"Too young to have this kind of diagnosis": A qualitative exploration of younger adults' experiences of colorectal cancer diagnosis.

OBJECTIVE: Colorectal cancer (CRC) incidence is rising among adults under the age of 50 (early- or young-onset CRC). This population is more likely to have advanced-stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision-making during a diagnosis of young-onset CRC. METHODS: Semi-structured interviews were conducted with 17 participants with young-onset CRC diagnosed in 2021-2022 in Victoria, Australia. Interviews were conducted online or by phone an average 7 months (range 1-13) after diagnosis. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis. RESULTS: Five themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. Participants' decision-making evolved over the diagnostic period. As participants perceived urgency to act, they took on a more active role in decision-making, utilising personal resources to access timely care. Their decisions were shaped by stage-of-life considerations, including employment and caring for a young family, with the COVID-19 pandemic adding "…a whole other layer of complexity" to the process. CONCLUSIONS: Younger adults with CRC make decisions in the context of unique considerations, adapting to reduce time to diagnosis, with decisions complicated by the COVID-19 pandemic. Greater support from health care providers/systems in the diagnostic period may improve timeliness of CRC diagnosis and outcomes in younger adults.

Web-based cognitive rehabilitation intervention for cancer-related cognitive impairment following chemotherapy for aggressive lymphoma: protocol for a randomised pilot trial.

INTRODUCTION: Cancer-related cognitive impairment is common among people diagnosed with and treated for cancer. This can be a distressing and disabling side effect for impacted individuals. Interventions to mitigate cognitive dysfunction are available, but, to date, most have been trialled in samples that are largely or exclusively composed of people with solid tumours. Intervention strategies to support cognitive functioning are needed, but there is a paucity of research in this area. The main aim of this study is to test the feasibility and acceptability of methods and procedures intended for use in a definitive trial of a web-based cognitive rehabilitation programme, Responding to Cognitive Concerns (eReCog), in people who have received chemotherapy for aggressive lymphoma. METHODS AND ANALYSIS: The proposed study is a single-site, parallel-group, pilot randomised controlled trial, with one baseline and one follow-up (or postintervention) assessment. 38 people from the target population with low perceived cognitive function based on the Cognitive Change Screen will be recruited from a specialist cancer centre between July 2023 and June 2024. After baseline assessment, participants will be randomised one-to-one to receive usual care only (a factsheet about changes in memory and thinking for people with cancer) or eReCog plus usual care. The 4-week eReCog intervention consists of four online modules offering psychoeducation on cognitive impairment associated with cancer and its treatment, skills training for improving memory, and attention and relaxation training. Study outcomes will include the feasibility of recruitment and retention at follow-up assessment (primary outcomes), as well as adherence to, usability of and intrinsic motivation to engage with eReCog, and compliance with study measures. The potential efficacy of eReCog will also be evaluated. ETHICS AND DISSEMINATION: Ethical approval was granted by the Peter MacCallum Cancer Centre Human Research Ethics Committee in Victoria, Australia (HREC/97384/PMCC). Study findings will be disseminated via peer-reviewed publications and conference presentations. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry, ACTRN12623000705684.

Discussions with patients about referral pathways and costs in the diagnosis and treatment of colorectal cancer in Victoria, Australia.

BACKGROUND AND OBJECTIVES: Colorectal cancer (CRC) survival in Australia differs by health insurance status, but why this occurs is uncertain. There are growing concerns about out-of-pocket healthcare costs. We examined patient experiences of referral pathways to diagnosis and treatment of CRC in Victoria, Australia, and discussions about costs, comparing public, private and mixed healthcare system users. METHOD: Semistructured telephone interviews were conducted with 16 purposively sampled, English-speaking patients aged ≥40 years with CRC. Interviews were recorded, transcribed and analysed thematically. RESULTS: Private patients described greater out-of-pocket expenses balanced by greater choice of provider and access. Public patients perceived limited choice in their diagnostic or treatment provider, although some considered switching systems. Patients trusted their general practitioner or specialist for referrals. Discussions about costs did not meet guideline recommendations. DISCUSSION: There are limited opportunities for informed decision making about public versus private care for cancer diagnosis and treatment, which could contribute to inequalities in outcomes.

Simulating the healthcare workforce impact and capacity for pancreatic cancer care in Victoria: a model-based analysis.

BACKGROUND: The incidence of pancreatic cancer is rising. With improvements in knowledge for screening and early detection, earlier detection of pancreatic cancer will continue to be more common. To support workforce planning, our aim is to perform a model-based analysis that simulates the potential impact on the healthcare workforce, assuming an earlier diagnosis of pancreatic cancer. METHODS: We developed a simulation model to estimate the demand (i.e. new cases of pancreatic cancer) and supply (i.e. the healthcare workforce including general surgeons, medical oncologists, radiation oncologists, pain medicine physicians, and palliative care physicians) between 2023 and 2027 in Victoria, Australia. The model compares the current scenario to one in which pancreatic cancer is diagnosed at an earlier stage. The incidence of pancreatic cancer in Victoria, five-year survival rates, and Victoria's population size were obtained from Victorian Cancer Registry, Cancer Council NSW, and Australian Bureau of Statistics respectively. The healthcare workforce data were sourced from the Australian Government Department of Health and Aged Care's Health Workforce Data. The model was constructed at the remoteness level. We analysed the new cases and the number of healthcare workforce by profession together to assess the impact on the healthcare workforce. RESULTS: In the status quo, over the next five years, there will be 198 to 220 stages I-II, 297 to 330 stage III, and 495 to 550 stage IV pancreatic cancer cases diagnosed annually, respectively. Assuming 20-70% of the shift towards pancreatic cancer's earlier diagnosis (shifting from stage IV to stages I-II pancreatic cancer within one year), the stages I-II cases could increase to 351 to 390 or 598 to 665 per year. The shift to early diagnosis led to substantial survival gains, translating into an additional 284 or 795 out of 5246 patients with pancreatic cancer remaining alive up to year 5 post-diagnosis. Workforce supply decreases significantly by the remoteness levels, and remote areas face a shortage of key medical professionals registered in delivering pancreatic cancer care, suggesting travel necessities by patients or clinicians. CONCLUSION: Improving the early detection and diagnosis of pancreatic cancer is expected to bring significant survival benefits, although there are workforce distribution imbalances in Victoria that may affect the ability to achieve the anticipated survival gain.

Information needs in breast reconstruction after mastectomy: a qualitative analysis of free-text responses from 2077 women.

BACKGROUND: For many, breast reconstruction following mastectomy (BR) forms an integral part of breast cancer survivorship. For those considering BR, provision of information is essential to allow informed decisions. Using free-text responses from a survey of breast cancer survivors, this study aims to understand current gaps in information regarding BR. METHOD: At the end of an online survey assessing BR experiences, participants were asked the open-ended question: "Thinking about women who may experience BR in the future, is there anything you think needs to change so that they have a better experience?". Responses were analysed to identify common themes. RESULTS: 3384 people completed the survey with 2,077 (61%) responding to the open-ended question. Three themes were identified: (1) content of information, (2) managing expectations, and (3) information sources, each associated with multiple subthemes. Information wanted in theme (1) covered a range of topics including BR options, risks, recovery and 'going flat.' Information on BR's psychological impact was also needed, with comments indicating many were not prepared for this. Theme (2) stressed the importance of realistic information about BR outcomes and processes to reduce discrepancies between expectations and experiences. In theme (3), peer insights and photos were important sources of realistic information. CONCLUSION: Multiple gaps exist in BR-related information available to women. BR information needs to be comprehensive, realistic, and provided at the right time to allow informed decision-making. Developing strategies to strengthen existing information provision as well as new resources to fill information gaps might enhance BR experiences.

Health literacy interventions for informal caregivers: systematic review.

AIM: The aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability. METHODS: MEDLINE, CINAHL, PsycINFO and Embase were searched for relevant literature. Articles were included if they focused on adults who provided informal care to someone aged 18+ with a chronic disease/disability. Quantitative studies were included if they reported an intervention designed to improve caregiver health literacy (CHL) and assessed outcomes using a validated measure of health literacy. Qualitative and mixed method studies were included if they described a conceptual model or framework of CHL or developed/assessed the feasibility of an intervention. Study quality was appraised using the Mixed Methods Assessment Tool. RESULTS: Eleven studies were included. Five studies used pre-post design to assess outcomes of an intervention; four described intervention development and/or pilot testing; two described conceptual models. Two of five studies reported pre-post intervention improvements in CHL; one reported an improvement in one of nine health literacy domains; two reported no improvements following intervention. Interventions predominantly aimed to improve: caregiver understanding of the disease, treatment and potential outcomes, day-to-day care, self-care and health provider engagement. Few interventions targeted broader interpersonal and health service factors identified as influencing CHL. DISCUSSION: Evidence on the development and assessment of comprehensive CHL interventions is scarce. Recommendations include the development of interventions that are guided by a CHL framework to ensure they address individual, interpersonal and health service/provider factors that influence CHL.

iCare - a self-directed, interactive online program to improve health and wellbeing for people living with upper gastrointestinal or hepato-pancreato-biliary cancers, and their informal carers: the study protocol for a Phase II randomised controlled trial.

BACKGROUND: Up to 70% of people diagnosed with upper gastrointestinal (GI) tract or hepato-pancreato-biliary (HPB) cancers experience substantial reductions in quality of life (QoL), including high distress levels, pain, fatigue, sleep disturbances, weight loss and difficulty swallowing. With few advocacy groups and support systems for adults with upper GI or HPB cancers (i.e. pancreas, liver, stomach, bile duct and oesophageal) and their carers, online supportive care programs may represent an alternate cost-effective mechanism to support this patient group and carers. iCare is a self-directed, interactive, online program that provides information, resources, and psychological packages to patients and their carers from the treatment phase of their condition. The inception and development of iCare has been driven by consumers, advocacy groups, government and health professionals. The aims of this study are to determine the feasibility and acceptability of iCare, examine preliminary efficacy on health-related QoL and carer burden at 3- and 6-months post enrolment, and the potential cost-effectiveness of iCare, from health and societal perspectives, for both patients and carers. METHODS AND ANALYSIS: A Phase II randomised controlled trial. Overall, 162 people with newly diagnosed upper GI or HPB cancers and 162 carers will be recruited via the Upper GI Cancer Registry, online advertisements, or hospital clinics. Patients and carers will be randomly allocated (1:1) to the iCare program or usual care. Participant assessments will be at enrolment, 3- and 6-months later. The primary outcomes are i) feasibility, measured by eligibility, recruitment, response and attrition rates, and ii) acceptability, measured by engagement with iCare (frequency of logins, time spent using iCare, and use of features over the intervention period). Secondary outcomes are patient changes in QoL and unmet needs, and carer burden, unmet needs and QoL. Linear mixed models will be fitted to obtain preliminary estimates of efficacy and variability for secondary outcomes. The economic analysis will include a cost-consequences analysis where all outcomes will be compared with costs. DISCUSSION: iCare provides a potential model of supportive care to improve QoL, unmet needs and burden of disease among people living with upper GI or HPB cancers and their carers. AUSTRALIAN AND NEW ZEALAND CLINICAL TRIALS REGISTRY: ACTRN12623001185651. This protocol reflects Version #1 26 April 2023.

Psychological Distress Among Parents of Children With Chronic Health Conditions and Its Association With Unmet Supportive Care Needs and Children's Quality of Life.

OBJECTIVE: To assess parent psychological distress in families of children with common chronic health conditions (CHC) and to explore relationships between parent psychological distress, unmet supportive care needs and children's quality of life (QoL). METHOD: Cross-sectional study involving parents of children diagnosed with a common CHC between 0 and 12 years of age and who had received treatment within the last 5 years. Eligible parents completed an online survey, that included the Depression Anxiety Stress Scale (DASS-21) assessing distress in parents and a 34-item assessment of unmet supportive care needs across 6 domains. Parents completed ratings of their child's current functioning (QoL) using the 23-item PedsQL. Multivariable regression models examined the relative association between unmet needs, children's QoL and parents' depression, anxiety, and stress. RESULTS: The sample consisted of 194 parents of children with congenital heart disease (n=97; 50%), diabetes (n=50; 26%), cancer (n=39; 20%), and asthma (n=8; 4%). A significant proportion of parents had moderate-severe symptoms of depression (26%), anxiety (38%), and stress (40%). Of the PedsQL scales, the poorest outcomes were found for emotional and school functioning. Multivariable analyses showed that both higher unmet needs and poorer child emotional functioning were associated with parent depression, anxiety, and stress symptoms. CONCLUSION: Evidence linking parent distress symptoms to higher unmet needs and poorer child emotional functioning suggests these factors may be targets for interventions to alleviate parent distress. Longitudinal research using larger samples is required to replicate findings, and clarify the magnitude and direction of associations.

Factors beyond diagnosis and treatment that are associated with return to work in Australian cancer survivors-A systematic review.

Return to work (RTW) is a marker of functional recovery for working-age cancer survivors. Identifying factors that impact on RTW in cancer survivors is an essential step to guide further research and interventions to support RTW. This systematic review aimed to identify nontreatment, non-cancer-related variables impacting RTW in Australian cancer survivors. A systematic search was conducted in EMBASE, PsycINFO, CINAHL, PubMed, and Google Scholar. Studies were eligible if they included: (1) adults living post diagnosis of malignancy; (2) quantitative data for nontreatment, non-cancer-related variables impacting RTW; (3) only Australian participants. Included studies were critically appraised, and relevant data extracted and synthesized narratively. Six studies were included in the review, published between 2008 and 2020. Studies were of variable quality and mixed methodologies. One study included malignancies of any type with the remainder focusing on survivors of colorectal cancer (n = 3), oropharyngeal cancer (n = 1), and glioblastoma multiforme (n = 1). Multiple factors were related to RTW in individual studies, including older age, presence of three or more comorbidities, fewer work hours pre-morbidly, lower body mass index, longer than recommended sleep duration, and not having private health insurance; however, there was limited consistency in findings between studies. Other variables examined included: occupation type, household income, healthy lifestyle behaviors, flexibility, and duration of employment with workplace; however, no significant associations with RTW were reported. Further research is required to gather compelling evidence on factors that influence RTW in Australian cancer survivors.

Implications of nicotine vaping products for tobacco control in ASEAN low-income and middle-income countries: in-depth interviews with experts from the region.

OBJECTIVES: The use of nicotine vaping products (NVPs) has increased in low-income and middle-income countries (LMICs) in the Association of Southeast Asian Nations (ASEAN) region; however, it is uncertain what implications the presence and use of NVPs have for tobacco control. DESIGN: In-depth interviews were conducted to explore ASEAN tobacco control experts' (n=11) views on the rise of NVP use in ASEAN LMICs, current NVP policies, the potential harm reduction and smoking cessation utilities of these devices, and what implications they may have for tobacco control. Data were analysed using inductive, reflexive thematic analysis. RESULTS: Five themes emerged: (1) NVPs threaten tobacco control in ASEAN LMICs; (2) commercial factors influence youth appeal and access: product attributes, marketing, supply chains; (3) opposition to the smoking cessation and harm reduction utilities of NVPs; (4) policies are inconsistent and fragmented in the region; and (5) tobacco industry power and tactics have been used to capture NVP markets. CONCLUSIONS: ASEAN tobacco control experts believe that NVPs pose a threat to youth and non-smokers in LMICs in the region, largely because of tobacco industry NVP marketing activities. They do not support the use of NVPs for smoking cessation or harm reduction and call for more restrictions and consistent policy enforcement across the region to protect young people, while also cautiously recognising that use of NVPs may have some benefits for smokers.

E-cigarette use and other risk factors associated with tobacco smoking susceptibility among Australian adolescents.

OBJECTIVE: To explore risk factors for smoking susceptibility among Australian adolescents to inform prevention policies and programs. METHODS: Cross-sectional survey of students aged 12-17 years who reported having never smoked (n=4,171). Bivariate associations between smoking susceptibility and a range of factors previously linked to youth smoking and smoking susceptibility were initially examined, with significant factors (p<0.05) included in a final multivariable logistic regression model. RESULTS: Eleven percent of adolescents who had never smoked were susceptible to smoking. Smoking susceptibility was independently associated with ever use of e-cigarettes (adjusted odds ratio [AOR]=3.26, 95% confidence interval [CI]: 1.83-5.81), perceiving those who smoke to be more popular (AOR=2.87, 95% CI: 1.62-5.10), having a close friend/s who smokes (AOR=2.66, 95% CI: 1.61-4.40), not perceiving smoking one or two cigarettes occasionally as personally dangerous (AOR=2.56, 95% CI: 1.61-4.09), and having symptoms of depression (AOR=1.59, 95% CI: 1.06-2.38). CONCLUSIONS: The strongest smoking-initiation risk factor identified was ever use of e-cigarettes, with social norms, harm misperceptions around low-rate tobacco use and mental health also linked to smoking susceptibility. IMPLICATIONS FOR PUBLIC HEALTH: Stronger e-cigarette regulations that reduce promotion to and access by youth, as well as interventions addressing the other identified risk factors, may help prevent future smoking uptake among Australian adolescents.

Caregiver and care recipient health literacy, social support and connectedness on caregiver psychological morbidity: A cross-sectional dyad survey.

BACKGROUND: Caregivers play an important role supporting people diagnosed with cancer, yet report significant unmet information and support needs that impact on their psychological wellbeing. Health literacy and social connectedness are key factors that influence wellbeing, yet few studies have examined their relative role in psychological wellbeing of carers. This study investigated relationships between caregiver and care recipient health literacy, social support, and social connectedness on psychological morbidity in a cancer setting. METHODS: This cross-sectional study included 125 caregiver-cancer care recipient dyads. Participants completed the Health Literacy Survey-EU-Q16, Social Connectedness Scale-Revised, the Medical Outcomes Study-Social Support Survey, and the Depression, Anxiety and Stress Scale-21 (DASS21). Relationships between factors were examined using hierarchical multiple regression with care recipient factors entered at Step 1 and caregiver factors at Step 2. RESULTS: Most caregivers provided care for their spouse (69.6%); caregivers mean total DASS21 score was 24.38 (SD = 22.48). Mean DASS21 subscale scores for depression, anxiety, stress in caregivers were 4.02 (SD = 4.07), 2.7 (SD = 3.64), and 5.48 (SD = 4.24) respectively, suggesting normal range of depression and stress, and mild anxiety. Care recipients had a diagnosis of breast (46.4%), gastrointestinal (32.8%), lung (13.6%), or genitourinary (7.2%) cancer, and a mean DASS21 score of 31.95 (SD = 20.99). Mean DASS21 subscale scores for depression, anxiety, stress in care recipients were 5.10 (SD = 4.18), 4.26 (SD = 3.65), and 6.62 (SD = 3.99) respectively, suggesting mild depression and anxiety, and normal stress scores. Regression analyses showed that only caregiver factors (age, illness/disability, health literacy and social connectedness) were independent predictors of caregiver psychological morbidity (F [10,114] = 18.07, p < 0.001). CONCLUSION(S): Only caregiver, and not care recipient, factors were found to influence caregiver psychological morbidity. While both health literacy and social connectedness influenced caregiver psychological morbidity, perceived social connectedness had the strongest influence. Interventions that ensure caregivers have adequate health literacy skills, as well as understand the value of social connection when providing care, and are supported to develop skills to seek support, have the potential to promote optimal psychological wellbeing in cancer caregivers.

Overcoming challenges in conducting systematic reviews in implementation science: a methods commentary.

Consolidation of the literature using systematic reviews is a critical way to advance a discipline and support evidence-based decision-making in healthcare. However, unique challenges exist that impact the conduct of systematic reviews in implementation science. In this commentary, we reflect on our combined experience to describe five key challenges unique to systematic reviews of primary implementation research. These challenges include (1) descriptors used in implementation science publications, (2) distinction between evidence-based interventions and implementation strategies, (3) assessment of external validity, (4) synthesis of implementation studies with substantial clinical and methodological diversity, and (5) variability in defining implementation 'success'. We outline possible solutions and highlight resources that can be used by authors of primary implementation research, as well as systematic review and editorial teams, to overcome the identified challenges and optimise the utility of future systematic reviews in implementation science.

Unmet supportive care needs of families of children with chronic illness: A systematic review.

BACKGROUND AND AIMS: Unmet supportive care needs (SCN) refer to perceived gaps in the support parents want to manage caregiving activities for children with chronic health conditions (CHC) and the support received. This review aims to systematically identify the unmet SCN of families with children living with five common paediatric CHC and characterise the assessment tools used to measure SCN. DESIGN: Systematic review methodology with narrative synthesis of data. Reporting followed the PRISMA statement guidelines. METHOD: Literature searches were conducted in electronic databases Medline complete, PsycINFO, CINHAL and EMBASE to retrieve relevant articles published between 1990 and July 2022. Eligible studies involved (i) children aged 0-18 years diagnosed with either of cancer, congenital heart disease (CHD), diabetes, asthma, renal disease and (ii) assessment of unmet SCN. Studies involving children with genetic or developmental conditions were excluded. The methodological quality of studies was assessed using JBI assessment tool. RESULTS: Of 6223 articles screened, 34 papers were included (25 quantitative, 5 qualitative and 4 mixed design). Most papers explored unmet needs of families with cancer (n = 26). The remaining articles concerned CHD (n = 5), asthma (n = 2) and mixed CHC (n = 1, renal failure, and diabetes). Information (e.g. treatment, lifestyle, etc.) and health care (e.g. emotional support, practical services, etc.) were the most common unmet need domains across health conditions. A variety of methods and need assessments hampered comparisons between studies both across and within CHC. CONCLUSION: Irrespective of illness, addressing unmet informational or health care needs may help to optimise outcomes and care for children and families living with common CHC. There was considerable variation in reporting styles, study design and need assessments both within and across conditions. RELEVANCE TO CLINICAL PRACTICE: Health care professionals must routinely evaluate the type, quality and quantity of psychoeducation and support that families of children with CHC want and receive. Providing nurses with more effective strategies to assess child and family needs across a broad range of domains may help to increase understanding of where further support for families is required. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution to this study as it involved a systematic review of existing literature.

Unmet supportive care needs in families of children with chronic health conditions: an Australian cross-sectional study.

BACKGROUND: The aim of this study was to identify similarities and differences in the unmet supportive care needs (USCN) of families of children with major chronic health conditions (CHCs) using a universal need assessment tool. METHODS: A cross-sectional online survey involving parents of children with congenital heart disease (CHD), type 1 diabetes mellitus (T1D), cancer, and asthma diagnosed within the last 5 years recruited via social media and support organizations. Thirty-four items assessing the USCN across six domains (care needs, physical and social needs, informational needs, support needs, financial needs, child-related emotional needs) were responded to on a 4-point Likert scale [no need (1) to high need (4)]. Descriptive statistics identified the level of need, and linear regressions identified factors associated with higher need domain scores. Due to small numbers, the asthma group was excluded from comparisons across CHCs. RESULTS: One hundred and ninety-four parents completed the survey (CHD: n = 97, T1D: n = 50, cancer: n = 39, and asthma: n = 8). Parents of children with cancer were most likely to report at least one USCN (92%), followed by parents of children with T1D (62%). The five most commonly reported USCN across CHCs were drawn from four domains: child-related emotional, support, care, and financial. Three need items were included in the top five needs for all conditions. A higher USCN was associated with a greater frequency of hospital visits and the absence of parental support. CONCLUSIONS: Using a universal need assessment tool, this is one of the first studies to characterize USCN in families of children diagnosed with common CHCs. While proportions endorsing different needs varied across conditions, the most endorsed needs were similar across the illness groups. This suggests that support programs or services could be shared across different CHCs. Video Abstract.

How social media can help to understand treatment experiences of survivors of rare cancers: Findings from the Granulosa Cell Tumor Survivor Sisters Facebook group member survey.

BACKGROUND: Engaging with online social media consumer groups for rare cancers may help to develop collaborations between consumers and researchers. This study, a collaboration with the Granulosa Cell Tumor-Survivor Sisters (GCT-SS) Facebook group, explores the results of their survey of member's treatment and follow-up experiences. METHODS: Members of the closed multinational GCT-SS Facebook group completed a 43-item survey covering symptoms, diagnosis, treatment, recurrence, follow-up, and possible risk factors for GCT. Group members could have adult (aGCT) or juvenile (jGCT) disease. Data was collected via an online survey between 2014 and 2019. RESULTS: A total of 743 members (average 4.4 years [SD = 5.9] post-diagnosis) participated including 52 with jGCT. A total of 67% had stage I disease and 8% had stage III-IV at diagnosis, although 30% of aGCT and 25% of jGCT reported recurrent disease at survey completion. A total of 48% of aGCT had laparoscopic surgery, tumor encapsulation was reported by 49%, and tumor bagging reported by 29% overall (37% laparoscopic; 8% open). Recurrence rates were higher when the tumor was cut or ruptured (ruptured: p < .001; cut: p = .01). A total of 19% of aGCT had chemotherapy with this most common for stage II-III disease. Bleomycin, etoposide, and cisplatin protocols became less common over time (diagnosed before 2015: 47% vs. diagnosed post-2015: 21%). CONCLUSIONS: This is one of the largest surveys of GCT treatment. Members of the GCT-SS group report treatment patterns generally in line with those found from clinical audits. Using naturally forming consumer groups may assist with developing the evidence base for care and supporting those living with GCT ovarian cancer. PLAIN LANGUAGE SUMMARY: This study is a collaboration between members of Granulosa Cell Tumor-Survivor Sisters (GCT-SS) Facebook group and researchers to assess members' experiences of treatment and follow-up. A total of 743 members (52 with juvenile GCT) completed an online survey. A total of 67% had stage I disease at diagnosis. Treatment patterns were generally in line with those found from clinical audits: 95% had surgery and 19% of those with adult GCT had chemotherapy. A total of 30% reported recurrent disease, with recurrence occurring within 5 years of diagnosis for 33%. Using naturally forming consumer groups may assist with developing the evidence base for care and supporting those living with GCT ovarian cancer.

Burden prediction in cancer caregivers: role of social support and connectedness.

OBJECTIVES: Caregivers play a key role in providing support to people with cancer. However, caregiving can be stressful and demanding, resulting in perceived caregiver burden. Social connectedness is considered partially independent from social support, yet few studies have examined whether social connectedness impacts caregiver burden. The current study sought to examine: (a) associations among social support, social connectedness and burden in a sample of cancer caregivers and (b) the mediating effect of social connectedness on the relationship between social support and caregiver burden. METHODS: A descriptive cross-sectional study was conducted. Data were collected as part of a larger project. The sample included 125 caregiver-cancer care recipient dyads. Caregivers completed the Social Connectedness Scale-Revised, the Medical Outcomes Study-Social Support Survey and the Zarit Burden Interview. Descriptive statistics, hierarchical multiple regression and mediation analyses were used to examine relationships between variables. RESULTS: Correlation analyses showed higher perceived social support and social connectedness were significantly correlated with lower-reported caregiver burden (p<0.05). The hierarchical regression model showed that both social support and social connectedness were independent predictors of caregiver burden (p<0.001). Social connectedness partially mediated the relationship between social support and caregiver burden. CONCLUSIONS: This study provides new evidence that social support buffers the negative effects of burden in caregivers, suggesting these are potentially modifiable factors of caregiver burden. Increased understanding of the factors that contribute to burden among cancer caregivers will inform targeted supportive care strategies to improve psychological health and well-being in this underserved group.

Exposure to other people's gambling and gambling behaviors in Australian secondary school students.

OBJECTIVE: This study explored associations between exposure to other people's gambling and the prevalence of gambling in the last month, engagement in hard gambling activities (defined as those which occur more frequently, with a quicker determination of outcomes, and/or high payout ratios), and the prevalence of at risk and problem gambling, among a large sample of Australian adolescent school students. METHOD: In 2017, 6,377 students from Victoria and Queensland answered gambling questions as part of the cross-sectional triennial Australian Secondary Students' Alcohol and Drug Survey. Students reported on gambling behaviors (gambling in the last month, types of gambling activities), were assessed for problem gambling using the Diagnostic Statistical Manual IV adapted for Juveniles (DSM-IV-[MR]-J), and reported whether people they knew (parents, siblings, other relatives, best friend, or someone else) had gambled in the last month. Logistic regressions explored the relationship between other people's gambling and student gambling behaviors in the last month. RESULTS: Approximately, one in five students reported that someone from their household gambled in the last month. Overall, 6% of students reported they had gambled, and 4% gambled on a hard gambling activity, in the previous month; 10% were classified as potentially at risk or problem gamblers. Having a parent, sibling, best friend, another relative, or someone else who gambled in the last month were each significantly associated with the three gambling outcomes. CONCLUSIONS: There is a need to address the modeling of gambling behaviors by young people's friends, family, and others, in order to reduce gambling behaviors and problem gambling among Australian adolescents. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Uncovering the advertising and promotional strategies of tobacco companies in Cambodia: recall of below-the-line marketing among young male smokers.

INTRODUCTION: Tobacco companies have used below-the-line marketing in novel ways to promote their brands to youth in low/middle-income countries in Southeast Asia. This study explores how young male smokers in Cambodia experience below-the-line marketing strategies. METHODS: Convenience sampling was used to recruit 147 young male smokers (18-24 years) in Cambodia in early 2020. Local research assistants conducted mixed-methods interviews with participants in Khmer or English. Participants recalled exposure to below-the-line marketing strategies and provided in-depth descriptions about their experiences with individual sales promotions. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using thematic analysis. RESULTS: 54% of participants recalled exposure to at least one below-the-line marketing strategy, including point-of-sale promotions (32.7%), individual sales promotions (27.9%) and online advertising (14.3%). Participants described individual sales promotions in public settings, and recalled that promoters were mostly female, attractive and targeted young males. Tactics used to encourage young people to accept promotional offers included free cigarettes and sample packets, swapping current cigarettes for new brands and collecting consumer details after interviewing. The brands and product features of cigarettes being promoted were readily described by participants. CONCLUSION: This study provides evidence that illegal below-the-line marketing is still occurring in Cambodia, and increased monitoring and enforcement of advertising restrictions is needed.