 326 men were enrolled, of whom 163 were randomly assigned to radical retropubic prostatectomy and 163 to robot-assisted laparoscopic prostatectomy. 18 withdrew (12 assigned to radical retropubic prostatectomy and six assigned to robot-assisted laparoscopic prostatectomy); thus, 151 in the radical retropubic prostatectomy group proceeded to surgery and 157 in the robot-assisted laparoscopic prostatectomy group. 121 assigned to radical retropubic prostatectomy completed the 12 week questionnaire versus 131 assigned to robot-assisted laparoscopic prostatectomy. Urinary function scores did not differ significantly between the radical retropubic prostatectomy group and robot-assisted laparoscopic prostatectomy group at 6 weeks post-surgery (74·50 vs 71·10; p=0·09) or 12 weeks post-surgery (83·80 vs 82·50; p=0·48). Sexual function scores did not differ significantly between the radical retropubic prostatectomy group and robot-assisted laparoscopic prostatectomy group at 6 weeks post-surgery (30·70 vs 32·70; p=0·45) or 12 weeks post-surgery (35·00 vs 38·90; p=0·18). Equivalence testing on the difference between the proportion of positive surgical margins between the two groups (15 [10%] in the radical retropubic prostatectomy group vs 23 [15%] in the robot-assisted laparoscopic prostatectomy group) showed that equality between the two techniques could not be established based on a 90% CI with a Δ of 10%. However, a superiority test showed that the two proportions were not significantly different (p=0·21). 14 patients (9%) in the radical retropubic prostatectomy group versus six (4%) in the robot-assisted laparoscopic prostatectomy group had postoperative complications (p=0·052). 12 (8%) men receiving radical retropubic prostatectomy and three (2%) men receiving robot-assisted laparoscopic prostatectomy experienced intraoperative adverse events. INTERPRETATION: These two techniques yield similar functional outcomes at 12 weeks. Longer term follow-up is needed. In the interim, we encourage patients to choose an experienced surgeon they trust and with whom they have rapport, rather than a specific surgical approach. FUNDING: Cancer Council Queensland.

Medical Help-Seeking for Sexual Concerns in Prostate Cancer Survivors.

INTRODUCTION: Although sexual dysfunction is common after prostate cancer, men's decisions to seek help for sexual concerns are not well understood. AIM: Describe predictors of actual prior help-seeking and intended future medical help-seeking for sexual dysfunction in prostate cancer survivors. METHODS: A cross-sectional survey of 510 prostate cancer survivors assessed masculine beliefs, attitudes, support/approval from partner/peer networks (subjective norm), and perceived control as predictors of medical help-seeking for sexual concerns. A theory of planned behavior (TPB) perspective was used to examine actual prior and planned future behavior and contributing factors. Statistical analyses included multiple and logistic regressions. MAIN OUTCOME MEASURES: Intention to see a doctor for sexual advice or help in the next 6 months was measured using the intention subscale adapted from the Attitudes to Seeking Help after Cancer Scale. Prior help-seeking was measured with a dichotomous yes/no scale created for the study. RESULTS: Men were Mage 71.69 years (SD = 7.71); 7.54 years (SD = 4.68) post-diagnosis; received treatment(s) (58.1% radical prostatectomy; 47.1% radiation therapy; 29.4% hormonal ablation); 81.4% reported severe ED (IIED 0-6) and 18.6% moderate-mild ED (IIED 7-24). Overall, 30% had sought sexual help in the past 6 months, and 24% intended to seek help in the following 6 months. Prior help-seeking was less frequent among men with severe ED. Sexual help-seeking intentions were associated with lower education, prior sexual help-seeking, sexual importance/ priority, emotional self-reliance, positive attitude, and subjective norm (R(2) = 0.56). CONCLUSION: The TPB has utility as a theoretical framework to understand prostate cancer survivors' sexual help-seeking decisions and may inform development of more effective interventions. Masculine beliefs were highly salient. Men who were more emotionally self-reliant and attributed greater importance to sex formed stronger help-seeking intentions. Subjective norm contributed most strongly to help-seeking intentions suggesting that health professionals/partners/peers have a key role as support mechanisms and components of psycho-sexual interventions.

Defining young in the context of prostate cancer.

The experience of prostate cancer is for most men a major life stress with the psychological burden of this disease falling more heavily on those who are younger. Despite this, being young as it applies to prostate cancer is not yet clearly defined with varied chronological approaches applied. However, men's responses to health crises are closely bound to life course and masculinities from which social roles emerge. This paper applied qualitative methodology (structured focus groups and semistructured interviews with expert informants) using interpretative phenomenological analysis to define what it means to be young and have prostate cancer. Structured focus groups were held with 26 consumer advisors (men diagnosed with prostate cancer who provide support to other men with prostate cancer or raise community awareness) and health professionals. As well, 15 men diagnosed with prostate cancer and in their 40s, 50s, or 60s participated in semi-structured interviews. Participants discussed the attributes that describe a young man with prostate cancer and the experience of being young and diagnosed with prostate cancer. Chronological definitions of a young man were absent or inconsistent. Masculine constructions of what it means to be a young man and life course characteristics appear more relevant to defining young as it applies to prostate cancer compared with chronological age. These findings have implications for better understanding the morbidities associated with this illness, and in designing interventions that are oriented to life course and helping young men reconstruct their identities after prostate cancer.

A randomised controlled trial of a couples-based sexuality intervention for men with localised prostate cancer and their female partners.

OBJECTIVE: The diagnosis and treatment of prostate cancer is followed by substantive sexual morbidity. The optimal approach for intervening remains unclear. METHODS/DESIGN: A three-arm randomised control trial was undertaken with 189 heterosexual couples where the man had been diagnosed with prostate cancer and treated surgically. The efficacy of peer-delivered telephone support versus nurse-delivered telephone counselling versus usual care in improving both men's and women's sexual adjustment was investigated. Assessments were undertaken at baseline (pre-test) with follow-up at 3, 6 and 12 months. RESULTS: At 12 months, men in the peer (p = 0.016) and nurse intervention (p = 0.008) were more likely to use medical treatments for erectile dysfunction (ED) than men in the usual care arm. Men in the nurse intervention more frequently used oral medication for ED than men in usual care (p = 0.002). No significant effects were found for sexual function, sexuality needs, sexual self-confidence, masculine self-esteem, marital satisfaction or intimacy. CONCLUSION: Although peer and nurse couples-based interventions can increase use of medical treatments for ED, this may not translate into better sexual or relationship outcomes. More research is needed into the optimal timing of interventions to improve sexual outcomes for men with prostate cancer and to identify the subpopulations that will benefit from them.

The validity of the distress thermometer in prostate cancer populations.

BACKGROUND: The Distress Thermometer (DT) is widely recommended for screening for distress after cancer. However, the validity of the DT in men with prostate cancer and over differing time points from diagnosis has not been well examined. METHOD: Receiver operating characteristics analyses were used to evaluate the diagnostic accuracy of the DT compared with three commonly used standardised scales in two prospective and one cross-sectional survey of men with prostate cancer (n = 740, 189 and 463, respectively). Comparison scales included the Impact of Event Scale - Revised (IES-R, Study 1), the Hospital Anxiety and Depression Scale (HADS, Study 2) and the Brief Symptom Inventory-18 (BSI-18, Study 3). RESULTS: Study 1: the DT showed good accuracy against the IES-R at all time points (area under curves (AUCs) ranging from 0.84 to 0.88) and sensitivity was high (>85%). Study 2: the DT performed well against both the anxiety and depression subscales for HADS at baseline (AUC = 0.84 and 0.82, respectively), but sensitivity decreased substantially after 12 months. Study 3: validity was high for the anxiety (AUC = 0.90, sensitivity = 90%) and depression (AUC = 0.85, sensitivity = 74%) subscales of the BSI-18 but was poorer for somatization (AUC = 0.67, sensitivity = 52%). A DT cut-off between ≥3 and ≥6 maximised sensitivity and specificity across analyses. CONCLUSIONS: The DT is a valid tool to detect cancer-specific distress, anxiety and depression among prostate cancer patients, particularly close to diagnosis. A cut-off of ≥4 may be optimal soon after diagnosis, and for longer-term assessments, ≥3 was supported. © 2013 The Authors. Psycho-Oncology published by John Wiley & Sons, Ltd.