Exploring the Use of Pictorial Approaches in the Development of Paediatric Patient-Reported Outcome Instruments: A Systematic Review.

INTRODUCTION: Children may find self-reporting health-related quality of life (HRQoL) using patient-reported outcome measures (PROMs) presented in text-based formats difficult, particularly younger children and children with developmental delays or chronic illness. In such cases, pictorial PROMs (where pictorial representations are used alongside or to replace text) may offer a valid alternative. AIM: This systematic literature review focused on identifying and describing paediatric PROMs that incorporate pictorial approaches, providing children with more effective means to express their HRQoL. METHODS: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Seven electronic databases were searched from inception to 1 March 2022. There were no country restrictions applied to the search; all English-language studies were considered for inclusion in the review. Characteristics and development methods of the identified pictorial PROMs were evaluated against context-specific good practice guidelines published by The Professional Society for Health Economics and Outcomes Research (ISPOR). RESULTS: A total of 22 paediatric pictorial PROMs, comprising 28 unique versions, were identified. These PROMs were predominantly developed in the USA and the UK, targeting children aged 3-18 years. Likert scales with pictorial anchors, particularly happy-sad faces, were commonly used for response options, appearing in 15 (54%) of the PROMs. Various graphic methods, such as happy-sad faces, cartoons, and thermometers, were adapted to specific content domains. These PROMs covered a wide range of domains, including physical and emotional health and social functioning. Emphasis was placed on content validity, including active child participation in developing pictorial elements. Notably, children's participation was sought during the development of the pictorial elements for 13 (46%) of the PROMs. Various development methods were employed, with 43% of paediatric PROMs using literature reviews, 43% using focus groups, and 32% involving expert consultation. Interviews emerged as the primary method, being employed in 61% of the studies. Additionally, three measures specifically addressed cross-cultural considerations. CONCLUSION: Paediatric pictorial PROMs offer child-friendly tools for assessing HRQoL for application with children who find reading and understanding text-based PROMs challenging. There is some evidence that pictorial PROMs facilitate self-report in this population and improve measurement properties compared to text-only PROMs. Further research is needed to develop, validate, and test paediatric pictorial PROMs, with an emphasis on including children from the inception in the co-design process.

Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study.

OBJECTIVES: No guidance currently exists as to the cognition threshold beyond which self-reported quality of life for older people with cognitive impairment and dementia is unreliable. METHODS: Older aged care residents (≥ 65 years) were randomly assigned to complete the EQ-5D-5L in computer-based (eye movements were tracked) or hard copy (participants were encouraged to 'think aloud') format. Cognition was assessed using the Mini-Mental State Examination (MMSE). Think aloud and eye tracking data were analysed by two raters, blinded to MMSE scores. At the participant level, predefined criteria were used to assign traffic light grades (green, amber, red). These grades indicate the extent to which extracted data elements provided evidence of self-report reliability. The MMSE-defined cognition threshold was determined following review of the distributions of assigned traffic light grades. RESULTS: Eighty-one residents participated and provided complete data (38 eye tracking, 43 think aloud). In the think aloud cohort, all participants with an MMSE score ≤ 23 (n = 10) received an amber or red grade, while 64% of participants with an MMSE score ≥ 24 (21 of 33) received green grades. In the eye tracking cohort, 68% of participants with an MMSE score ≥ 24 (15 of 22) received green grades. Of the 16 eye tracking participants with an MMSE score ≤ 23, 14 (88%) received an amber or red grade. CONCLUSIONS: Most older residents with an MMSE score ≥ 24 have sufficient cognitive capacity to self-complete the EQ-5D-5L. More research is needed to better understand self-completion reliability for other quality-of-life instruments in cognitively impaired populations.

Quality of life of the Canadian population using the VR-12: population norms for health utility values, summary component scores and domain scores.

OBJECTIVES: To estimate Canadian population norms (health utility values, summary component scores and domain scores) for the VR-12. METHODS: English and French speaking Canadians aged 18 and older completed an online survey that included sociodemographic questions and standardized health status instruments, including the VR-12. Responses to the VR-12 were summarized as: (i) a health utility value; (ii) mental and physical component summary scores (MCS and PCS, respectively), and (iii) eight domain scores. Norms were calculated for the full sample and by gender, age group, and province/territory (univariate), and for several multivariate stratifications (e.g., age group and gender). Results were summarized using descriptive statistics, including number of respondents, mean and standard deviation (SD), median and percentiles (25th and 75th), and minimum and maximum. RESULTS: A total of 6761 people who clicked on the survey link completed the survey (83.4% completion rate), of whom 6741 (99.7%) were included in the analysis. The mean health utility score was 0.698 (SD = 0.216). Mean health utility scores tended to be higher in older age groups, ranging from 0.661 (SD = 0.214) in those aged 18-29 to 0.728 (SD = 0.310) in those aged 80+. Average MCS scores were higher in older age groups, while PCS scores were lower. Females consistently reported lower mean health utility values, summary component scores and domain scores compared with males. CONCLUSIONS: This is the first study to present Canadian norms for the VR-12. Health utility norms can serve as a valuable input for Canadian economic models, while summary component and domain norms can help interpret routinely-collected data.

Sensitivity to change of generic preference-based instruments (EQ-5D-3L, EQ-5D-5L, and HUI3) in the context of treatment for people with prescription-type opioid use disorder in Canada.

PURPOSE: Using data from a randomized controlled trial for treatment of prescription-type opioid use disorder in Canada, this study examines sensitivity to change in three preference-based instruments [EQ-5D-3L, EQ-5D-5L, and the Health Utilities Index Mark 3 (HUI3)] and explores an oft-overlooked consideration when working with contemporaneous responses for similar questions-data quality. METHODS: Analyses focused on the relative abilities of three instruments to capture change in health status. Distributional methods were used to categorize individuals as 'improved' or 'not improved' for eight anchors (seven clinical, one generic). Sensitivity to change was assessed using area under the ROC (receiver operating characteristics) curve (AUC) analysis and comparisons of mean change scores for three time periods. A 'strict' data quality criteria, defined a priori, was applied. Analyses were replicated using 'soft' and 'no' criteria. RESULTS: Data from 160 individuals were used in the analysis; 30% had at least one data quality violation at baseline. Despite mean index scores being significantly lower for the HUI3 compared with EQ-5D instruments at each time point, the magnitudes of change scores were similar. No instrument demonstrated superior sensitivity to change. While six of the 10 highest AUC estimates were for the HUI3, 'moderate' classifications of discriminative ability were identified in 12 (of 22) analyses for each EQ-5D instrument, compared with eight for the HUI3. CONCLUSION: Negligible differences were observed between the EQ-5D-3L, EQ-5D-5L, and HUI3 regarding the ability to measure change. The prevalence of data quality violations-which differed by ethnicity-requires further investigation.

Cost-effectiveness of flexible take-home buprenorphine-naloxone versus methadone for treatment of prescription-type opioid use disorder.

BACKGROUND: Our objective was to examine the cost-effectiveness of flexible take-home buprenorphine-naloxone (BNX) versus methadone alongside the OPTIMA trial in Canada. METHODS: The OPTIMA study was a pragmatic, open-label, noninferiority, two-arm randomized controlled trial, to assess the comparative effectiveness of flexible take-home BNX vs. methadone in routine clinical care for individuals with prescription-type opioid use disorder. We evaluated cost-effectiveness using a semi-Markov cohort model. Probabilities of overdose were calibrated, accounting for fentanyl prevalence and other overdose risk factors such as naloxone availability. We considered health sector and societal cost perspectives, including costs (2020 CAD) for treatment, health resource use, criminal activity, and health state-specific preference weights as outcomes to calculate incremental cost-effectiveness ratios. Six-month and lifetime (3% annual discount rate) time-horizons were explored. RESULTS: Over a lifetime time horizon, individuals accumulated -0.144 [CI: -0.302, -0.025] incremental quality-adjusted life years (QALYs) in BNX compared with methadone. Incremental costs were -$2047 [CI: -$39,197, $24,250] from a societal perspective, and -$4549 [CI: -$6332, -$3001] from a health sector perspective. Over a six-month time-horizon, individuals accumulated 0.002 [credible interval (CI): -0.011, 0.016] incremental QALYs in BNX compared with methadone. Incremental costs were -$307 [CI: -$10,385, $8466] from a societal perspective and -$1111 [CI: -$1517, -$631] from a health sector perspective. BNX was dominated (costlier, less effective) in 49.7% of simulations when adopting a societal perspective over a lifetime time horizon. CONCLUSIONS: Flexible take-home BNX was not cost-effective versus methadone over a lifetime time horizon, resulting from better treatment retention in methadone compared to BNX.

What is measured by the composite, single-item pain/discomfort dimension of the EQ-5D-5L? An exploratory analysis.

PURPOSE: This study examines the EQ-5D-5L pain/discomfort dimension by drawing comparisons with five other pain and discomfort items (pain severity, discomfort severity, pain frequency, discomfort frequency and pain interference) collected in the Australian psychometric study for the EQ Health and Wellbeing instrument. METHODS: Participants, recruited via a market research company, completed an online survey. Methods of analyses included the assessment of descriptive statistics, variation in reporting patterns using chi-square tests and cross-tabulations, correlation analyses, ordered univariate logistic regression, and discriminatory power analyses (Shannon index (H') and Shannon Evenness index (J')). RESULTS: Survey data from 514 participants were used. Compared with EQ-5D-5L pain/discomfort, there was a higher proportion of respondents reporting some level of impairment on at least one of the pain severity and discomfort severity items (74% versus 81%). Correlation with EQ-5D-5L pain/discomfort was strongest for pain severity (r = 0.83) and weakest for discomfort frequency (r = 0.41); the same inferences were drawn for predictive ability. Adding any additional pain or discomfort items to the EQ-5D-5L increased the absolute informativity (H') but not the relative informativity (J'). When replacing EQ-5D-5L pain/discomfort with separate pain and/or discomfort items - i.e., adding items to a modified 'EQ-4D-5L'-absolute informativity increased, while relative informativity increased only when pain interference and frequency-related items (independently or in combination) were added. CONCLUSION: The EQ-5D-5L pain/discomfort dimension captures aspects of pain more than aspects of discomfort. Potential reasons include the absence of descriptors or because pain is mentioned first in the composite item.

Estimation of a Canadian preference-based scoring algorithm for the Veterans RAND 12-Item Health Survey: a population survey using a discrete-choice experiment.

BACKGROUND: The Veterans RAND 12-Item Health Survey (VR-12) is a generic patient-reported outcome measure derived from the widely used 36- and 12-item Short Form Health Surveys. We aimed to estimate a Canadian preference-based scoring algorithm for the VR-12, enabling the derivation of health utility values for generating quality-adjusted life years (QALYs). METHODS: We conducted a discrete-choice experiment in a sample of the Canadian population in January and February 2019. Participants - recruited from a consumer research panel - completed an online survey, in English or French, that included 11 discrete-choice questions, each comprising 2 health profiles. We defined the health profiles using 8 VR-12 items and a duration attribute. Using conditional logit regressions, where each level of the respective VR-12 items was interacted with duration, we applied the coefficients to estimate health utility values interpretable on a scale of 0 (dead) to 1 (full health). Negative values reflect states considered worse than dead. RESULTS: A total of 3380 individuals completed the survey. Of these, 1688 (49.9%) were females, and 3101 (91.7%) completed the English version of the survey. Across all models, "feel downhearted and blue all of the time" and "pain interferes with your normal work extremely" were associated with the largest decrements in health utility. Excluding the 685 respondents (20.3%) who provided inconsistent responses had a negligible effect on the results. The recommended model, weighted to match population demographics, had health utility values ranging from -0.589 to 1.000. INTERPRETATION: Health utility values that reflect the preferences of the Canadian population can now be derived from responses to the VR-12. These values can be used to generate QALYs in future analyses.

Evaluating the Impact of Orthostatic Syncope and Presyncope on Quality of Life: A Systematic Review and Meta-Analysis.

PURPOSE: Syncope (transient loss of consciousness and postural tone) and presyncope are common manifestations of autonomic dysfunction that are usually triggered by orthostasis. The global impact of syncope on quality of life (QoL) is unclear. In this systematic review, we report evidence on the impact of syncope and presyncope on QoL and QoL domains, identify key factors influencing QoL in patients with syncopal disorders, and combine available data to compare QoL between syncopal disorders and to population normative data. METHODS: A comprehensive literature search of academic databases (MEDLINE (PubMed), Web of Science, CINAHL, PsycINFO, and Embase) was conducted (February 2021) to identify peer-reviewed publications that evaluated the impact of vasovagal syncope (VVS), postural orthostatic tachycardia syndrome (POTS), or orthostatic hypotension (OH) on QoL. Two team members independently screened records for inclusion and extracted data relevant to the study objectives. RESULTS: From 12,258 unique records identified by the search, 36 studies met the inclusion criteria (VVS: n = 20; POTS: n = 13; VVS and POTS: n = 1; OH: n = 2); 12 distinct QoL instruments were used. Comparisons of QoL scores between patients with syncope/presyncope and a control group were performed in 16 studies; significant QoL impairments in patients with syncope/presyncope were observed in all studies. Increased syncopal event frequency, increased autonomic symptom severity, and the presence of mental health disorders and/or comorbidities were associated with lower QoL scores. CONCLUSION: This review synthesizes the negative impact of syncope/presyncope on QoL and identifies research priorities to reduce the burden of these debilitating disorders and improve patient QoL.

Assessment of an Interactive Digital Health-Based Self-management Program to Reduce Hospitalizations Among Patients With Multiple Chronic Diseases: A Randomized Clinical Trial.

Importance: Digital health programs may have the potential to prevent hospitalizations among patients with chronic diseases by supporting patient self-management, symptom monitoring, and coordinated care. Objective: To compare the effect of an internet-based self-management and symptom monitoring program targeted to patients with 2 or more chronic diseases (internet chronic disease management [CDM]) with usual care on hospitalizations over a 2-year period. Design, Setting, and Participants: This single-blinded randomized clinical trial included patients with multiple chronic diseases from 71 primary care clinics in small urban and rural areas throughout British Columbia, Canada. Recruitment occurred between October 1, 2011, and March 23, 2015. A volunteer sample of 456 patients was screened for eligibility. Inclusion criteria included daily internet access, age older than 19 years, fluency in English, and the presence of 2 or more of the following 5 conditions: diabetes, heart failure, ischemic heart disease, chronic kidney disease, or chronic obstructive pulmonary disease. A total of 230 patients consented to participate and were randomized to receive either the internet CDM intervention (n = 117) or usual care (n = 113). One participant in the internet CDM group withdrew from the study after randomization, resulting in 229 participants for whom data on the primary outcome were available. Interventions: Internet-based self-management program using telephone nursing supports and integration within primary care compared with usual care over a 2-year period. Main Outcomes and Measures: The primary outcome was all-cause hospitalizations at 2 years. Secondary outcomes included hospital length of stay, quality of life, self-management, and social support. Additional outcomes included the number of participants with at least 1 hospitalization, the number of participants who experienced a composite outcome of all-cause hospitalization or death, the time to first hospitalization, and the number of in-hospital days. Results: Among 229 participants included in the analysis, the mean (SD) age was 70.5 (9.1) years, and 141 participants (61.6%) were male; data on race and ethnicity were not collected because there was no planned analysis of these variables. The internet CDM group had 25 fewer hospitalizations compared with the usual care group (56 hospitalizations vs 81 hospitalizations, respectively [30.9% reduction]; relative risk [RR], 0.68; 95% CI, 0.43-1.10; P = .12). The intervention group also had 229 fewer in-hospital days compared with the usual care group (282 days vs 511 days, respectively; RR, 0.52; 95% CI, 0.24-1.10; P = .09). Components of self-management and social support improved in the intervention group. Fewer participants in the internet CDM vs usual care group had at least 1 hospitalization (32 of 116 individuals [27.6%] vs 46 of 113 individuals [40.7%]; odds ratio [OR], 0.55; 95% CI, 0.31-0.96; P = .03) or experienced the composite outcome of all-cause hospitalization or death (37 of 116 individuals [31.9%] vs 51 of 113 individuals [45.1%]; OR, 0.57; 95% CI, 0.33-0.98; P = .04). Participants in the internet CDM group had a lower risk of time to first hospitalization (hazard ratio, 0.62; 95% CI, 0.39-0.97; P = .04) than those in the usual care group. Conclusions and Relevance: In this study, an internet-based self-management program did not result in a significant reduction in hospitalization. However, fewer participants in the intervention group were admitted to the hospital or experienced the composite outcome of all-cause hospitalization or death. These findings suggest the internet CDM program has the potential to augment primary care among patients with multiple chronic diseases. Trial Registration: ClinicalTrials.gov Identifier: NCT01342263.

Conceptualising 'Benefits Beyond Health' in the Context of the Quality-Adjusted Life-Year: A Critical Interpretive Synthesis.

There is growing interest in extending the evaluative space of the quality-adjusted life-year framework beyond health. Using a critical interpretive synthesis approach, the objective was to review peer-reviewed literature that has discussed non-health outcomes within the context of quality-adjusted life-years and synthesise information into a thematic framework. Papers were identified through searches conducted in Web of Science, using forward citation searching. A critical interpretive synthesis allows for the development of interpretations (synthetic constructs) that go beyond those offered in the original sources. The final output of a critical interpretive synthesis is the synthesising argument, which integrates evidence from across studies into a coherent thematic framework. A concept map was developed to show the relationships between different types of non-health benefits. The critical interpretive synthesis was based on 99 papers. The thematic framework was constructed around four themes: (1) benefits affecting well-being (subjective well-being, psychological well-being, capability and empowerment); (2) benefits derived from the process of healthcare delivery; (3) benefits beyond the recipient of care (spillover effects, externalities, option value and distributional benefits); and (4) benefits beyond the healthcare sector. There is a wealth of research concerning non-health benefits and the evaluative space of the quality-adjusted life-year. Further dialogue and debate are necessary to address conceptual and normative challenges, to explore the societal willingness to sacrifice health for benefits beyond health and to consider the equity implications of different courses of action.

The Use of SMS Text Messaging to Improve the Hospital-to-Community Transition in Patients With Acute Coronary Syndrome (Txt2Prevent): Results From a Pilot Randomized Controlled Trial.

BACKGROUND: Acute coronary syndrome (ACS) is a leading cause of hospital admission in North America. Many patients with ACS experience challenges after discharge that impact their clinical outcomes and psychosocial well-being. SMS text messaging has the potential to provide support to patients during this postdischarge period. OBJECTIVE: This study pilot tested a 60-day SMS text messaging intervention (Txt2Prevent) for patients with ACS. The primary objective was to compare self-management domains between usual care and usual care plus Txt2Prevent. The secondary objectives were to compare medication adherence, health-related quality of life, self-efficacy, and health care resource use between groups. The third objective was to assess the feasibility of the study protocol and the acceptability of the intervention. METHODS: This was a randomized controlled trial with blinding of outcome assessors. We recruited 76 patients with ACS from St. Paul's Hospital in Vancouver, Canada, and randomized them to 1 of 2 groups within 7 days of discharge. The Txt2Prevent program included automated 1-way SMS text messages about follow-up care, self-management, and healthy living. Data were collected during the index admission and at 60 days after randomization. The primary outcome was measured with the Health Education Impact Questionnaire (heiQ). Other outcomes included the EQ-5D-5L, EQ-5D-5L Visual Analog Scale, a modified Sullivan Cardiac Self-Efficacy Scale, and Morisky Medication Adherence Scale scores, and self-reported health care resource use. Analyses of covariance were used to test the effect of group assignment on follow-up scores (controlling for baseline) and were considered exploratory in nature. Feasibility was assessed with descriptive characteristics of the study protocol. Acceptability was assessed with 2 survey questions and semistructured interviews. RESULTS: There were no statistically significant differences between the groups for the heiQ domains (adjusted mean difference [Txt2Prevent minus usual care] for each domain-Health-directed activity: -0.13, 95% CI -0.39 to 0.13, P=.31; Positive and active engagement in life: 0.03, 95% CI -0.19 to 0.25, P=.76; Emotional distress: 0.04, 95% CI -0.22 to 0.29, P=.77; Self-monitoring and insight: -0.14, 95% CI -0.33 to 0.05, P=.15; Constructive attitudes and approaches: -0.10, 95% CI -0.36 to 0.17, P=.47; Skill technique and acquisition: 0.05, 95% CI -0.18 to 0.27, P=.69; Social integration and support: -0.12, 95% CI -0.34 to 0.10, P=.27; and Health services navigation: -0.05, 95% CI -0.29 to 0.19, P=.69). For the secondary outcomes, there were no statistically significant differences in adjusted analyses except in 1 self-efficacy domain (Total plus), where the Txt2Prevent group had lower scores (mean difference -0.36, 95% CI -0.66 to -0.50, P=.03). The study protocol was feasible, but recruitment took longer than expected. Over 90% (29/31 [94%]) of participants reported they were satisfied with the program. CONCLUSIONS: The Txt2Prevent study was feasible to implement; however, although exploratory, there were no differences between the 2 groups in adjusted analyses except for 1 self-efficacy domain. As the intervention appeared acceptable, there is potential in using SMS text messages in this context. The design of the intervention may need to be reconsidered to have more impact on outcome measures. TRIAL REGISTRATION: ClinicalTrials.gov NCT02336919; https://clinicaltrials.gov/ct2/show/NCT02336919. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.6968.

Correction: An economic analysis of the health-related benefits associated with bicycle infrastructure investment in three Canadian cities.

[This corrects the article DOI: 10.1371/journal.pone.0246419.].

An economic analysis of the health-related benefits associated with bicycle infrastructure investment in three Canadian cities.

OBJECTIVES: Decision-makers are increasingly requesting economic analyses on transportation-related interventions, but health is often excluded as a determinant of value. We assess the health-related economic impact of bicycle infrastructure investments in three Canadian cities (Victoria, Kelowna and Halifax), comparing a baseline reference year (2016) with the future infrastructure build-out (2020). METHODS: The World Health Organization's Health Economic Assessment Tool (HEAT; version 4.2) was used to quantify the economic value of health benefits associated with increased bicycling, using a 10-year time horizon. Outputs comprise premature deaths prevented, carbon emissions avoided, and a benefit:cost ratio. For 2016-2020, we derived cost estimates for bicycle infrastructure investments (including verification from city partners) and modelled three scenarios for changes in bicycling mode share: 'no change', 'moderate change' (a 2% increase), and 'major change' (a 5% increase). Further sensitivity analyses (32 per city) examined how robust the moderate scenario findings were to variation in parameter inputs. RESULTS: Planned bicycle infrastructure investments between 2016 and 2020 ranged from $28-69 million (CAD; in 2016 prices). The moderate scenario benefit:cost ratios were between 1.7:1 (Victoria) and 2.1:1 (Halifax), with the benefit estimate incorporating 9-18 premature deaths prevented and a reduction of 87-142 thousand tonnes of carbon over the 10-year time horizon. The major scenario benefit:cost ratios were between 3.9:1 (Victoria) and 4.9:1 (Halifax), with 19-43 premature deaths prevented and 209-349 thousand tonnes of carbon averted. Sensitivity analyses showed the ratio estimates to be sensitive to the time horizon, investment cost and value of a statistical life inputs. CONCLUSION: Within the assessment framework permitted by HEAT, the dollar value of health-related benefits exceeded the cost of planned infrastructure investments in bicycling in the three study cities. Depending on the decision problem, complementary analyses may be required to address broader questions relevant to decision makers in the public sector.

An Exploration on Attribute Non-attendance Using Discrete Choice Experiment Data from the Irish EQ-5D-5L National Valuation Study.

BACKGROUND: Generic measures of health-related quality of life (HRQoL) permit comparisons of competing demands for healthcare resources using outcomes that reflect the preferences of tax payers. EQ-5D instruments are the most commonly used generic, preference-based measures of HRQoL. The EQ-5D-5L enables respondents to describe their health state using five dimensions of health, each with five response levels. The standardised protocol for the valuation of EQ-5D-5L health states comprises use of the composite time trade-off valuation technique, supplemented by a discrete choice experiment (DCE). OBJECTIVE: This paper presents the first exploration on attribute non-attendance (ANA) to the dimensions of the EQ-5D-5L using DCE data collected following the standardised protocol. METHOD: This paper uses the equality constrained latent class model and the endogenous attribute attendance model to examine ANA to the dimensions of the EQ-5D-5L. RESULTS: The results suggest that respondents are less likely to consider the physical dimensions of the EQ-5D-5L (such as self-care and usual activities) when evaluating the health states. The effects of ANA on utility scores depends on the interpretation of the underlying reasons for ANA. CONCLUSIONS: We recommend that future value sets based in whole or in part on DCE data examine the impact of and reasons for non-attendance in national valuation studies.

Empirical Validity of a Generic, Preference-Based Capability Wellbeing Instrument (ICECAP-A) in the Context of Spinal Cord Injury.

BACKGROUND: Assessing the validity of generic instruments across different clinical contexts is an important area of methodological research in economic evaluation and outcomes measurement. OBJECTIVE: Our objective was to examine the empirical validity of a generic, preference-based capability wellbeing instrument (ICECAP-A) in the context of spinal cord injury. METHODS: This study consisted of a secondary analysis of data collected using an online cross-sectional survey. The survey included questions regarding demographics, injury classifications and characteristics, secondary health conditions, quality of life and wellbeing, and functioning in activities of daily living. Analysis comprised the descriptive assessment of Spearman's rank correlations between item-/dimension-level data for the ICECAP-A and four preference-based health-related quality of life (HRQoL) instruments, and discriminant and convergent validity approaches to examine 21 evidence-informed or theoretically derived constructs. Constructs were defined using participant and injury characteristics and responses to a range of health, wellbeing and functioning outcomes. RESULTS: Three hundred sixty-four individuals completed the survey. Mean index score for the ICECAP-A was 0.761; 12 (3%) individuals reported full capability (upper anchor; score = 1), and there were no reports of zero capabilities (lower anchor; score = 0). The strongest correlations were dominated by items and dimensions on the comparator (HRQoL) instruments that are non-health aspects of quality of life, such as happiness and control over one's life (including self-care). Of 21 hypothesised constructs, 19 were confirmed in statistical tests, the exceptions being the exploratory hypotheses regarding education and age at injury. CONCLUSION: The ICECAP-A is an empirically valid outcome measure for assessing capability wellbeing in people with spinal cord injury living in a community setting. The extent to which the ICECAP-A provides complementary information to preference-based HRQoL instruments is dependent on the comparator.

Generic preference-based health-related quality of life in children with neurodevelopmental disorders: a scoping review.

AIM: To describe how generic preference-based health-related quality of life (HRQoL) instruments have been used in research involving children with neurodevelopmental disorders (NDD). METHOD: A systematic search of nine databases identified studies that used generic preference-based HRQoL instruments in children with NDD. Data extracted following the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Review guidelines included type of NDD, instrument used, respondent type, justification, and critical appraisal for these selections. RESULTS: Thirty-six studies were identified: four cost-utility analyses; 15 HRQoL assessments; five economic burden studies; three intervention studies; and nine 'other'. The Health Utilities Index (Mark 2 and Mark 3) and EuroQoL 5D (EQ-5D; three-level EQ-5D, five-level EQ-5D, and the youth version of the EQ-5D) instruments were most frequently used (44% and 31% respectively). The relatively low use of these instruments overall may be due to a lack of psychometric evidence, inconsistency in justification for and lack of clarity on appropriate respondent type and age, and geographical challenges in applying preference weights. INTERPRETATION: This study highlights the dearth of studies using generic preference-based HRQoL instruments in children with NDD. The use of cost-utility analysis in this field is limited and validation of these instruments for children with NDD is needed. The quality of data should be considered before guiding policy and care decisions. WHAT THIS PAPER ADDS: Limited use of generic preference-based health-related quality of life (HRQoL) instruments in studies on children with neurodevelopmental disorders. Only 11% of studies were cost-utility analyses. Inconsistencies in justification for choosing generic preference-based HRQoL instruments and respondent types.

Pan-Canadian Estimates of Chronic Pain Prevalence From 2000 to 2014: A Repeated Cross-Sectional Survey Analysis.

Recent temporal trends in the population prevalence of chronic pain in Canada on a national and provincial level are unknown. Five cycles of the Canadian Community Health Survey (2000/2001, 2007/2008, 2009/2010, 2011/2012, and 2013/2014) were used to derive population-based estimates of the self-reported prevalence of chronic pain. Sensitivity analyses examined chronic pain prevalence among those reporting no other chronic health conditions. The prevalence of chronic pain among the general Canadian population increased by almost 4.0% (to 21.0%) in 2011/2012, after being in the range of 15.7 to 17.2% from 2000 to 2009/2010. The sudden increase in prevalence was observed 1) across all provinces in Canada, 2) in all age categories, and 3) among Canadians with no other chronic health conditions. Increasing chronic pain prevalence in Canada, most significantly occurring between 2010 and 2012, and including among healthy and young individuals, emphasizes the need for targeted research and resources to help alleviate chronic pain. PERSPECTIVE: This study uncovers a significant increase in chronic pain prevalence in Canada between 2009/2010 and 2011/2012, driven by younger Canadians that are free of the most common chronic health conditions. This discovery emphasizes the importance of further directed research and resources to help mitigate the trend of increasing chronic pain.

Fall Prevention Mobile Clinic: A Novel Fall Prevention Program for Community-Dwelling Older Adults.

ABSTRACTCauses of falls in older adults are common, multifactorial, and can lead to significant injury. This before-and-after study evaluated the benefits of a Fall Prevention Mobile Clinic (FPMC) in reducing the risk of falling in older adults in British Columbia, Canada. Four hundred seventy-six participants (average age of 83.6 years) enrolled in the study and were followed for 12 months after attending the FPMC. At 12-month follow-up, the mean percentage uptake of fall prevention recommendations was 48.8 per cent (SD = 25.7%), the Timed Up and Go mobility measure improved from a median of 19.04 seconds to 17.45 seconds and the number of participants falling decreased from 64.8 per cent (in the 12 months before attending the clinic) to 55.6 per cent (in the 12 months after attending the clinic) (p = .012). After attending the FPMC, participants acted on recommendations, improved mobility and decreased their risk of future falls.