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1.
Breast Cancer Res Treat ; 203(3): 575-586, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37930491

ABSTRACT

BACKGROUND: Delays to breast cancer treatment can lead to more aggressive and extensive treatments, increased expenses, increased psychological distress, and poorer survival. We explored the individual and area level factors associated with the interval between diagnosis and first treatment in a population-based cohort in Queensland, Australia. METHODS: Data from 3216 Queensland women aged 20 to 79, diagnosed with invasive breast cancer (ICD-O-3 C50) between March 2010 and June 2013 were analysed. Diagnostic dates were sourced from the Queensland Cancer Registry and treatment dates were collected via self-report. Diagnostics-treatment intervals were modelled using flexible parametric survival methods. RESULTS: The median interval between breast cancer diagnosis and first treatment was 15 days, with an interquartile range of 9-26 days. Longer diagnostic-treatment intervals were associated with a lack of private health coverage, lower pre-diagnostic income, first treatments other than breast conserving surgery, and residence outside a major city. The model explained a modest 13.7% of the variance in the diagnostic-treatment interval [Formula: see text]. Sauerbrei's D was 0.82, demonstrating low to moderate discrimination performance. CONCLUSION: Whilst this study identified several individual- and area-level factors associated with the time between breast cancer diagnosis and first treatment, much of the variation remained unexplained. Increased socioeconomic disadvantage appears to predict longer diagnostic-treatment intervals. Though some of the differences are small, many of the same factors have also been linked to screening and diagnostic delay. Given the potential for accumulation of delay at multiple stages along the diagnostic and treatment pathway, identifying and applying effective strategies address barriers to timely health care faced by socioeconomically disadvantaged women remains a priority.


Subject(s)
Breast Neoplasms , Female , Humans , Queensland/epidemiology , Breast Neoplasms/diagnosis , Breast Neoplasms/epidemiology , Breast Neoplasms/therapy , Delayed Diagnosis , Socioeconomic Factors , Australia
2.
Psychooncology ; 33(1): e6243, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37946565

ABSTRACT

OBJECTIVE: To undertake an economic evaluation of a telehealth psychological support intervention for patients with primary brain tumor (PBT). METHODS: A within-trial cost-utility analysis over 6 months was performed comparing a tailored telehealth-psychological support intervention with standard care (SC) in a randomized control trial. Data were sourced from the Telehealth Making Sense of Brain Tumor (Tele-MAST) trial survey data, project records, and administrative healthcare claims. Quality-adjusted life years (QALYs) were calculated based on the EuroQol-5D-5L. Non-parametric bootstrapping with 2000 iterations was used to determine sampling uncertainty. Multiple imputation was used for handling missing data. RESULTS: The Tele-MAST trial included 82 participants and was conducted in Queensland, Australia during 2018-2021. When all healthcare claims were included, the incremental cost savings from Tele-MAST were -AU$4,327 (95% CI: -$8637, -$18) while incremental QALY gains were small at 0.03 (95% CI: -0.02, 0.08). The likelihood of Tele-MAST being cost-effective versus SC was 87% at a willingness-to-pay threshold of AU$50,000 per QALY gain. When psychological-related healthcare costs were included only, the incremental cost per QALY gain was AU$10,685 (95% CI: dominant, $24,566) and net monetary benefits were AU$534 (95% CI: $466, $602) with a 65% likelihood of the intervention being cost-effective. CONCLUSIONS: Based on this small randomized controlled trial, the Tele-MAST intervention is a cost-effective intervention for improving the quality of life of people with PBT in Australia. Patients receiving the intervention incurred significantly lower overall healthcare costs than patients in SC. There was no significant difference in costs incurred for psychological health services.


Subject(s)
Brain Neoplasms , Telemedicine , Humans , Cost-Benefit Analysis , Quality of Life , Health Care Costs , Brain Neoplasms/therapy , Quality-Adjusted Life Years
3.
Psychooncology ; 33(3): e6328, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38504431

ABSTRACT

OBJECTIVE: Nuanced distress screening tools can help cancer care services manage specific cancer groups' concerns more efficiently. This study examines the sensitivity and specificity of a tool specifically for women with gynaecological cancers (called the Gynaecological Cancer Distress Screen or DT-Gyn). METHODS: This paper presents cross-sectional data from individuals recently treated for gynaecological cancer recruited through Australian cancer care services, partner organisations, and support/advocacy services. Receiver operating characteristics analyses were used to evaluate the diagnostic accuracy of the DT-Gyn against criterion measures for anxiety (GAD-7), depression (patient health questionnaire), and distress (IES-R and K10). RESULTS: Overall, 373 individuals aged 19-91 provided complete data for the study. Using the recognised distress thermometer (DT) cut-off of 4, 47% of participants were classified as distressed, while a cut-off of 5 suggested that 40% had clinically relevant distress. The DT-Gyn showed good discriminant ability across all measures (IES-R: area under the curve (AUC) = 0.86, 95% CI = 0.82-0.90; GAD-7: AUC = 0.89, 95% CI = 0.85-0.93; K10: AUC = 0.88, 95% CI = 0.85-0.92; PHQ-9: AUC = 0.85, 95% CI = 0.81-0.89) and the Youden Index suggested an optimum DT cut-point of 5. CONCLUSIONS: This study established the psychometric properties of the DT-Gyn, a tool designed to identify and manage the common sources of distress in women with gynaecological cancers. We suggest a DT cut point ≥5 is optimal in detecting 'clinically relevant' distress, anxiety, and depression in this population.


Subject(s)
Genital Neoplasms, Female , Neoplasms , Humans , Female , Cross-Sectional Studies , Depression/diagnosis , Depression/epidemiology , Stress, Psychological/diagnosis , Stress, Psychological/epidemiology , Australia , Sensitivity and Specificity , Anxiety/diagnosis , Anxiety/epidemiology , Neoplasms/epidemiology , Psychometrics , Genital Neoplasms, Female/diagnosis , Surveys and Questionnaires , Mass Screening
4.
Aust J Rural Health ; 2024 Jun 09.
Article in English | MEDLINE | ID: mdl-38853378

ABSTRACT

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.

5.
Psychooncology ; 32(4): 569-580, 2023 04.
Article in English | MEDLINE | ID: mdl-36694302

ABSTRACT

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.


Subject(s)
Cancer Survivors , Prostatic Neoplasms , Male , Humans , Survivorship , Prostate , Australia , Prostatic Neoplasms/therapy
6.
Psychooncology ; 32(9): 1385-1394, 2023 09.
Article in English | MEDLINE | ID: mdl-37409906

ABSTRACT

OBJECTIVE: This pragmatic randomized control trial aimed to evaluate clinical efficacy of the Making Sense of Brain Tumour program delivered via videoconferencing (Tele-MAST) for improving mental health and quality of life (QoL) relative to standard care in individuals with primary brain tumor (PBT). METHOD: Adults with PBT experiencing at least mild distress (Distress Thermometer ≥4) and caregivers were randomly allocated to the 10-session Tele-MAST program or standard care. Mental health and QoL were assessed pre-intervention, post-intervention (primary endpoint), and 6-weeks and 6-months follow-up. The primary outcome was clinician-rated depressive symptoms on the Montgomery-Asberg Depression Rating Scale. RESULTS: 82 participants with PBT (34% benign, 20% lower-grade glioma, 46% high-grade glioma) and 36 caregivers were recruited (2018-2021). Controlling for baseline functioning, Tele-MAST participants with PBT had lower depressive symptoms at post-intervention (95% CI: 10.2-14.6, vs. 15.2-19.6, p = 0.002) and 6-weeks post-intervention (95% CI: 11.5-15.8 vs. 15.6-19.9, p = 0.010) than standard care, and were almost 4 times more likely to experience clinically reduced depression (OR, 3.89; 95% CI: 1.5-9.9). Tele-MAST participants with PBT also reported significantly better global QoL, emotional QoL and lower anxiety at post-intervention and 6-weeks post-intervention than standard care. There were no significant intervention effects for caregivers. At 6-months follow-up participants with PBT who received Tele-MAST reported significantly better mental health and QoL relative to pre-intervention. CONCLUSIONS: Tele-MAST was found to be more effective for reducing depressive symptoms at post-intervention than standard care for people with PBT but not caregivers. Tailored and extended psychological support may be beneficial for people with PBT.


Subject(s)
Brain Neoplasms , Glioma , Telemedicine , Adult , Humans , Quality of Life , Brain Neoplasms/therapy , Caregivers/psychology , Depression/therapy
7.
Med J Aust ; 219(9): 409-416, 2023 11 06.
Article in English | MEDLINE | ID: mdl-37667512

ABSTRACT

OBJECTIVES: To assess associations between breast cancer-specific survival and timeliness of treatment, based on 2020 Australian guidelines for the treatment of early breast cancer. DESIGN: Population-based cohort study; analysis of linked Queensland Cancer Register, patient medical record, and National Death Index data, supplemented by telephone interviews. SETTING, PARTICIPANTS: Women aged 20-79 years diagnosed with invasive breast cancer during 1 March 2010 - 30 June 2013, followed to 31 December 2020. MAIN OUTCOME MEASURES: Breast cancer-specific survival for women who received or did not receive treatment within the recommended timeframe, overall and for six treatment intervals; optimal cut-points for each treatment interval; characteristics of women for whom treatment was not provided within the recommended timeframe. RESULTS: Of 5426 eligible women, 4762 could be invited for interviews; complete data were available for 3044 women (56% of eligible women, 65% of invited women). Incomplete compliance with guideline interval recommendations was identified for 1375 women (45%); their risk of death from breast cancer during the follow-up period was greater than for those for whom guideline compliance was complete (adjusted hazard ratio [aHR], 1.43; 95% confidence interval [CI], 1.04-1.96). Risk of death was greater for women for whom the diagnosis to surgery interval exceeded 29 days (aHR, 1.76; 95% CI, 1.19-2.59), the surgery to chemotherapy interval exceeded 36 days (aHR, 1.63; 95% CI, 1.13-2.36), or the chemotherapy to radiotherapy interval exceeded 31 days (aHR, 1.83; 95% CI, 1.19-2.80). Treatment intervals longer than recommended were more frequent for women for whom breast cancer was detected by public facility screening (adjusted odds ratio [aOR], 1.58; 95% CI, 1.22-2.04) or by symptoms (aOR, 1.39; 95% CI, 1.09-1.79) than when cancer had been detected in private facilities, and for women without private health insurance (aOR, 1.96; 95% CI, 1.66-2.32) or living outside major cities (aOR, 1.38; 95% CI, 1.18-1.62). CONCLUSIONS: Breast cancer-specific survival was poorer for women for whom the diagnosis to surgery, surgery to chemotherapy, or chemotherapy to radiotherapy intervals exceeded guideline-recommended limits. Our findings support 2020 Australian guideline recommendations regarding timely care.


Subject(s)
Breast Neoplasms , Female , Humans , Breast Neoplasms/therapy , Breast Neoplasms/drug therapy , Cohort Studies , Queensland/epidemiology , Australia , Breast
8.
Neuropsychol Rehabil ; 33(3): 454-479, 2023 Apr.
Article in English | MEDLINE | ID: mdl-35168498

ABSTRACT

It is well recognized that social networks can buffer the adverse effects of chronic illness on psychological wellbeing. However, the functional impairments associated with brain tumour often affect social participation, which may reduce people's capacity to draw upon their social capital for support. This qualitative phenomenological study aimed to understand how brain tumour influences people's ability to manage, maintain, and rebuild their social networks. Participants were 20 individuals (65% female) aged 22-69 years with diverse types of primary brain tumour (50% high grade or malignant) who were on average 35 months post-diagnosis. Two semi-structured interviews, conducted three months apart, comprised a Social Identity Mapping exercise and questions exploring changes in social groups since diagnosis. Two overarching and interrelated themes emerged: engaging and connecting and then versus now. An interplay of barriers, facilitators and strategies influenced people's ability to engage and connect with their social groups, which in turn influenced whether they experienced stability; maintenance and expansion; loss and rebuilding; or loss and shrinkage of their social networks over time. These novel findings highlight the need to develop interventions that specifically focus on enhancing individuals' abilities to maintain or rebuild their social networks.


Subject(s)
Brain Neoplasms , Humans , Female , Male , Qualitative Research , Chronic Disease , Social Participation , Social Identification , Social Support
9.
Breast Cancer Res Treat ; 195(2): 191-200, 2022 Sep.
Article in English | MEDLINE | ID: mdl-35896851

ABSTRACT

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.


Subject(s)
Breast Neoplasms , Australia , Breast Neoplasms/diagnosis , Breast Neoplasms/epidemiology , Breast Neoplasms/therapy , Female , Humans , Prognosis , Prospective Studies , Queensland/epidemiology
10.
Psychooncology ; 31(5): 824-831, 2022 05.
Article in English | MEDLINE | ID: mdl-34967071

ABSTRACT

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.


Subject(s)
Prostatic Neoplasms , Social Support , Australia , Cross-Sectional Studies , Humans , Internet , Male , Prospective Studies , Prostatic Neoplasms/therapy
11.
Psychooncology ; 31(11): 1951-1957, 2022 11.
Article in English | MEDLINE | ID: mdl-35726399

ABSTRACT

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.


Subject(s)
Breast Neoplasms , Female , Humans , Aged , Breast Neoplasms/psychology , Quality of Life/psychology , Social Support , Cross-Sectional Studies , Surveys and Questionnaires , Health Services Needs and Demand
12.
Support Care Cancer ; 30(2): 1011-1014, 2022 Feb.
Article in English | MEDLINE | ID: mdl-34697675

ABSTRACT

The importance of routine distress screening in cancer patients is widely acknowledged, though non-compliance with screening protocols is common. Cited reasons for non-adherence include lack of time and expertise and concerns about the resources associated with the identification and management of clinically relevant distress. This commentary examines changes in distress among people with cancer who participated in a tele-based psychosocial intervention, from the point of initial distress screening to 12 months after commencing the intervention. The goal is to contribute to the discussion about the potential infrastructure requirements of implementing screening programs among screening 'hesitant' cancer care services. Secondary analysis showed a general downward distress trajectory though the greatest reduction occurred between recruitment and baseline and before receiving a low-intensity psychosocial intervention (ß = - 1.84, 95% CI - 2.12, - 1.56). While acknowledging transience of distress in some patients, our results support the possible therapeutic benefit of assessing and validating individuals' distress in the hope of preventing the development of more overt health problems associated with undiagnosed and untreated symptoms.


Subject(s)
Mass Screening , Neoplasms , Humans , Longitudinal Studies , Neoplasms/therapy , Stress, Psychological/diagnosis , Stress, Psychological/epidemiology , Stress, Psychological/etiology
13.
Eur J Cancer Care (Engl) ; 31(4): e13587, 2022 Jul.
Article in English | MEDLINE | ID: mdl-35411632

ABSTRACT

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.


Subject(s)
Caregivers , Neoplasms , Anxiety/psychology , Caregivers/psychology , Chronic Disease , Cross-Sectional Studies , Depression/psychology , Female , Humans , Male , Neoplasms/therapy , Quality of Life/psychology
14.
Neuropsychol Rehabil ; 32(3): 378-406, 2022 Apr.
Article in English | MEDLINE | ID: mdl-33000690

ABSTRACT

ABSTRACTGlioma is a common type of brain tumour that is associated with neurocognitive and psychosocial impairments. This study primarily aimed to investigate the feasibility and acceptability of a videoconferencing format of the Making Sense of Brain Tumour (Tele-MAST) programme. Recruited from a multidisciplinary brain tumour clinic, participants were randomly allocated to the 10-session Tele-MAST programme or standard care, with the latter group offered Tele-MAST after re-assessment. Semi-structured interviews explored participants' experiences of receiving psychological support via the videoconferencing platform. Measures of mental health and quality of life were administered at pre-intervention and post-intervention assessments. Of the 35 patients deemed eligible for the study, 14 (40% accrual) with high grade (71%) or low grade (29%) glioma participated. They were randomized to the Tele-MAST condition (n = 8) or standard care/waitlist (n = 6). Ten individuals commenced the Tele-MAST programme, of whom eight completed ≥8 sessions. The major themes that depicted their experience of the Tele-MAST programme were ease of access and benefits of remote delivery, tailored support and immediacy, and sense of connection versus disconnection. Most participants (63%) demonstrated clinically reliable improvement at post-intervention. These preliminary findings support the feasibility and acceptability of remote delivery of psychological support and highlight the need for a larger-scale evaluation of the Tele-MAST programme.


Subject(s)
Brain Neoplasms , Telemedicine , Feasibility Studies , Humans , Pilot Projects , Quality of Life
15.
BJU Int ; 128 Suppl 3: 18-29, 2021 12.
Article in English | MEDLINE | ID: mdl-32627306

ABSTRACT

OBJECTIVE: To develop contemporary and inclusive prostate cancer survivorship guidelines for the Australian setting. PARTICIPANTS AND METHODS: A four-round iterative policy Delphi was used, with a 47-member expert panel that included leaders from key Australian and New Zealand clinical and community groups and consumers from diverse backgrounds, including LGBTQIA people and those from regional, rural and urban settings. The first three rounds were undertaken using an online survey (94-96% response) followed by a fourth final face-to-face panel meeting. Descriptors for men's current prostate cancer survivorship experience were generated, along with survivorship elements that were assessed for importance and feasibility. From these, survivorship domains were generated for consideration. RESULTS: Six key descriptors for men's current prostate cancer survivorship experience that emerged were: dealing with side effects; challenging; medically focused; uncoordinated; unmet needs; and anxious. In all, 26 survivorship elements were identified within six domains: health promotion and advocacy; shared management; vigilance; personal agency; care coordination; and evidence-based survivorship interventions. Consensus was high for all domains as being essential. All elements were rated high on importance but consensus was mixed for feasibility. Seven priorities were derived for immediate action. CONCLUSION: The policy Delphi allowed a uniquely inclusive expert clinical and community group to develop prostate cancer survivorship domains that extend beyond traditional healthcare parameters. These domains provide guidance for policymakers, clinicians, community and consumers on what is essential for step change in prostate cancer survivorship outcomes.


Subject(s)
Cancer Survivors , Prostatic Neoplasms/complications , Prostatic Neoplasms/therapy , Survivorship , Adolescent , Adult , Aged , Aged, 80 and over , Australia , Cancer Survivors/psychology , Consensus , Decision Making, Shared , Delphi Technique , Female , Health Promotion , Humans , Male , Middle Aged , Patient Navigation , Patient Participation , Prostatic Neoplasms/psychology , Young Adult
16.
Psychooncology ; 30(5): 659-668, 2021 05.
Article in English | MEDLINE | ID: mdl-33421248

ABSTRACT

OBJECTIVE: Online prostate cancer communities (OPCaCs) have emerged as a new source of support, not bounded by geographic barriers, for men living with prostate cancer. This scoping review mapped the existing literature to explore the characteristics and benefits of OPCaCs, identify knowledge gaps, and direct future research. METHODS: A six-step methodological framework for scoping reviews was followed. Four electronic databases were searched for relevant studies. Two authors independently screened titles and abstracts, and full texts, against predefined criteria: empirical research, post 1990, in English-language peer-reviewed journals; participants included prostate cancer survivors; and research explored online peer support. Data were extracted from the studies and quality assessed. RESULTS: The search yielded 905 studies, with 21 selected for synthesis. Despite significant increases in online forum membership, in the last decade, nearly half of the research was conducted over a decade ago. Three studies were rated high quality, the rest moderate. All but one of the studies were observational and cross-sectional. Men reported that sharing information helped them deal with their diagnosis and treatment side effects. They also gained a sense of camaraderie with men who shared similar experiences. Due to divergent methodologies and reporting standards, assessment regarding OPCaC efficacy is not possible. CONCLUSION: OPCaCs may be a cost-effective and accessible resource for delivering peer support to men living with prostate cancer. While self-reported evidence as to the benefits of OPCaCs exists, more longitudinal comparative studies, utilising consistent measurement approaches, are needed to support the claims.


Subject(s)
Cancer Survivors , Prostatic Neoplasms , Counseling , Cross-Sectional Studies , Delivery of Health Care , Humans , Male , Prostatic Neoplasms/therapy
17.
Psychooncology ; 30(7): 1068-1076, 2021 07.
Article in English | MEDLINE | ID: mdl-33534193

ABSTRACT

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.


Subject(s)
Cancer Survivors , Neoplasms , Australia , Female , Humans , Neoplasms/therapy , Patient Acceptance of Health Care
18.
Psychooncology ; 30(10): 1756-1764, 2021 10.
Article in English | MEDLINE | ID: mdl-34044472

ABSTRACT

OBJECTIVE: To develop and test a psychometric instrument for measuring common barriers to completing and returning home bowel cancer screening kits. METHODS: One hundred and ten items were reviewed by an expert panel (n = 15) and presented in an online cross-sectional survey with 427 Australian adults. Exploratory factor analysis was used to identify an optimal factor solution of latent barrier types and aggregated factor scores were examined and compared between demographic groups. RESULTS: Common barriers included having already been screened (32.3%), forgetting about the kit (24.4%), and a lack of planning (21.8%). Barriers reflecting hygiene concerns were also endorsed by over 15% of the sample. Four clear barrier types were evident reflecting disgust, avoidance, lack of autonomy, and physical difficulties. CONCLUSIONS: Findings support calls to apply multi-faceted interventions strategies that address a broad range of barrier types, particularly that which encourage planning, and prompt and facilitate easy stool collection.


Subject(s)
Colorectal Neoplasms , Early Detection of Cancer , Adult , Australia , Cross-Sectional Studies , Humans , Mass Screening
19.
Eur J Epidemiol ; 36(9): 913-925, 2021 Sep.
Article in English | MEDLINE | ID: mdl-34275018

ABSTRACT

While being in a committed relationship is associated with a better prostate cancer prognosis, little is known about how marital status relates to its incidence. Social support provided by marriage/relationship could promote a healthy lifestyle and an increased healthcare seeking behavior. We investigated the association between marital status and prostate cancer risk using data from the PRACTICAL Consortium. Pooled analyses were conducted combining 12 case-control studies based on histologically-confirmed incident prostate cancers and controls with information on marital status prior to diagnosis/interview. Marital status was categorized as married/partner, separated/divorced, single, or widowed. Tumours with Gleason scores ≥ 8 defined high-grade cancers, and low-grade otherwise. NCI-SEER's summary stages (local, regional, distant) indicated the extent of the cancer. Logistic regression was used to derive odds ratios (ORs) and 95% confidence intervals (CI) for the association between marital status and prostate cancer risk, adjusting for potential confounders. Overall, 14,760 cases and 12,019 controls contributed to analyses. Compared to men who were married/with a partner, widowed men had an OR of 1.19 (95% CI 1.03-1.35) of prostate cancer, with little difference between low- and high-grade tumours. Risk estimates among widowers were 1.14 (95% CI 0.97-1.34) for local, 1.53 (95% CI 1.22-1.92) for regional, and 1.56 (95% CI 1.05-2.32) for distant stage tumours. Single men had elevated risks of high-grade cancers. Our findings highlight elevated risks of incident prostate cancer among widowers, more often characterized by tumours that had spread beyond the prostate at the time of diagnosis. Social support interventions and closer medical follow-up in this sub-population are warranted.


Subject(s)
Adenocarcinoma/epidemiology , Marital Status , Prostatic Neoplasms/epidemiology , Aged , Divorce , Humans , Incidence , Male , Marriage , Middle Aged , Population Surveillance , Single Person , Social Support
20.
Support Care Cancer ; 29(5): 2699-2711, 2021 May.
Article in English | MEDLINE | ID: mdl-32978635

ABSTRACT

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.


Subject(s)
Erectile Dysfunction/etiology , Prostatectomy/adverse effects , Prostatic Neoplasms/psychology , Sexual Behavior/psychology , Erectile Dysfunction/psychology , Humans , Male , Middle Aged , Prospective Studies , Prostatectomy/methods , Prostatic Neoplasms/surgery , Surveys and Questionnaires
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