Out-of-pocket health care expenses for people with and without cancer, New South Wales, 2020: a cross-sectional study.

OBJECTIVES: To investigate self-reported out-of-pocket health care expenses, both overall and by cost type, for a large population-based sample of Australians, by cancer status and socio-demographic and medical characteristics. STUDY DESIGN: Cross-sectional study. SETTING, PARTICIPANTS: New South Wales residents participating in the 45 and Up Study (recruited aged 45 years or older during 2005-2009) who completed the 2020 follow-up questionnaire; survey responses linked with New South Wales Cancer Registry data. MAIN OUTCOME MEASURES: Proportions of respondents who reported that out-of-pocket health care expenses during the preceding twelve months exceeded $1000 or $10 000; adjusted odds ratios (aORs) for associations with socio-demographic and medical characteristics. RESULTS: Of the 267 357 recruited 45 and Up Study participants, 45 061 completed the 2020 survey (response rate, 53%); 42.7% (95% confidence interval [CI], 42.2-43.1%) reported that overall out-of-pocket health care expenses during the previous year exceeded $1000, including 55.4% (52.1-58.7%) of participants diagnosed in the preceding two years and 44.9% (43.7-46.1%) of participants diagnosed with cancer more than two years ago. After adjustment for socio-demographic factors, out-of-pocket expenses greater than $1000 were more likely to be reported by participants with cancer than by those without cancer (diagnosis in past two years: aOR, 2.06 [95% CI, 1.77-2.40]; diagnosis more than two years ago: aOR, 1.22 [95% CI, 1.15-1.29]). The odds of out-of-pocket expenses exceeding $1000 increased with area-based socio-economic advantage and household income, and were higher for people with private health insurance (v people with Medicare coverage only: aOR, 1.64; 95% CI, 1.53-1.75). Out-of-pocket expenses exceeding $10 000 were also more likely for participants diagnosed with cancer during the past two years (v no cancer: aOR, 3.30; 95% CI, 2.56-4.26). CONCLUSIONS: People diagnosed with cancer during the past two years were much more likely than people without cancer to report twelve-month out-of-pocket health care expenses that exceeded $1000. Out-of-pocket expenses for people with cancer can exacerbate financial strain at a time of vulnerability, and affect health care equity because some people cannot pay for all available treatments.

Engaging With Health Consumers in Scientific Conferences-As Partners not Bystanders.

INTRODUCTION: It is now widely recognised that engaging consumers in research activities can enhance the quality, equity and relevance of the research. Much of the commentary about consumer engagement in research focuses on research processes and implementation, rather than dissemination in conference settings. This article offers reflections and learnings from consumers, researchers and conference organisers on the 12th Health Services Research Conference, a biennial conference hosted by the Health Services Research Association of Australia and New Zealand (HSRAANZ). METHOD: We were awarded funds via a competitive application process by Bellberry Limited, a national not-for-profit agency with a focus on improving research quality, to incorporate consumer engagement strategies in conference processes and evaluate their impact. FINDINGS: Strategies included consumer scholarships, a buddy system, designated quiet space and consumer session co-chairs; the reflections explored in this paper were collected in the funded, independent evaluation. Our insights suggest a need for more structured consumer involvement in conference planning and design, as well as the development of specific engagement strategies. CONCLUSION: To move toward active partnership in scientific conference settings, our experience reinforces the need to engage consumers as members in designing and conducting research and in presenting research and planning conference content and processes. PUBLIC CONTRIBUTION: Consumer engagement in research dissemination at conferences is the focus of this viewpoint article. Consumers were involved in the conception of this article and have contributed to authorship at all stages of revisions and edits.

Study protocol of an economic evaluation embedded in the Midwives and Obstetricians Helping Mothers to Quit Smoking (MOHMQuit) trial.

BACKGROUND: Tobacco smoking during pregnancy is the most important preventable risk factor for pregnancy complications and adverse birth outcomes and can have lifelong consequences for infants. Smoking during pregnancy is associated with higher healthcare costs related to birth complications and during childhood. Psychosocial interventions to support pregnant women to quit are effective, yet provision of smoking cessation support has been inconsistent. The Midwives and Obstetricians Helping Mothers to Quit Smoking (MOHMQuit) intervention provides systems change, and leadership and clinician elements, to support clinicians to help women stop smoking in pregnancy. There have been few long-term analyses conducted of the cost-effectiveness of smoking cessation interventions for pregnant women that target healthcare providers. This protocol describes the economic evaluation of the MOHMQuit trial, a pragmatic stepped-wedge cluster-randomised controlled implementation trial in nine public maternity services in New South Wales (NSW), Australia, to ascertain whether MOHMQuit is cost-effective in supporting clinicians to help women quit smoking in pregnancy compared to usual care. METHODS: Two primary analyses will be carried out comparing MOHMQuit with usual care from an Australian health care system perspective: i) a within-trial cost-effectiveness analysis with results presented as the incremental cost per additional quitter; and ii) a lifetime cost-utility analysis using a published probabilistic decision analytic Markov model with results presented as incremental cost per quality-adjusted life-year (QALY) gained for mother and child. Patient-level data on resource use and outcomes will be used in the within-trial analysis and extrapolated and supplemented with national population statistics and published data from the literature for the lifetime analysis. DISCUSSION: There is increasing demand for information on the cost-effectiveness of implementing healthcare interventions to provide policy makers with critical information for the best value for money within finite budgets. Economic evaluation of the MOHMQuit trial will provide essential, policy-relevant information for decision makers on the value of evidence-based implementation of support for healthcare providers delivering services for pregnant women. TRIAL REGISTRATIONS: ACTRN12622000167763, registered 2 February 2022.

Travel-associated cost savings to patients and the health system through provision of specialist head and neck surgery outreach clinics in rural New South Wales, Australia.

INTRODUCTION: Centralisation of head and neck surgical services means that patients in regional and remote Australia need to travel long distances for treatment and follow-up, imparting a significant financial burden on patients and the health system. OBJECTIVE: To estimate costs of travel to local outreach clinics and determine potential cost savings to patients and the health system by avoiding patient travel to major cities for head and neck surgical care. DESIGN: Retrospective audit of three head and neck surgery outreach clinics in New South Wales, Australia over 4 years (2017-2020). Direct costs of travel from a patient's residence to their local outreach clinic were estimated. Costs of travel and accommodation to Sydney for an appointment were calculated for different travel modes. Estimated reimbursements for travel through government support schemes were calculated based on published rates. FINDINGS: Some 657 patients attended the three clinics, accounting for 1981 appointments. Depending on mode of travel, the estimated median cost of return travel (including accommodation) to Sydney was $379 to $739 per patient per trip and the median government reimbursement ranged from $182 to $279 per trip. In comparison, the cost of return travel by car to local outreach clinics ranged from $28 to $163 per appointment. Outreach clinics were estimated to save patients a median of $285 per trip and avoided government reimbursements of $215 per trip. DISCUSSION: Despite uptake in telehealth, outreach medical services remain an important asset for people living in regional areas to address inequities in access. However, the cost benefits are likely to be underestimated as our approach did not account for indirect costs associated with travel. CONCLUSION: Outreach head and neck surgical services located in regional areas can reduce the financial burden on both patients and the healthcare system. Greater investment in outreach clinics could ensure sustainability of services to promote equitable access to specialised surgical services.

Paid and unpaid productivity losses due to premature mortality from cancer in Europe in 2018.

When someone dies prematurely from cancer this represents a loss of productivity for society. This loss can be valued and provides a measure of the cancer burden. We estimated paid and unpaid productivity lost due to cancer-related premature mortality in 31 European countries in 2018. Lost productivity was estimated for all cancers combined and 23 cancer sites, overall, by region and country. Deaths aged 15 to 64 were abstracted from GLOBOCAN 2018. Unpaid time lost (housework, caring, volunteering) was derived from Eurostat. Paid and unpaid productivity losses were valued using the human capital approach. In total, 347,149 premature cancer deaths occurred (60% male). The total value of cancer-related lost productivity was €104.6 billion. Of this, €52.9 billion (50.6%) was due to lost paid work, and €51.7 billion (49.4%) to unpaid work. Females accounted for 36.7% of paid work costs but half (51.1%) of the unpaid work costs. Costs were highest in Western Europe (€52.0 billion). The most costly cancer was lung (€21.7 billion), followed by breast (€10.6 billion). The average loss per premature death was highest for Hodgkin's lymphoma (€506 345), melanoma (€450 694), brain cancer (€428 449) and leukaemia (€378 750). Cancer-related lost productivity costs are significant. Almost half are due to unpaid work losses, indicating the importance of considering both paid and unpaid labour in assessing the cancer economic burden. The high cost per premature death of some less common cancers illustrates the potential benefits that could accrue from investment in prevention and control of these cancers.

Work, daily activities and leisure after cancer.

OBJECTIVE: Determine if cancer survivors have lower participation in paid work, more limitations in daily activities or more limitations in leisure compared with those without cancer, stratified by age (working age ≤65 years; retirement age >65 years). Secondary objectives are identifying sociodemographic or clinical factors associated with work, daily activities or leisure and analysis of the relationship between work, daily activities and leisure. METHODS: Secondary analyses, using logistic regression, were performed on three cohorts (lymphoma, prostate and thyroid cancer) from the Dutch Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship (PROFILES) registry and a nationally representative non-cancer sample. RESULTS: Working-age cancer survivors (n = 926) were significantly (p < 0.001) less likely to participate in paid work and more likely to report limitations in daily activities and leisure compared to the non-cancer cohort (n = 1279). Among retirement aged cancer survivors (n = 1046), paid work was significantly more likely (p < 0.001), as were limitations in leisure (p < 0.05), compared with the non-cancer controls (n = 334). CONCLUSIONS: Cancer impacts daily activities and leisure, as well as paid work. These roles are important for cancer survivors' quality of life, suggesting support to return to these activities may be an important component of survivorship care.

A systematic review of fear of cancer recurrence related healthcare use and intervention cost-effectiveness.

OBJECTIVE: Fear of cancer recurrence (FCR) is a common and burdensome psychological condition affecting cancer survivors. This systematic review aims to synthesise current evidence regarding: (1) FCR-related healthcare usage and costs and (2) the cost-effectiveness of FCR treatments. METHODS: We searched MEDLINE, CINAHL, Cochrane and other electronic databases using MeSH headings and keywords for cancer, FCR and costs from their inception to September 2019. Identified studies were screened for eligibility. Original, peer-reviewed journal articles reporting quantitative data from samples of adults treated for cancer written in English were included. Quality was appraised using the Drummond checklist for economic evaluations or the relevant Joanna Briggs Institute Critical Appraisal Tool. RESULTS: Data from 11 studies were extracted and synthesised. Seven studies addressed the costs of FCR and suggested an increase in the use of primary and secondary healthcare. Four studies addressed the cost-effectiveness of different FCR treatments and suggest that some treatments may cost-effectively reduce FCR and improve quality of life. Reviewed treatments had an incremental cost-effectiveness ratio between AU$3,233 and AU$152,050 per quality-adjusted life year gained when adjusted to 2019 Australian dollars. All studies were of sufficient quality to be synthesised in this review. CONCLUSIONS: FCR appears to be associated with greater use of certain healthcare resources, and FCR may be treated cost-effectively. Thus, appropriate FCR treatments may not only reduce the individual burden, but also the strain on the healthcare system. Further high-quality research is needed to confirm this and ensure the future implementation of efficient and sustainable FCR treatments.

Patient Preferences for Anxiety and Depression Screening in Cancer Care: A Discrete Choice Experiment.

OBJECTIVES: Screening for anxiety and depression in cancer care is recommended, as identification is the first step in managing anxiety and depression. Nevertheless, patient preferences for anxiety and depression screening in cancer care are unknown. The objective of this study was to investigate and identify the aspects of an anxiety and depression screening program cancer patients value most, to inform decision-makers about ways to improve patient uptake and ultimately, the provision of patient-centered care. METHODS: A discrete choice experiment was designed and implemented within an Australian cancer population sample. Participants were presented with a series of hypothetical screening programs labeled as "screening program 1" and "screening program 2" and were asked to choose their preferred one. The discrete choice experiment was administered using an online survey platform. A mixed logit and a latent class analysis was conducted. RESULTS: Participants (n = 294) preferred screening to be conducted by a cancer nurse, face-to-face, and at regular intervals (monthly or every 3 months). Participants also preferred follow-up care to be delivered by mental health professionals embedded within the cancer care team. Factors that influenced preferences were the low cost and short waiting times for access to care. CONCLUSIONS: Cancer patients prefer cancer services with integrated mental healthcare services. To maximize patient uptake, anxiety and depression screening programs should be routinely offered, delivered by oncology healthcare staff in a face-to-face format, and, postscreening, to be care for by mental health professionals embedded within the cancer service.

Clinical assessment of chemotherapy-induced peripheral neuropathy: a discrete choice experiment of patient preferences.

PURPOSE: Up to 40% of cancer patients treated with neurotoxic chemotherapies experience chemotherapy-induced peripheral neuropathy (CIPN). Currently, there is no gold standard assessment tool for CIPN and there is little information in the literature on patient preferences for such assessments. This study aims to address this gap by identifying the features of a CIPN assessment tool that cancer patients value. METHODS: An online discrete choice experiment (DCE) survey of neurotoxic chemotherapy-treated patients was implemented. Respondents completed 8 choice questions each. In each choice question, they chose between two hypothetical CIPN assessment tools, each described by six attributes: impact on quality of life; level of nerve damage detected; questionnaire length; physical tests involved; impact on clinic time; impact on care. RESULTS: The survey was completed by 117 respondents who had a range of cancers of which breast cancer was the most common. Respondents favoured an assessment tool that includes a physical test and that asks about impact on quality of life. Respondents were strongly opposed to clinicians, alone, deciding how the results of a CIPN assessment might influence their care especially their chemotherapy treatment. They were concerned about small changes in their CIPN, independent of clinical relevance. Respondents were willing to add half an hour to the usual clinic time to accommodate the CIPN assessment. CONCLUSION: The findings of this DCE will assist clinicians in choosing an assessment tool for CIPN that is satisfactory to both clinician and patient.

Development and usability evaluation of an online self-management intervention for fear of cancer recurrence (iConquerFear).

OBJECTIVE: To develop and evaluate the usability of iConquerFear, an online self-management adaptation of an efficacious face-to-face therapist-delivered treatment for fear of cancer recurrence (FCR). METHODS: iConquerFear development was theory based and person based. Development was guided by Ritterband et al's behaviour change model for internet interventions. iConquerFear end users (cancer survivors) provided iterative feedback in accordance with Yardley et al's person-based approach to maximise engagement and usability. Online focus groups and cognitive interviews were conducted to evaluate the usability of iConquerFear. Discussions were recorded, transcribed verbatim, and thematically analysed. RESULTS: Five online FCR modules were developed. Twenty-three cancer survivors (47% of those eligible) participated; 11/23 (58%) were breast cancer survivors, and average age was 53 years (SD = 10.8). Thematic saturation was reached after six focus groups (n = 16) and seven individual think-aloud interviews. Thematic analysis produced five overarching themes: easy navigation essential; satisfaction and engagement with content; flexible access is key; normalising and empowering; and a useful first step. CONCLUSIONS: Online self-management interventions like iConquerFear have the potential to address the unmet supportive care needs reported by burgeoning numbers of cancer survivors. However, that potential may not be realised unless interventions are rigorously developed and user tested, as benefits are constrained by limited engagement. Themes from the usability testing of iConquerFear highlight the importance of developing flexible, tailored, interactive, and contextual online self-management interventions for people with cancer.

How Are Debriefing Questions Used in Health Discrete Choice Experiments? An Online Survey.

OBJECTIVES: Debriefing questions can assess if respondents understand discrete choice experiments (DCEs) and are answering in a way consistent with theories of decision making and utility maximization. Nevertheless, there is limited literature about how often debriefing questions are included or how the results are used in health economics. The aim of this study was to conduct a survey of the frequency, type, and analysis of debriefing questions in health DCEs. METHODS: We conducted an online survey of authors of published health DCEs, asking about their use of debriefing questions, including frequency, type, and analysis. We descriptively analyzed the sample characteristics and responses. Free-text questions were analyzed with qualitative thematic analysis. RESULTS: We received 70 responses (43% response rate), of which 50% reported using debriefing questions. They were most commonly designed to assess difficulty (91%), understanding (49%), and attribute nonattendance (31%) rather than learning effects (3%) or monotonicity (11%). On average, 37% of debriefing questions were analyzed (range, 0% to 69%), and the results were used <50% of the time, usually to exclude respondents or interpret overall results. Researcher experience or confidence with DCEs did not affect their use of debriefing questions. CONCLUSIONS: These results suggest that although half of researchers conducting health DCEs use debriefing questions, many do not analyze, use, or report the responses. Given the additional respondent burden, there is a need for reliable and valid debriefing questions. In the meantime, the inclusion, analysis, and reporting of debriefing questions should be carefully considered before DCE implementation.

Financial toxicity and employment status in cancer survivors. A systematic literature review.

BACKGROUND: Financial toxicity has traditionally been attributed to the rising costs of cancer care. As ability to work impacts one's financial situation, limited employment and reduced income may also contribute to financial toxicity. We examined evidence of the association between financial toxicity and employment status in cancer survivors. METHODS: A systematic literature review was performed via PubMed, Web of Science, CINAHL, and PsycINFO with search terms including "Cancer," "Financial toxicity," and "Employment" on September 25, 2019. RESULTS: Thirty-one papers met eligibility criteria. Thirteen studies were rated as having high quality, 16 as adequate, and two as low. Being actively treated for cancer had serious negative consequences on employment and medical expenditures. Unemployment, changed or reduced employment, lost days at work, poor work ability, and changes to employment were associated with a higher risk of financial toxicity. Patients who were younger, non-white, unmarried, of low education, living with dependents, residing in non-metropolitan service areas, with lower income, and of low socioeconomic status were more at risk of financial toxicity. Other variables associated with financial toxicity included having a mortgage/personal loan, higher out of pocket costs and household bills, limited health insurance, more severely ill, on active treatment, and lower functioning or quality of life. CONCLUSION: Cancer negatively affects employment, and these changes are significant contributors to financial toxicity. Researchers, healthcare professionals, and patients themselves should all cooperate to tackle these complex issues.

Productivity losses associated with premature mortality due to cancer in Russia: A population-wide study covering 2001-2030.

Aims: Productivity losses related to premature cancer mortality have been assessed for most developed countries but results for Russia are limited to cross-sectional reports. The aim of this study was to quantify productivity costs due to cancer mortality in Russia between 2001 and 2015 and project this to 2030. Methods: Cancer mortality data (2001-2015) were acquired from the State Cancer Registry, whereas population data, labour force participation rates and annual earnings were retrieved from the Federal State Statistics Service. Cancer mortality was projected to 2030 and the human capital approach was applied to estimate productivity losses. Results: The total annual losses increased from US6.5b in 2001-2005 to US$8.1b in 2011-2015, corresponding to 0.24% of the annual gross domestic product. The value is expected to remain high in 2030 (US$7.5b, 0.14% of gross domestic product). Productivity losses per cancer death are predicted to grow faster in women (from US$18,622 to US$22,386) than in men (from US$25,064 to US$28,459). Total losses were found to be highest for breast cancer in women (US$0.6b, 20% of overall losses in women) and lung cancer in men (US$1.2b, 24%). The absolute predicted change of annual losses between 2011-2015 and 2026-2030 was greatest for cervix uteri (+US$214m) in women and for lip, oral and pharyngeal cancers in men (+US$182m). Conclusions: In Russia, productivity losses due to premature cancer mortality are substantial. Given the expected importance especially for potentially preventable cancers, steps to implement effective evidence-based national cancer control policies are urgently required.

Clinical anxiety disorders in the context of cancer: A scoping review of impact on resource use and healthcare costs.

Prevalence of clinical anxiety among patients with cancer is higher than the general population. Clinical anxiety in people with other medical conditions is associated with greater healthcare resource use and costs. This scoping review describes the evidence relating to costs associated with clinical anxiety in cancer populations. We conducted searches of online databases Medline, Embase, Cinahl, National Health Service Economic Evaluation Database (NHS-EED) and Cochrane Library of systematic reviews to identify studies published between 2006 and 2017 that included healthcare cost in terms of monetary or health service utilisation variables. Of 411 records screened, six studies met inclusion criteria. Only one study used formal diagnostic criteria to identify clinical anxiety. The healthcare system perspective was most common, with direct costs such as medications, hospital visits, type of therapy and use of mental health services reported. All studies found anxiety was related to increased costs/resource use; however, methodological differences mean specific costs and potential impact of interventions on resource use remain relatively unquantified. Despite the prevalence of clinical anxiety, there is little data on the economic impact on health service costs and utilisation. Future studies quantifying the true cost are urgently needed to inform healthcare service planning and delivery, and quality improvement initiatives.

Projecting productivity losses for cancer-related mortality 2011 - 2030.

BACKGROUND: When individuals stop working due to cancer this represents a loss to society - the loss of productivity. The aim of this analysis was to estimate productivity losses associated with premature mortality from all adult cancers and from the 20 highest mortality adult cancers in Ireland in 2011, and project these losses until 2030. METHODS: An incidence-based method was used to estimate the cost of cancer deaths between 2011 and 2030 using the Human Capital Approach. National data were used for cancer, population and economic inputs. Both paid work and unpaid household activities were included. Sensitivity analyses estimated the impact of assumptions around future cancer mortality rates, retirement ages, value of unpaid work, wage growth and discounting. RESULTS: The 233,000 projected deaths from all invasive cancers in Ireland between 2011 and 2030 will result in lost productivity valued at €73 billion; €13 billion in paid work and €60 billion in household activities. These losses represent approximately 1.4 % of Ireland's GDP annually. The most costly cancers are lung (€14.4 billion), colorectal and breast cancer (€8.3 billion each). However, when viewed as productivity losses per cancer death, testis (€364,000 per death), cervix (€155,000 per death) and brain cancer (€136,000 per death) are most costly because they affect working age individuals. An annual 1 % reduction in mortality reduces productivity losses due to all invasive cancers by €8.5 billion over 20 years. CONCLUSIONS: Society incurs substantial losses in productivity as a result of cancer-related mortality, particularly when household production is included. These estimates provide valuable evidence to inform resource allocation decisions in cancer prevention and control.

Comparing the costs of three prostate cancer follow-up strategies: a cost minimisation analysis.

PURPOSE: Prostate cancer follow-up is traditionally provided by clinicians in a hospital setting. Growing numbers of prostate cancer survivors mean that this model of care may not be economically sustainable, and a number of alternative approaches have been suggested. The aim of this study was to develop an economic model to compare the costs of three alternative strategies for prostate cancer follow-up in Ireland-the European Association of Urology (EAU) guidelines, the National Institute of Health Care Excellence (NICE) guidelines and current practice. METHODS: A cost minimisation analysis was performed using a Markov model with three arms (EAU guidelines, NICE guidelines and current practice) comparing follow-up for men with prostate cancer treated with curative intent. The model took a health care payer's perspective over a 10-year time horizon. RESULTS: Current practice was the least cost efficient arm of the model, the NICE guidelines were most cost efficient (74 % of current practice costs) and the EAU guidelines intermediate (92 % of current practice costs). For the 2562 new cases of prostate cancer diagnosed in 2009, the Irish health care system could have saved €760,000 over a 10-year period if the NICE guidelines were adopted. CONCLUSIONS: This is the first study investigating costs of prostate cancer follow-up in the Irish setting. While economic models are designed as a simplification of complex real-world situations, these results suggest potential for significant savings within the Irish health care system associated with implementation of alternative models of prostate cancer follow-up care.

Distance from treating hospital and colorectal cancer survivors' quality of life: a gendered analysis.

PURPOSE: Distance from residence to hospital has been associated with clinical outcomes for colorectal cancer patients. However, little is known about the association of remoteness with quality of life (QoL) for colorectal cancer survivors. We examined the relationship between distance from hospital and colorectal cancer survivors' QoL, with a specific focus on gender. METHODS: Colorectal cancer survivors in Ireland who were more than 6-months postdiagnosis completed the European Organization for Research and Treatment of Cancer QLQ-C30, measuring global health status (GHS) and physical, role, cognitive, social, and emotional functioning. Bootstrap linear regression was used to evaluate the association between remoteness and QoL scales, controlling for demographic and clinical variables. Separate models were generated for the full sample, for women, and for men. RESULTS: The final analytical sample was 496 colorectal cancer survivors; 186 women and 310 men. Living remote from the treating hospital was associated with lower physical functioning (coefficient -4.38 [95 % confidence interval -8.13, -0.91]) and role functioning (coeff. -7.78 [-12.64, -2.66]) among all colorectal cancer survivors. In the separate gender models, remoteness was significantly associated with lower physical (coeff. -7.00 [-13.47, -1.49]) and role functioning (coeff. -11.50 [-19.66, -2.65]) for women, but not for men. Remoteness had a significant negative relationship to GHS (coeff. -4.31 [-8.46, -0.27]) for men. CONCLUSIONS: Aspects of QoL are lower among colorectal cancer survivors who live far from their treating hospital. There are gender differences in how remoteness is related to QoL domains. The results of this study suggest that policy makers, service providers, and health care professionals should consider the specific QoL needs of remote colorectal cancer survivors, and be attuned to and prepared to address the differing needs of men and women.

The magnitude and characteristics of the population of cancer survivors: using population-based estimates of cancer prevalence to inform service planning for survivorship care.

BACKGROUND: Rising cancer incidence and survival mean that the number of cancer survivors is growing. Accumulating evidence suggests many survivors have long-term medical and supportive care needs, and that these needs vary by survivors' socio-demographic and clinical characteristics. To illustrate how cancer registry data may be useful in survivorship care service planning, we generated population-based estimates of cancer prevalence in Ireland and described socio-demographic and clinical characteristics of the survivor population. METHODS: Details of people diagnosed with invasive cancer (ICD10 C00-C96) during 1994-2011, and who were still alive on 31/12/2011, were abstracted from the National Cancer Registry, and tabulated by cancer site, sex, current age, marital status, initial treatment, and time since diagnosis. Associations were investigated using chi-square tests. RESULTS: After excluding non-melanoma skin cancers, 17-year cancer prevalence in Ireland was 112,610 (females: 58,054 (52%) males: 54,556 (48%)). The four most prevalent cancers among females were breast (26,066), colorectum (6,598), melanoma (4,593) and uterus (3,505) and among males were prostate (23,966), colorectum (8,207), lymphoma (3,236) and melanoma (2,774). At the end of 2011, 39% of female survivors were aged <60 and 35% were ≥70 compared to 25% and 46% of males (p < 0.001). More than half of survivors of bladder, colorectal and prostate cancer were ≥70. Cancers with the highest percentages of younger (<40) survivors were: testis (50%); leukaemia (females: 28%; males: 22%); cervix (20%); and lymphoma (females: 19%; males: 20%). Fewer female (57%) than male (64%) survivors were married but the percentage single was similar (17-18%). More female (25%) than male survivors (18%; p < 0.001) were ≥10 years from diagnosis. Overall, 69% of survivors had undergone cancer-directed surgery, and 39%, 32% and 18% had received radiotherapy, chemotherapy and hormone therapy, respectively. These frequencies were higher among females than males (surgery: 82%, 54%; radiotherapy: 42%, 35%; chemotherapy: 40%, 22%; hormone therapy: 23%, 13%). CONCLUSIONS: These results reveal the socio-demographic and clinical heterogeneity of the survivor population, and highlight groups which may have specific medical and supportive care needs. These types of population-based estimates may help decision-makers, planners and service providers to develop follow-up and after-care services to effectively meet survivors' needs.

Role Preferences in Medical Decision Making: Relevance and Implications for Health Preference Research.

Health preference research (HPR) is being increasingly conducted to better understand patient preferences for medical decisions. However, patients vary in their desire to play an active role in medical decisions. Until now, few studies have considered patients' preferred roles in decision making. In this opinion paper, we advocate for HPR researchers to assess and account for role preferences in their studies, to increase the relevance of their work for medical and shared decision making. We provide recommendations on how role preferences can be elicited and integrated with health preferences: (1) in formative research prior to a health preference study that aims to inform medical decisions or decision makers, (2a) in the development of health preference instruments, for instance by incorporating a role preference instrument and (2b) by clarifying the respondent's role in the decision prior to the preference elicitation task or by including role preferences as an attribute in the task itself, and (3) in statistical analysis by including random parameters or latent classes to raise awareness of heterogeneity in role preferences and how it relates to health preferences. Finally, we suggest redefining the decision process as a model that integrates the role and health preferences of the different parties that are involved. We believe that the field of HPR would benefit from learning more about the extent to which role preferences relate to health preferences, within the context of medical and shared decision making.

Public Preferences for Genetic and Genomic Risk-Informed Chronic Disease Screening and Early Detection: A Systematic Review of Discrete Choice Experiments.

PURPOSE: Genetic and genomic testing can provide valuable information on individuals' risk of chronic diseases, presenting an opportunity for risk-tailored disease screening to improve early detection and health outcomes. The acceptability, uptake and effectiveness of such programmes is dependent on public preferences for the programme features. This study aims to conduct a systematic review of discrete choice experiments assessing preferences for genetic/genomic risk-tailored chronic disease screening. METHODS: PubMed, Embase, EconLit and Cochrane Library were searched in October 2023 for discrete choice experiment studies assessing preferences for genetic or genomic risk-tailored chronic disease screening. Eligible studies were double screened, extracted and synthesised through descriptive statistics and content analysis of themes. Bias was assessed using an existing quality checklist. RESULTS: Twelve studies were included. Most studies focused on cancer screening (n = 10) and explored preferences for testing of rare, high-risk variants (n = 10), largely within a targeted population (e.g. subgroups with family history of disease). Two studies explored preferences for the use of polygenic risk scores (PRS) at a population level. Twenty-six programme attributes were identified, with most significantly impacting preferences. Survival, test accuracy and screening impact were most frequently reported as most important. Depending on the clinical context and programme attributes and levels, estimated uptake of hypothetical programmes varied from no participation to almost full participation (97%). CONCLUSION: The uptake of potential programmes would strongly depend on specific programme features and the disease context. In particular, careful communication of potential survival benefits and likely genetic/genomic test accuracy might encourage uptake of genetic and genomic risk-tailored disease screening programmes. As the majority of the literature focused on high-risk variants and cancer screening, further research is required to understand preferences specific to PRS testing at a population level and targeted genomic testing for different disease contexts.