Co-designing planning interventions to facilitate participation in mail-out bowel cancer screening.

BACKGROUND: Population mail-out bowel cancer screening programs save lives through prevention and early detection; however, their effectiveness is constrained by low participation rates. Many non-participants are "intenders"; that is, they intend to screen but fail to do so, often forgetting or procrastinating. This study aimed to co-design interventions to increase screening participation among intenders in the Australian National Bowel Cancer Screening Program. METHODS: Three semi-structured interviews, and one online cross-sectional survey, were conducted between August 2021 and December 2022. Interviews with people who had completed and returned their latest screening kit ("completers") were first conducted to identify the planning strategies they had used. Using survey data, logistic regressions were conducted to analyse strategies predictive of participants having returned their latest bowel cancer screening kit. Then, intenders were interviewed to explore their opinions of these strategies and worked with researchers to adapt these strategies into prototype interventions to facilitate screening participation. All interviews were analysed using the framework approach of codebook thematic analysis. RESULTS: Interview participants who returned their kit shared their effective planning strategies, such as putting the kit in a visible place or by the toilet, planning a time at home to complete the kit, and using reminders. Survey participants who reported using such strategies were more likely to have completed their screening kit compared to those who did not. Prototype interventions developed and endorsed by intenders included providing a prompt to place the kit or a sticker near the toilet as a reminder, a deadline for kit return, the option to sign up for reminders, and a bag to store the sample in the fridge. CONCLUSIONS: These novel, consumer-led interventions that are built upon the needs and experience of screening invitees provide potential solutions to improve participation in population bowel cancer screening.

Consumer versus expert opinions on bowel cancer screening videos: Findings from a co-design study.

OBJECTIVE: To describe compare and assess expert and consumer evaluations of videos the National Bowel Cancer Screening Program in Australia to inform the future development of effective promotional materials. METHODS: From July to November, 2022 consumers (n = 487) were randomly assigned to see 3 of 15 videos and 34 "experts" (i.e., researchers, clinicians, and health promotion specialists) viewed all 15 videos. Participants completed 22 items reflecting positive and negative perceptions and perceived efficacy in encouraging screening participation. Multiple analyses of covariance assessed mean differences in expert and consumer ratings controlling for age and gender differences. RESULTS: Experts and consumers reported similar perceptions about videos, with no difference in the degree to which each would encourage kit completion. However, compared to those containing personal stories, experts rated instructional and informational videos significantly lower than consumers in terms of encouraging actions that facilitate kit completion. CONCLUSIONS: Experts may underestimate the degree to which information and personal narratives resonate with consumers viewing bowel cancer screening videos. PRACTICAL IMPLICATIONS: It is valuable to consult consumers when designing bowel cancer screening promotion and education videos as opposed to relying solely on expert opinion especially in the context of encouraging actions that lead to kit completion.

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.

From many voices, one question: Community co-design of a population-based qualitative cancer research study.

PURPOSE: This study formed the development stage of a population-based survey aiming to: (i) understand the needs and experiences of people affected by cancer in Queensland, Australia and (ii) recruit a pool of participants for ongoing cancer survivorship research. The current study aimed to co-design and test a single qualitative survey question and study invitation materials to maximise acceptability of, and participation in, the survey and future research. METHODS: Fifty-two community members, including cancer survivors and caregivers, participated across 15 co-design workshops and 20 pretest interviews. During workshops, participants generated and refined ideas for an open-ended survey question and provided feedback on a study invitation letter. The use of a single, open-ended question aims to minimise participant burden while collecting rich information about needs and experiences. The research team then shortlisted the question ideas and revised study invitation materials based on workshop feedback. Next, using interviews, community members were asked to respond to a shortlisted question to test its interpretability and relevance and to review revised invitation materials. Content analysis of participant feedback was used to identify principles for designing study materials. RESULTS: Principles for designing qualitative survey questions were identified from participant feedback, including define the question timeframe and scope; provide reassurance that responses are valid and valued; and use simple wording. Principles for designing study invitation materials were also identified, including communicate empathy and sensitivity; facilitate reciprocal benefit; and include a 'human element'. The qualitative survey question and study invitation materials created using these principles were considered relevant and acceptable for use in a population-based survey. CONCLUSIONS: Through community consultation and co-design, this study identified principles for designing qualitative data collection and invitation materials for use in cancer survivorship research. These principles can be applied by other researchers to develop study materials that are sensitive to the needs and preferences of community members.

A theoretical framework for identifying sociocultural factors that influence nurses' compliance with early warning systems for acute clinical deterioration: A cross-sectional survey.

BACKGROUND: Systematic adoption of early warning systems in healthcare settings is dependent on the optimal and reliable application by the user. Psychosocial issues and hospital culture influence clinicians' patient safety behaviours. OBJECTIVE: (i) To examine the sociocultural factors that influence nurses' EWS compliance behaviours, using a theory driven behavioural model and (ii) to propose a conceptual model of sociocultural factors for EWS compliance behaviour. DESIGN: A cross-sectional survey. SETTING: Nurses employed in public hospitals across Queensland, Australia. PARTICIPANTS: Using convenience and snowball sampling techniques eligible nurses accessed a dedicated web site and survey containing closed and open-ended questions. 291 nurses from 60 hospitals completed the survey. METHODS: Quantitative data were analysed using ANOVA or t-tests to test differences in means. A series of path models based on the theory were conducted to develop a new model. Directed or theory driven content analysis informed qualitative data analysis. RESULTS: Nurses report high levels of previous compliance behaviour and strong intentions to continue complying in the future (M=4.7; SD 0.48). Individual compliance attitudes (ß 0.29, p<.05), perceived value of escalation (ß 0.24, p<.05) and perceived ease or difficulty complying with documentation (ß -0.31, p<.05) were statistically significant, predicting 24% of variation in compliance behaviour. Positive personal charting beliefs (ß 0.14, p<.05) and subjective norms both explain higher behavioural intent indirectly through personal attitudes. High ratings of peer charting beliefs indirectly explain attitudes through subjective norms (ß 0.20, p<.05). Perceptions of control over one's clinical actions (ß -0.24, p<.05) and early warning system training (ß -0.17, p<.05) directly contributed to fewer difficulties complying with documentation requirements. Prior difficulties when escalating care (ß -0.31, p<.05) directly influenced the perceived value of escalating. CONCLUSIONS: The developed theory-based conceptual model identified sociocultural variables that inform compliance behaviour (documenting and escalation protocols). The model highlights areas of clinical judgement, education, interprofessional trust, workplace norms and cultural factors that directly or indirectly influence nurses' intention to comply with EWS protocols. Extending our understanding of the sociocultural and system wide factors that hamper nurses' use of EWSs and professional accountability has the potential to improve the compliance behaviour of staff and subsequently enhance the safety climate attitudes of hospitals. TWEETABLE ABSTRACT: A newly developed model reports nurse's personal attitudes, peer influence, perceived difficulties encountered documenting and escalation beliefs all predict early warning system compliance behaviour.

Testing outside of the National Bowel and Breast Cancer Screening Programs in Queensland, Australia.

Setting: Bowel and breast cancer testing outside of the national programs is not routinely recorded in Australia, limiting our ability to monitor and estimate true screening coverage. Objective: This study makes preliminary estimates of the proportion of eligible participants who test for bowel and breast cancer outside of national programs using a large convenience sample of 31,065 cancer risk calculator respondents. Methods: Logistic regression was applied to assess difference in cancer testing both within and outside respective programs between demographic groups. Results: Almost one-third (9456 respondents) were aged between 50 and 74 years and eligible to participate in the National Bowel Cancer Screening Program (NBCSP) with 8073 female respondents additionally qualifying for the national BreastScreen program. Out of 4166 respondents who reported not to participate in the NBCSP, over 2000 (48.4%) reported 'screening' outside the NBCSP. For breast cancer the rate of self-reported screening outside BreastScreen was even higher, with 2442 (73.8%) of 3308 respondents who did not participate in BreastScreen reporting undergoing testing elsewhere. Interestingly, outer regional or remote residence was associated with lower participation within the NBCSP (OR = 0.92; p = 0.05) and higher testing outside of BreastScreen (OR = 1.21; p < 0.05) screening programs. Conclusion: Findings provide preliminary support for the need to better understand the volume of cancer testing taking place outside the national programs and to address reporting gaps within the health system.

The implementation and mechanisms of advance notification for cancer screening: A scoping review.

OBJECTIVE: To describe and synthesise information on the content and delivery of advance notifications (information about cancer screening delivered prior to invitation) used to increase cancer screening participation and to understand the mechanisms that may underlie their effectiveness. METHODS: Searches related to advance notification and cancer screening were conducted in six electronic databases (APA PsycINFO, CINAHL, Cochrane Library, Embase, PubMed, Web of Science) and results were screened for eligibility. Study characteristics, features of the advance notifications (cancer type, format, delivery time, and content), and the effect of the notifications on cancer screening participation were extracted. Features were summarised and compared across effective versus ineffective notifications. RESULTS: Thirty-two articles were included in this review, reporting on 33 unique advance notifications. Of these, 79% were sent via postal mail, 79% were distributed prior to bowel cancer screening, and most were sent 2 weeks before the screening offer. Twenty-two full versions of the advance notifications were obtained for content analysis. Notifications included information about cancer risk, the benefits of screening, barriers to participation, social endorsement of cancer screening, and what to expect throughout the screening process. Of the 19 notifications whose effect was tested statistically, 68% were found to increase screening (by 0.7%-16%). Effectiveness did not differ according to the format, delivery time, or content within the notification, although some differences in cancer type were observed. CONCLUSION: Future research should explore the effectiveness of advance notification via alternative formats and for other screening contexts and disentangle the intervention- and person-level factors driving its effect on screening participation.

Changes in rural caregivers' health behaviors while supporting someone with cancer: A qualitative study.

PURPOSE: Caring for someone with cancer has a significant impact on usual routines, including caregivers' ability to maintain their own health and wellbeing. Caregivers living in rural areas face additional challenges in supporting someone with cancer, and little is known about the impact of caregiving on the health behaviors of rural caregivers. Therefore, this study explored how caring for someone with cancer affected rural caregivers' health behaviors. METHODS: Through semi-structured interviews, 20 rural caregivers described changes in their health behaviors while caring for someone with cancer and the factors underlying these changes. Specific prompts were provided for diet, physical activity, alcohol, smoking, sleep, social connection and leisure, and accessing health care when needed. Interviews were audio-recorded and transcribed verbatim. Content analysis was used to identify changes in health behaviors and the factors underlying these changes. The factors identified were mapped to the socioecological framework, identifying areas for intervention across multiple levels (individual, interpersonal, organizational, community, and policy). RESULTS: Rural caregivers reported both positive and negative changes to their diet, physical activity, alcohol, and smoking. Sleep, social connection and leisure, and accessing health care were negatively impacted since becoming a caregiver. CONCLUSIONS: Designing interventions to address rural caregivers' coping strategies, reduce carer burden and fatigue, improve access to cooking and exercise facilities and social support while away from home, reduce the need to travel for treatment, and increase the financial support available could yield widespread benefits for supporting the health and wellbeing of rural caregivers.

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.

A Scoping Review of Group Nutrition Education and Cooking Programs for People Affected by Cancer.

BACKGROUND: Group nutrition education and cooking programs for people affected by cancer have the potential to address commonly reported unmet needs for dietary information, as well as provide opportunities for practical and social support. OBJECTIVE: To report the nutrition-related content, delivery methods, and outcomes measured in group nutrition education and cooking programs for people affected by cancer in the published literature, and describe how these programs were developed, implemented, and evaluated. METHODS: A scoping review of academic literature is reported using the preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews guidelines. Key terms such as cancer, nutrition education, and cooking were searched across 4 databases (PubMed, Embase, Cumulative Index of Nursing and Allied Health Literature, and Web of Science) on June 1, 2023, for records published over the past 10 years. Records were independently screened by 2 reviewers. Data extracted included program participants, components, nutrition-related content, delivery methods, outcomes measured, and information about how the program was developed, implemented, and evaluated. RESULTS: Of 2,254 records identified, 41 articles met eligibility criteria, reporting on 37 programs. Most programs were designed for adult cancer survivors (89%) and conducted after primary treatment (81%). Four programs invited caregivers to attend. Almost all programs (97%) included a nutrition education component, and more than half (59%) included cooking activities, with a predominant focus on recommendations and practical skills for healthy eating. Most programs were delivered byregistered dietitians and/or nutritionists (54%) and included group discussions (57%) and active involvement in cooking activities (57%) in program delivery. The participant outcomes that were measured covered dietary, psychosocial, clinical, and anthropometric domains. Many programs were developed with cancer survivors, dietitians or nutritionists, and researchers. No studies reported on sustainability of program implementation or overall costs. Programs were evaluated using data from surveys, focus groups, interviews, and field notes, with articles typically reporting on participation rates, reasons for nonparticipation, program acceptability, aspects of the nutrition-related programs valued by participants, and suggestions for improvement. CONCLUSIONS: Future research should prioritize assessing the effectiveness of these programs for participants. Future development, implementation, and evaluation of these programs should include family members and friends and assess the sustainability of program delivery, including cost-effectiveness.

Decisions and prompts to screen for cervical, bowel, and breast cancer.

OBJECTIVES: To investigate what makes Australians decide to screen and follow through for breast, cervical, and bowel cancer population screening programs. METHODS: A convenience sample (N = 962) answered open-text questions about their decision to screen and what prompted them to act in an online survey. Open text responses were coded based on shared meaning using content analysis. Frequencies of each code were calculated. RESULTS: For breast and cervical screening, decisions were commonly based on screening being routine (32.58%breast and 35.19%cervical) or receiving a reminder (20.53% breast 13.07% cervical), and similarly, common prompts were receiving a reminder (40.68% breast and 29.13% cervical), screening being routine (22.05% breast and 18.65% cervical). Participants reported deciding to screen for bowel cancer due to arrival of home screening test kit (40.50%) or the experience of loved one's cancer (13.57%) and were prompted by arrival of home test kit (23.58%), and convenience (15.72%). CONCLUSIONS: Findings can inform the development of interventions targeting non-participants of cancer screening programs. PRACTICE IMPLICATIONS: Messages to encourage breast and cervical cancer screening should frame screening as part of regular healthcare routine. Messages to encourage bowel cancer screening should encourage immediate use of the screening kit upon arrival.

Anticipatory anxiety and participation in cancer screening. A systematic review.

OBJECTIVES: To synthesize current evidence on the association between anticipatory anxiety, defined as apprehension-specific negative affect that may be experienced when exposed to potential threat or uncertainty, and cancer screening to better inform strategies to maximize participation rates. METHODS: Searches related to cancer screening and anxiety were conducted in seven electronic databases (APA PsycINFO, Scopus, Web of Science, Embase, Cochrane Library, PubMed, CINAHL), with potentially eligible papers screened in Covidence. Data extraction was conducted independently by multiple authors. Barriers to cancer screening for any type of cancer and relationships tested between anticipatory anxiety and cancer screening and intention were categorized and compared according to the form and target of anxiety and cancer types. RESULTS: A total of 74 articles (nparticipants  = 119,990) were included, reporting 103 relationships tested between anticipatory anxiety and cancer screening and 13 instances where anticipatory anxiety was reported as a barrier to screening. Anticipatory anxiety related to a possible cancer diagnosis was often associated with increased screening, while general anxiety showed no consistent relationship. Negative relationships were often found between anxiety about the screening procedure and cancer screening. CONCLUSION: Anticipatory anxiety about a cancer diagnosis may promote screening participation, whereas a fear of the screening procedure could be a barrier. Public health messaging and primary prevention practitioners should acknowledge the appropriate risk of cancer, while engendering screening confidence and highlighting the safety and comfort of screening tests.

SMARTERscreen protocol: a three-arm cluster randomised controlled trial of patient SMS messaging in general practice to increase participation in the Australian National Bowel Cancer Screening Program.

BACKGROUND: Australia persistently has one of the highest rates of colorectal cancer (CRC) in the world. Australia's National Bowel Cancer Screening Program (NBCSP) sends a biennial Faecal Immunochemical Test (FIT)-the 'NBCSP kit'-to everyone eligible for the programme between 50 and 74 years old; however, participation in the programme is low, especially in the 50- to 60-year-old age group. Our previous efficacy trial ('SMARTscreen') demonstrated an absolute increase in uptake of 16.5% (95% confidence interval = 2.02-30.9%) for people sent an SMS with motivational and instructional videos, from their general practice prior to receiving their NBCSP kit, compared to those receiving usual care. Building on the strengths of the SMARTscreen trial and addressing limitations, the 'SMARTERscreen' trial will test the effect on participation in the NBCSP of sending either an SMS only or an SMS with online video material to general practice patients due to receive their NBCSP compared to 'usual care'. METHODS: SMARTERscreen is a three-arm stratified cluster randomised controlled trial involving 63 general practices in two states in Australia. Eligible patients are patients who are aged 49-60 years and due to receive their NBCSP kit within the next 2 weeks during the intervention period. General practices will be equally randomised to three trial arms (21:21:21, estimated average 260 patients/practice). The two interventions include (i) an SMS with an encouraging message from their general practice or (ii) the same SMS with weblinks to additional motivational and instructional videos. The control arm will receive 'usual care'. Using the intention-to-treat approach, primary analysis will estimate the three pair-wise between-arm differences in the proportion of eligible patients who participate in the NBCSP within 6 months of when their kit is sent, utilising screening data from the Australian National Cancer Screening Register (NCSR). Patient intervention adherence to the interventions will also be evaluated. Findings will be incorporated into the Policy1-Bowel microsimulation model to estimate the long-term health benefits and cost-effectiveness of the interventions. DISCUSSION: SMARTERscreen will provide high-level evidence determining whether an SMS or an SMS with web-based material sent to general practice patients prior to receiving their NBCSP kit increases participation in bowel cancer screening. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12623000036617. Registered on 13 January 2023. Trial URL: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=385119&isClinicalTrial=False.

Geographical and spatial variations in bowel cancer screening participation, Australia, 2015-2020.

BACKGROUND: Participation in bowel cancer screening programs remains poor in many countries. Knowledge of geographical variation in participation rates may help design targeted interventions to improve uptake. This study describes small-area and broad geographical patterns in bowel screening participation in Australia between 2015-2020. METHODS: Publicly available population-level participation data for Australia's National Bowel Cancer Screening Program (NBCSP) were modelled using generalized linear models to quantify screening patterns by remoteness and area-level disadvantage. Bayesian spatial models were used to obtain smoothed estimates of participation across 2,247 small areas during 2019-2020 compared to the national average, and during 2015-2016 and 2017-2018 for comparison. Spatial heterogeneity was assessed using the maximized excess events test. RESULTS: Overall, screening participation rates was around 44% over the three time-periods. Participation was consistently lower in remote or disadvantaged areas, although heterogeneity was evident within these broad categories. There was strong evidence of spatial differences in participation over all three periods, with little change in patterns between time periods. If the spatial variation was reduced (so low participation areas were increased to the 80th centile), an extra 250,000 screens (4% of total) would have been conducted during 2019-2020. CONCLUSIONS: Despite having a well-structured evidence-based government funded national bowel cancer screening program, the substantial spatial variation in participation rates highlights the importance of accounting for the unique characteristics of specific geographical regions and their inhabitants. Identifying the reasons for geographical disparities could inform interventions to achieve more equitable access and a higher overall bowel screening uptake.

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.

The Barriers to Bowel Cancer Screening Scale: Examining Structural Validity, Measurement Invariance, and Criterion Validity.

OBJECTIVE: The success of national cancer screening programs, such as the National Bowel Cancer Screening Program (NBCSP) in Australia, depends on public participation, which is currently an alarming 43.5% for the NBCSP. Understanding the barriers that impede screening participation requires valid measurement instruments. This study aims to cross-validate such an instrument with a new, large, and varied sample, as well as assess measurement invariance across subsamples at a greatest risk of nonparticipation (ie, testing whether the scale functions in similar ways across groups). DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional sample of 1158 participants from the target screening population (50-74 years) provided demographic information, responses to the Barriers to Home Bowel Screening (BB-CanS) scale, and information on their previous screening participation. RESULTS: Both the full and the brief versions of the BB-CanS scale showed good model fit for the full sample and for gender and age subsamples. Despite the inter-factor correlations being high, the unidimensional and bi-factor models exhibited poorer fit. Improvement in fit was observed with scale refinement involving the removal of 7 items. All versions of the BB-CanS scale were invariant across gender and age subsamples. Age and gender differences emerged across several barriers and variance in all 4 barriers significantly predicted prior screening participation. CONCLUSION: The BB-CanS scale is a valid measure of 4 highly correlated barriers to home bowel cancer screening: disgust relating to screening, avoidance of test outcomes, practical difficulty (or challenges), and the need for a sense of greater autonomy. All versions of the instrument measure the equivalent construct across age and gender groups. Observed differences in barriers across at-risk groups provide targets for future intervention.

Survivorship care plans and information for rural cancer survivors.

PURPOSE: The purpose of the study was to investigate the amount and type of survivorship care information received by cancer survivors living in rural Australia and whether this varies according to demographic factors or cancer type. METHODS: Self-reported receipt of a survivorship care plan (SCP) and information on various aspects of survivorship care (e.g., managing side effects, healthy lifestyles, psychosocial advice and monitoring for recurrence) were collected from 215 cancer survivors who had returned home to a rural area in Queensland Australia after receiving cancer treatment in a major city within the previous 5 years (72% in the previous 12 months). Logistic regression was used to assess for differences across demographic factors and cancer type. RESULTS: Only 35% of participants reported receiving a SCP and proportions of those reporting the receipt of specific information varied from 74% for information on short-term side effects to less than 30% for information on finances, chemoprevention and monitoring for signs of recurrence. No significant differences were found in the receipt of survivorship care information across demographic factors or cancer type. CONCLUSIONS: Findings suggest that cancer survivors living in rural areas are not consistently provided with adequate survivorship care information, particularly that pertaining to long-term health and recovery. IMPLICATIONS FOR CANCER SURVIVORS: Without improved systems for delivering survivorship care information to patients returning home to rural communities after treatment, these cancer survivors risk missing out on necessary information and advice to maintain their health, wellbeing and long-term recovery.

Psychological distress and bowel cancer screening participation.

OBJECTIVE: To better understand barriers to participation in mail-out bowel cancer screening programs, two survey studies tested the relationship between psychological distress and self-reported bowel cancer screening. METHODS: First, a nationally representative sample of Australians N = 5421 completed measures of bowel cancer screening and psychological distress (using the Kessler Psychological Distress Scale; K10). Second, N = 479 completed a survey measuring participation in the National Bowel Cancer Screening Program (NBCSP) and psychological distress using the Depression, Anxiety and Stress Scale. In both studies, logistic regressions were conducted to test relationships between psychological distress and self-reported screening participation. RESULTS: Study one found that psychological distress had a significant quadratic effect on having ever screened for bowel cancer, where screening rates were similar for those with low, moderate, or high levels of distress, but were lower for those with very high levels of distress. In study two, depression scores had a negative linear relationship with NBCSP participation (higher depression levels were associated with lower screening participation), and anxiety had a quadratic effect whereby NBCSP participation rates were higher with increasing levels of anxiety except in the severe category, where participation was significantly lower. CONCLUSIONS: Findings indicate that psychological distress has a complex relationship with screening, and those with extreme levels of distress consistently show lower participation rates. Special efforts to encourage screening may be required for those experiencing extreme psychological distress and mental health disorders.

Support-seeking by cancer caregivers living in rural Australia.

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

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

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