The European Organisation for Research and Treatment of Cancer Quality of Life Utility-Core 10 Dimensions: Development and Investigation of General Population Utility Norms for Canada, France, Germany, Italy, Poland, and the United Kingdom.

OBJECTIVES: The European Organisation for Research and Treatment of Cancer Quality of Life Utility-Core 10 Dimensions (EORTC QLU-C10D) is a cancer-specific preference-based measure, providing health utilities for use in economic evaluations derived from the widely used health-related quality of life measure, EORTC QLQ-C30. Several EORTC QLU-C10D country-specific value sets are available. This article aimed to provide EORTC QLU-C10D general population utility norms for Canada, France, Germany, Italy, Poland, and the United Kingdom, to aid interpretability of obtained utilities in these countries. METHODS: Data were collected in aforementioned countries via a quota-sampled, cross-sectional online survey (n = 100/age-sex group; N = approximately 1000/country). Participants were asked to complete the EORTC QLQ-C30 and provide sociodemographic data. Country-specific utility norms were calculated using the respective country tariff on the country's EORTC QLQ-C30 data after weighting to achieve population representativeness for age and sex. Norm values are provided as means (SDs) by country, age, and sex groups. Tukey's multiple comparison test investigated mean differences among countries. The impact of country, age, and sex on utility values was investigated with a multiple linear regression model. RESULTS: Country-specific mean utilities range from 0.724 (United Kingdom) to 0.843 (Italy). Country-, sex-, and age-specific mean utilities range from 0.664 for 30- to 39-year-old male Canadians to 0.899 for > 70-year-old male Italians. Utilities were lower in females in 4 of 6 countries, and the impact of age differed among countries. Independent of the impact of age and sex, between-country differences were found (P ≤ .05). CONCLUSION: Results showed a varying impact of age and sex on EORTC QLU-C10D utilities and significant between-country differences. Using national utility norms and utility decrements is recommended.

The FACT-8D, a new cancer-specific utility algorithm based on the Functional Assessment of Cancer Therapies-General (FACT-G): a Canadian valuation study.

INTRODUCTION: Utility instruments are used to assess patients' health-related quality of life for cost-utility analysis (CUA). However, for cancer patients, the dimensions of generic utility instruments may not capture all the information relevant to the impact of cancer. Cancer-specific utilities provide a useful alternative. Under the auspices of the Multi-Attribute Utility in Cancer Consortium, a cancer-specific utility algorithm was derived from the FACT-G. The new FACT-8D contains eight dimensions: pain, fatigue, nausea, sleep, work, support from family/friends, sadness, and worry health will get worse. The aim of the study was to obtain a Canadian value set for the FACT-8D. METHODS: A discrete choice experiment was administered to a Canadian general population online panel, quota sampled by age, sex, and province/territory of residence. Respondents provided responses to 16 choice sets. Each choice set consisted of two health states described by the FACT-8D dimensions plus an attribute representing survival duration. Sample weights were applied and the responses were analyzed using conditional logistic regression, parameterized to fit the quality-adjusted life year framework. The results were converted into utility weights by evaluating the marginal rate of substitution between each level of each FACT-8D dimension with respect to duration. RESULTS: 2228 individuals were recruited. The analysis dataset included n = 1582 individuals, who completed at least one choice set; of which, n = 1501 completed all choice sets. After constraining to ensure monotonicity in the utility function, the largest decrements were for the highest levels of pain (- 0.38), nausea (- 0.30), and problems doing work (- 0.23). The decrements of the remaining dimensions ranged from - 0.08 to - 0.18 for their highest levels. The utility of the worst possible health state was defined as - 0.65, considerably worse than dead. CONCLUSIONS: The largest impacts on utility included three generic dimensions (i.e., pain, support, and work) and nausea, a symptom caused by cancer (e.g., brain tumours, gastrointestinal tumours, malignant bowel obstruction) and by common treatments (e.g., chemotherapy, radiotherapy, opioid analgesics). This may make the FACT-8D more informative for CUA evaluating in many cancer contexts, an assertion that must now be tested empirically in head-to-head comparisons with generic utility measures.

Direct medical costs of young-onset colorectal cancer: a worldwide systematic review.

BACKGROUND: Given the rising incidence of young-onset colorectal cancer (yCRC) among individuals younger than 50 years old, understanding the economic burden of yCRC is required to inform the delivery of healthcare services. Therefore, we conducted a systematic review of studies assessing the direct medical costs of yCRC, and where relevant average-age onset CRC (aCRC). METHODS: We searched MEDLINE, EMBASE, and Web of Science from inception to May 2022 for original, peer-reviewed studies, that reported direct medical costs (e.g., chemotherapy, radiotherapy, outpatient visits, inpatient care, prescription medications) for yCRC and aCRC. We used a modified version of the Consolidated Health Economic Evaluation Reporting Standards checklist to appraise the studies. Costs were inflation-adjusted to 2020 US dollars. RESULTS: We included 14 studies from 10 countries, including the USA, England, France, Korea, Vietnam, China, Italy, Australia, Canada and Japan. Five studies focused on prevalent disease and reported annualized per-capita cost of prevalent yCRC, ranging from $2,263 to $16,801 and $1,412 to $14,997 among yCRC and aCRC cases, respectively. Nine studies estimated the cost of incident disease. Synthesis of per-capita costs incurred 12 months following colorectal cancer diagnosis ranged from $23,368 to $89,945 for yCRC and $19,929 to $67,195 for aCRC. Five studies used multivariable approaches to compare costs associated with yCRC and aCRC, four showed no differences and one suggested greater costs with yCRC. CONCLUSION: Our synthesis of direct medical costs of yCRC across multiple jurisdictions provide relevant information for healthcare decisions, including on-going considerations for expanding CRC screening strategies to younger adults.

The Functional Assessment of Cancer Therapy Eight Dimension (FACT-8D), a Multi-Attribute Utility Instrument Derived From the Cancer-Specific FACT-General (FACT-G) Quality of Life Questionnaire: Development and Australian Value Set.

OBJECTIVES: To develop a cancer-specific multi-attribute utility instrument derived from the Functional Assessment of Cancer Therapy - General (FACT-G) health-related quality of life (HRQL) questionnaire. METHODS: We derived a descriptive system based on a subset of the 27-item FACT-G. Item selection was informed by psychometric analyses of existing FACT-G data (n = 6912) and by patient input (n = 82). We then conducted an online valuation survey, with participants recruited via an Australian general population online panel. A discrete choice experiment (DCE) was used, with attributes being the HRQL dimensions of the descriptive system and survival duration, and 16 choice-pairs per participant. Utility decrements were estimated with conditional logit and mixed logit modeling. RESULTS: Eight HRQL dimensions were included in the descriptive system: pain, fatigue, nausea, sleep, work, social support, sadness, and future health worry; each with 5 levels. Of 1737 panel members who accessed the valuation survey, 1644 (95%) completed 1 or more DCE choice-pairs and were included in analyses. Utility decrements were generally monotonic; within each dimension, poorer HRQL levels generally had larger utility decrements. The largest utility decrements were for the highest levels of pain (-0.40) and nausea (-0.28). The worst health state had a utility of -0.54, considerably worse than dead. CONCLUSIONS: A descriptive system and preference-based scoring approach were developed for the FACT-8D, a new cancer-specific multi-attribute utility instrument derived from the FACT-G. The Australian value set is the first of a series of country-specific value sets planned that can facilitate cost-utility analyses based on items from the FACT-G and related FACIT questionnaires containing FACT-G items.

Assessing how health information needs of individuals with colorectal cancer are met across the care continuum: an international cross-sectional survey.

BACKGROUND: Studies evaluating health information needs in colorectal cancer (CRC) lack specificity in terms of study samples involving patients. We assessed how health information needs of individuals with CRC are met across the care continuum. METHODS: We administered an international, online based survey. Participants were eligible for the study if they: 1) were 18 years of age or older; 2) received a diagnosis of CRC; and 3) were able to complete the online health survey in English, French, Spanish, or Mandarin. We grouped participants according to treatment status. The survey comprised sections: 1) demographic and cancer characteristics; 2) health information needs; and 3) health status and quality of life. We used multivariable regression models to identify factors associated with having health information needs met and evaluated impacts on health-related outcomes. RESULTS: We analyzed survey responses from 1041 participants including 258 who were currently undergoing treatment and 783 who had completed treatment. Findings suggest that information needs regarding CRC treatments were largely met. However, we found unmet information needs regarding psychosocial impacts of CRC. This includes work/employment, mental health, sexual activity, and nutrition and diet. We did not identify significant predictors of having met health information needs, however, among participants undergoing treatment, those with colon cancer were more likely to have met health information needs regarding their treatments as compared to those with rectal cancer (0.125, 95% CI, 0.00 to 0.25, p-value = 0.051). CONCLUSIONS: Our study provides a comprehensive assessment of health information needs among individuals with CRC across the care continuum.

Health information seeking behaviors among individuals with young-onset and average-onset colorectal cancer: an international cross-sectional survey.

PURPOSE: Our objective was to evaluate health information seeking behaviors in yCRC (young onset colorectal cancer, diagnosed ≤ 50 years) and aCRC (average-age onset colorectal cancer, diagnosed ≥ 50 years). METHODS: We administered an international, Internet-based survey to ask individuals diagnosed with CRC how they seek health information, including sources sought and utilization behaviors. We also asked participants their preferences for digital technologies. RESULTS: In total 1125 individuals including 455 with yCRC (68.6% female) and 670 with aCRC (53.5% female) participated. There were similar frequencies of seeking among participants with yCRC and aCRC across all sources except for the Internet. Healthcare providers were the most frequently sought source with similar proportions of participants indicating their response as "always" (yCRC, 43.7% vs. aCRC, 43.2%, p = 0.91). We also observed differences in utilization behaviors with more participants with yCRC using the Internet first when seeking information (yCRC 31.6% vs. aCRC 24.3%, p < 0.05) and those with aCRC seeking healthcare providers first (aCRC 61.9% vs. yCRC 45.5%, p < 0.05). With respect to digital technologies, we found a higher proportion of yCRC participants owning smartphones and indicating use of apps related to health/wellness and cancer. CONCLUSION: Individuals with yCRC and aCRC similarly sought the same resources for health information on CRC. However, they differed with respect to utilization behaviors, particularly a greater reliance on digital technologies among individuals with yCRC. These have implications for informing age-specific resources and information to support patients.

Public perspectives on disinvestments in drug funding: results from a Canadian deliberative public engagement event on cancer drugs.

BACKGROUND: Decisions relating to the funding of new drugs are becoming increasingly challenging due to a combination of aging populations, rapidly increasing list prices, and greater numbers of drug-indication pairs being brought to market. This is especially true in cancer, where rapid list price inflation is coupled with steeply rising numbers of incident cancer cases. Within a publicly funded health care system, there is increasing recognition that resource allocation decisions should consider the reassessment of, and potential disinvestment from, currently funded interventions alongside new investments. Public input into the decision-making process can help legitimize the outcomes and ensure priority-setting processes are aligned with public priorities. METHODS: In September 2014, a public deliberation event was held in Vancouver, Canada, to obtain public input on the topic of cancer drug funding. Twenty-four members of the general public were tasked with making collective recommendations for policy-makers about the principles that should guide funding decisions for cancer drugs in the province of British Columbia. Deliberative questions and decision aids were used to elicit individuals' willingness to make trade-offs between expenditures and health outcomes. RESULTS: Participants discussed the implications of disinvestment decisions from cancer drugs in terms of its impact on patient choice, fairness and quality of life. Their discussions indicate that in order for a decision to disinvest from currently-funded cancer drugs to be acceptable, it must align with three main principles: the decision must be accompanied by significant gains, described both in terms of cost savings and opportunities to re-invest elsewhere in the health care system; those who are currently prescribed a cancer drug should be allowed to continue their course of treatment (referred to as a continuance clause, or "grandfathering" approach); and it must consider how access to care for specialized populations is impacted. CONCLUSIONS: The results from this deliberation event provide insight into what is acceptable to British Columbians with respect to disinvestment decisions for cancer drugs. These recommendations can be considered within wider health system decision-making frameworks for funding decisions relating to all drugs, as well as for cancer drugs.

Trade-offs, fairness, and funding for cancer drugs: key findings from a deliberative public engagement event in British Columbia, Canada.

BACKGROUND: Spending on cancer drugs has risen dramatically in recent years compared to other areas of health care, due in part to higher prices associated with newly approved drugs and increased demand for these drugs. Addressing this situation requires making difficult trade-offs between cost, harms, and ability to benefit when using public resources, making it important for policy makers to have input from many people affected by the issue, including citizens. METHODS: In September 2014, a deliberative public engagement event was conducted in Vancouver, British Columbia (BC), on the topic of priority setting and costly cancer drugs. The aim of the study was to gain citizens' input on the topic and have them generate recommendations that could inform cancer drug funding decisions in BC. A market research company was engaged to recruit members of the BC general public to deliberate over two weekends (four days) on how best to allocate resources for expensive cancer treatments. Participants were stratified based on the 2006 census data for BC. Participants were asked to discuss disinvestment, intravenous versus oral chemotherapy delivery, and decision governance. All sessions were audio recorded and transcribed. Transcripts were analyzed using NVivo 11 software. RESULTS: Twenty-four individuals participated in the event and generated 30 recommendations. Participants accepted the principle of resource scarcity and the need of governments to make difficult trade-offs when allocating health-care resources. They supported the view that cost-benefit thresholds must be set for high-cost drugs. They also expected reasonable health benefits in return for large expenditures, and supported the view that some drugs do not merit funding. Participants also wanted drug funding decisions to be made in a non-partisan and transparent way. CONCLUSION: The recommendations from the Vancouver deliberation can provide guidance to policy makers in BC and may be useful in challenging pricing by pharmaceutical companies.

Quality of Life and Asthma Symptom Control: Room for Improvement in Care and Measurement.

BACKGROUND: The recent Global Initiative for Asthma management strategy recommends achieving symptom control and minimizing the future risk of poor outcomes as priorities for asthma management. OBJECTIVE: The objective was to quantify the association between symptom control and health-related quality of life in asthma. METHODS: In a prospectively recruited random sample of adults with asthma, we ascertained symptom control and measured health-related quality of life using a generic (EuroQol five-dimensional questionnaire [EQ-5D]) and a disease-specific (Asthma Quality of Life Questionnaire) instrument, to estimate EQ-5D and five-dimensional Asthma Quality of Life Questionnaire (AQL-5D) utilities, respectively. We measured the adjusted difference in utilities across symptom control levels and calculated the loss of predictive efficiency due to aggregating multiple symptoms into one symptom control variable. RESULTS: The final sample included 958 observations from 494 individuals (mean age at baseline 52.2 ± 14.5 years; 67.0% women). Asthma was symptomatically controlled, partially controlled, and uncontrolled in 269 (28.1%), 367 (38.3%), and 322 (33.6%) observations, respectively. A person with symptomatically uncontrolled asthma would gain 0.0512 (95% CI 0.0339-0.0686) in EQ-5D or 0.0802 (95% CI 0.0693-0.0910) in AQL-5D utilities by achieving symptom control. The loss of predictive efficiency was 55.4% and 27.6% for EQ-5D and AQL-5D utilities, respectively. CONCLUSIONS: Asthma symptom control status corresponds well with both generic and disease-specific quality-of-life measures. The trade-off, however, between ease of use and predictive power should be reconsidered in developing simplified measures of control. Our results have direct relevance in informing decision-analytic models of asthma and deducing the effect of interventions on quality of life through their impact on asthma control.

Direct Medical Spending on Young and Average-Age Onset Colorectal Cancer before and after Diagnosis: a Population-Based Costing Study.

BACKGROUND: Despite a better understanding of the increasing incidence of young-onset colorectal cancer (yCRC; age at diagnosis <50 years), little is known about its economic burden. Therefore, we estimated direct medical spending on yCRC before and after diagnosis. METHODS: We used linked administrative health databases in British Columbia, Canada, to create a study population of yCRC and average-age onset colorectal cancer (aCRC; age at diagnosis ≥50 years) cases, along with cancer-free controls. Over the 1-year period preceding a colorectal cancer diagnosis, we estimated direct medical spending on hospital visits, healthcare practitioners, and prescription medications. After diagnosis, we calculated cost attributable to yCRC and aCRC, which additionally included the cost of cancer treatments (e.g., chemotherapy and radiotherapy) across phases of care. RESULTS: We included 1,058 yCRC (45.4% females; age at diagnosis 42.4 ± 6.2 years) and 12,619 aCRC (44.8% females; age at diagnosis of 68.1 ± 9.2 years) cases. Direct medical spending on the average yCRC and aCRC case during the year before diagnosis was $6,711 and $8,056, respectively. After diagnosis, the overall average annualized cost attributable to yCRC significantly differed in comparison with aCRC for the initial ($50,216 vs. $37,842; P < 0.001), continuing ($8,361 vs. $5,014; P < 0.001), and end-of-life cancer phase ($86,125 vs. $61,512; P < 0.001) but not end-of-life non-cancer phase ($77,273 vs. $23,316; P = 0.372). CONCLUSIONS: Reported cost estimates may be used as inputs for future economic evaluations pertaining to yCRC. IMPACT: We provided comprehensive cost estimates for healthcare spending on young-onset colorectal cancer.

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.

Mapping the FACT-G cancer-specific quality of life instrument to the EQ-5D and SF-6D.

OBJECTIVE: To help facilitate economic evaluations of oncology treatments, we mapped responses on cancer-specific instrument to generic preference-based measures. METHODS: Cancer patients (n = 367) completed one cancer-specific instrument, the FACT-G, and two preference-based measures, the EQ-5D and SF-6D. Responses were randomly divided to form development (n = 184) and cross-validation (n = 183) samples. Relationships between the instruments were estimated using ordinary least squares (OLS), generalized linear models (GLM), and censored least absolute deviations (CLAD) regression approaches. The performance of each model was assessed in terms of how well the responses to the cancer-specific instrument predicted EQ-5D and SF-6D utilities using mean absolute error (MAE) and root mean squared error (RMSE). RESULTS: Physical, functional, and emotional well-being domain scores of the FACT-G best explained the EQ-5D and SF-6D. In terms of accuracy of prediction as measured in RMSE, the CLAD model performed best for the EQ-5D (RMSE = 0.095) whereas the GLM model performed best for the SF-6D (RMSE = 0.061). The GLM predicted SF-6D scores matched the observed values more closely than the CLAD and OLS. CONCLUSION: Our results demonstrate that the estimation of both EQ-5D and SF-6D utility indices using the FACT-G responses can be achieved. The CLAD model for the EQ-5D and the GLM model for the SF-6D are recommended. Thus, it is possible to estimate quality-adjusted life years for economic evaluation from studies where only cancer-specific instrument have been administered.

Exploring colposcopists' attitudes towards use of HPV testing as a primary screening tool for cervical cancer in British Columbia.

OBJECTIVE: To examine colposcopists' attitudes regarding human papillomavirus (HPV) DNA testing as a primary screening tool for cervical cancer. METHODS: Questionnaires administered in 2010 and 2011 during workshops in British Columbia elicited colposcopists' attitudes using a series of five-point Likert-style scales (strongly disagree to strongly agree) and binary (yes/no) response questions. The frequency of "agree" or "strongly agree" was used to characterize attitudes. Regression analyses examined statistically significant changes in attitudes after the 2010 workshop. RESULTS: Responses generally indicated positive changes in attitudes toward HPV testing. Statistically significant changes after the 2010 workshop were observed for the items relating to strong agreement that HPV is a necessary cause of cervical cancer (39% increase; P < 0.001) and the likelihood of openly advocating for HPV testing (19% increase; P < 0.04). In 2010, 40% of colposcopists stated that four years between HPV tests is too long, and in 2011, 53% did so. CONCLUSION: Colposcopists are viewed as opinion leaders and will have a critical role in implementing HPV testing in BC; our study obtained responses from 73% (2010) and 84% (2011) of BC-registered colposcopists. Colposcopists were in favour of HPV testing for primary screening for cervical cancer but did not support an extended interval for HPV testing, which suggests future knowledge translation workshops are crucial. We found that knowledge translation workshops can be an effective approach for translating evidence on screening and screening practices.

Objectif : Examiner les attitudes des colposcopistes à l'égard du dépistage de l'ADN du virus du papillome humain (VPH) à titre d'outil principal de dépistage du cancer du col utérin. Méthodes : Des questionnaires administrés en 2010 et en 2011 dans le cadre d'ateliers offerts en Colombie-Britannique se sont penchés sur les attitudes des colposcopistes au moyen de séries d'échelles en cinq points de type Likert (de « fortement en désaccord ¼ à « fortement en accord ¼) et de questions à réponse binaire (oui / non). La fréquence des réponses « en accord ¼ ou « fortement en accord ¼ a été utilisée pour caractériser les attitudes. Des analyses de régression ont examiné les modifications significatives sur le plan statistique en ce qui concerne les attitudes à la suite de l'atelier de 2010. Résultats : Les réponses ont généralement indiqué des modifications positives en ce qui concerne les attitudes envers le dépistage du VPH. À la suite de l'atelier de 2010, des modifications significatives sur le plan statistique ont été constatées pour ce qui est des articles liés au fait d'être fortement en accord avec la déclaration voulant que le VPH constitue une cause nécessaire du cancer du col utérin (hausse de 39 %; P < 0,001), ainsi que pour ce qui est de la probabilité de plaider ouvertement en faveur du dépistage du VPH (hausse de 19 %; P < 0,04). En 2010, 40 % des colposcopistes ont déclaré qu'un délai de quatre ans entre les tests de dépistage du VPH était trop long; en 2011, 53 % ont fait une telle déclaration. Conclusion : Les colposcopistes sont perçus comme étant des leaders d'opinion; ils joueront donc un rôle crucial dans la mise en œuvre du dépistage du VPH en Colombie-Britannique. Notre étude a obtenu des réponses de la part de 73 % (2010) et de 84 % (2011) des colposcopistes inscrits en C.-B. Les colposcopistes étaient en faveur de l'utilisation du dépistage du VPH aux fins du dépistage primaire du cancer du col utérin, mais ne soutenaient pas la mise en œuvre d'un intervalle prolongé dans le cadre du dépistage du VPH, ce qui semble indiquer que la tenue de futurs ateliers de transfert des connaissances s'avère cruciale. Nous avons constaté que les ateliers de transfert des connaissances peuvent constituer une approche efficace pour assurer l'application des résultats de recherche au dépistage et aux pratiques connexes.

Patient Preferences in Metastatic Breast Cancer Care: A Scoping Review.

People with metastatic breast cancer (MBC) have diverse medical, physical, and psychosocial needs that require multidimensional care. Understanding patient preferences is crucial to tailor treatments, services, and foster patient-centered care. A scoping review was performed to summarize the current evidence on the preferences of people with MBC regarding their care to identify knowledge gaps and key areas for future research. The Embase, MEDLINE, CINAHL and PsycInfo databases were searched. Twenty studies enrolling 3354 patients met the study eligibility criteria. Thirteen quantitative studies, four mixed methods studies, and three qualitative studies were included. Seven studies captured healthcare provider perspectives; thirteen studies evaluated patient preferences relating specifically to cancer treatments; three studies evaluated preferences relating to supportive care; and four studies evaluated communication and decision-making preferences. The current literature evaluating MBC patient preferences is heterogeneous with a focus on cancer treatments. Future research should explore patient preferences relating to multidisciplinary, multi-modal care that aims to improve quality of life. Understanding MBC patient preferences regarding their comprehensive care can help tailor healthcare delivery, enhance the patient experience, and improve outcomes.

How to present work productivity loss results from clinical trials for patients and caregivers? A mixed methods approach.

OBJECTIVES: From the perspectives of patients and caregivers, the objectives were: identifying which result presentations, describing work productivity loss (WPL) outcomes, are most understandable; measuring which presentations are important to report; and investigating which WPL outcomes are viewed as important alongside clinical trials results. METHODS: We used a four phased, sequential mixed methods design, guided by patient-oriented research engaging one patient partner. We conducted think-aloud interviews, in British Columbia/Canada, to review WPL results and our survey measuring the understandability and importance of the results, and importance of each WPL outcome. We surveyed a sample representing working Canadians. The findings were summarized and analyzed using linear and logistic regression. We conducted sub-group analyses; one was gender based. All regressions were conducted using generalized estimating equations. RESULTS: In our qualitative phases, 20 patients and caregivers were interviewed. Participants recommended for the results to be brief, simple, and represented visually. Then, 118 patients and 120 caregivers were surveyed. The results presented in days or cost yielded the highest understandability and importance to report. All WPL outcomes were identified as important to somewhat important to report by most. The associations indicated that the more understandable the result presentation was, the more likely it was to be rated as important. Age was the only factor significantly associated with selecting days or cost as the most important result. CONCLUSION: Presenting WPL results in days and cost, using lay terms and visual supports, were viewed as easiest to understand and most important to report in clinical trials by patients and caregivers. Our findings are supportive of clinical trials standardizing the measurement of WPL to include all of its outcomes (absenteeism, presenteeism, employment status changes and total work productivity loss), in addition to tools assessing the comprehensiveness of WPL results to be provided to patients and caregivers.

Reproductive Health Outcomes among Adolescent and Young Adult Cancer Patients: A Systematic Review and Meta-Analysis.

BACKGROUND: This systematic review and meta-analysis (SRMA) aimed to synthesize the current literature on the impacts of adolescent and young adult (AYA, ages 15-39 years) cancer on reproductive health outcomes. METHODS: EMBASE and Medline were searched from 1 January 2000 to 26 January 2022 for observational studies that included individuals with AYA cancer and controls which evaluated reproductive health outcomes. We used random effects models and 95% confidence intervals to obtain pooled measures of associations between AYA cancer, cancer treatment, and reproductive health outcomes. RESULTS: The search identified 8625 articles; 21 were included. 62 reproductive outcomes were assessed and classified according to a sex-based framework as fetal/neonatal (n = 26), maternal (n = 11), fetal/neonatal-maternal (n = 23), and maternal-paternal (n = 2). Meta-analyses of crude estimates showed significant associations between AYA cancer and outcomes including preterm birth (pooled odds ratio [pOR] 1.31; 95% CI: 1.22, 1.42), gestational diabetes (pOR 1.43; 95% CI: 1.03, 1.99), and fertility treatment (pOR 2.66; 95% CI 1.71, 4.11). We also found higher odds of preterm birth (pOR 1.65; 95% CI: 1.21, 2.26) and low APGAR score at birth (pOR 2.03; 95% CI: 1.32, 3.13) among AYA cancer patients who received radiation compared to controls. CONCLUSIONS: Our SRMA quantified impacts of AYA cancers and treatments on several reproductive health outcomes.

Sexual health outcomes among adolescent and young adult cancer patients: a systematic review and meta-analysis.

BACKGROUND: Sexual health outcomes (SHO), which entail the physical, emotional, mental, and social impacts, are an important consideration for adolescent and young adults (AYA, ages 15-39) affected by cancer. The objective of this systematic review and meta-analysis is to summarize the current literature and evaluate AYA cancer impact on SHO. METHODS: EMBASE and MEDLINE were searched from January 1, 2000 to September 28, 2022 to identify epidemiologic studies that used an analytic observational design, included individuals with AYA cancer and non-cancer control participants, and evaluated SHO. Odds ratios and prevalence ratios were calculated; random effects models were used to obtain pooled measures where possible. RESULTS: Of 2621 articles, 8 were included that investigated 23 SHO in 9038 AYA cancer patients. Based on the sexual response cycle, outcomes were categorized as those occurring among males (desire = 1, arousal = 1, orgasm = 4, other = 3) and females (desire = 2, arousal = 1, orgasm = 2, pain = 6, other = 3). It was feasible to conduct meta-analysis for 3 female SHO and 5 male SHO. There were associations between AYA cancer and 3 SHO: vaginal dryness (pooled odds ratio = 3.94; 95% confidence interval (CI) = 2.02 to 7.70), ejaculatory dysfunction (pooled odds ratio = 3.66; 95% CI = 2.20 to 6.08), and testosterone level (pooled mean difference = -2.56 nmol/liter; 95% CI = -3.46 to -1.66; P = .00001). CONCLUSION: This study found increased ejaculatory dysfunction and reduced testosterone levels in male AYA cancer patients and increased vaginal dryness in female AYA cancer patients, highlighting the need for sexual health resources in this population.

Using mixed methods research to explore the effect of an adaptation exercise on general population valuations of health states.

PURPOSE: To understand the effect of an adaptation exercise (AE) on general population values for rheumatoid arthritis (RA) states. METHODS: A sequential mixed methods design was employed: an analysis of a dataset to develop RA states for valuing in later phases of the study; a qualitative interview study with members of the general population to identify how an AE affected valuing of the RA states and to help design a questionnaire for the final phase; and a quantitative quasi-experimental study to identify factors that influence change in values after being informed about adaptation. RESULTS: Three RA states were developed using Rasch and cluster analyses. Participants in the qualitative phase identified a range of ways in which information about adaptation affected their values. For example, they realized they could adapt to RA because their family and friends who had RA, or similar conditions, could cope. A 25-item questionnaire was developed and used during the final phase to identify that younger and healthier individuals were more likely to increase their values after being informed about disease adaptation. The qualitative findings were revisited and found to support the quantitative results. CONCLUSIONS: This approach facilitated understanding of whether and how an AE affected valuing of health states. Each phase affected the next phase of the study, leading to the conclusion that general population respondents who have little experience of disease will likely increase their health state values after being informed about adaptation because they understand that they could cope with the disease.

Qualitative Research Informing a Preference Study on Selecting Cannabis for Cancer Survivor Symptom Management: Design of a Discrete Choice Experiment.

INTRODUCTION: The legalization of recreational cannabis use can enable cancer survivors to manage aspects of their care with cannabinoids without medical authorization or stigmatization. However, the absence of medical guidance-from the scientific literature or the healthcare system-makes it difficult for survivors to reach informed decisions about their care. OBJECTIVE: This article outlines the qualitative research undertaken to design a discrete choice experiment (DCE) aimed at understanding Canadian cancer survivors' preferences for managing their cancer symptoms with cannabis in this complex socio-medical context. METHODS: In this study, we drew on previously published qualitative research (a literature review and interviews with cancer survivors) and the theory of planned behavior, holding weekly team meetings to review the qualitative data and identify initial attributes associated with medicinal cannabis consumption to inform the DCE design. The initial attributes were further assessed to determine whether they were sensitive to the Canadian context, modifiable to produce levels and trade-offs, and amenable to policy intervention, in order to form the DCE choice sets. The choice sets were tested via think-aloud exercises with members of the general population and included debriefing interviews. Think-aloud participants were recruited from patient groups and previous studies. RESULTS: Based on our review of the interview study, we identified the following attributes associated with selecting medicinal cannabis: effectiveness; chance of side effects; support from family, friends, and/or physicians; cost; and availability. Ability to perform everyday activities was added and monthly out-of-pocket cost was refined to render the DCE realistic to cancer survivors in the Canadian context. Revisions to the DCE instructions, terminology, and cost levels were made based on results from the think-aloud exercises (n = 10). CONCLUSIONS: This qualitative study outlines the preference evidence collected regarding Canadian cancer survivors' decisions to manage their symptoms with cannabis to inform a DCE quantitative survey. It contributes to transparent reporting of qualitative work in DCE development and to understanding cancer survivors' preferences regarding medicinal cannabis consumption under legalization.