Describing the health-related quality of life of Maori adults in Aotearoa me Te Waipounamu (New Zealand).

PURPOSE: In Aotearoa me Te Waipounamu (New Zealand; NZ) there are considerable inequities in health status and outcomes for Maori, the Indigenous peoples of NZ. It is therefore important that the health status and preferences of Maori are specifically considered in healthcare policy and decision making. This paper describes the health-related quality of life of 390 Maori adults who took part in the NZ EQ-5D-5L valuation study. METHODS: Responses on the five dimensions of the EQ-5D-5L were dichotomised into "no problems" and "any problems", summarised and disaggregated by age group. Mean preference weights were reported by age group and overall. Mean utility values (calculated by applying each participant's preference weights to their EQ-5D-5L profile) were summed and respective means and standard deviations reported by age, chronic disease status and disability. RESULTS: The EQ-5D-5L dimensions with the highest proportion of participants reporting any problems were pain/discomfort (61.5%) and anxiety/depression (50%). The most commonly-reported chronic disease was mental illness/distress (24.6%). Anxiety/depression ranked as the most important dimension, with usual activities, the least important. The mean utility value was 0.83 with the lowest value (0.79) found in the 18-24 and 45-54 age groups. For participants with at least one chronic disease the mean utility value was 0.76 compared to 0.91 for those with none. CONCLUSION: To reduce inequities experienced by Maori it is crucial that the health status of Maori and the values Maori place on health-related quality of life are properly understood. This can only be achieved using Maori-specific data.

Creating an SF-6Dv2 social value set for New Zealand.

The SF-6D health descriptive system and its second version published in 2020, the SF-6Dv2, is used worldwide for valuing health-related quality of life (HRQoL) for economic evaluation and measuring patient-reported health outcomes. In this study, a valuation tool was developed and applied to create a social value set, comprising 18,750 health state values, for the SF-6Dv2 for New Zealand (NZ). This tool was adapted and extended from the one used to create a social value set for the EQ-5D-5L, a simpler health descriptive system with fewer dimensions and health states. The tool implements the PAPRIKA method, a type of adaptive discrete choice experiment, and a binary search algorithm to identify health states worse than dead and has extensive data quality controls to ensure the validity and reliability of the social value set derived from participants' personal value sets. The tool, accompanied by a short introductory video designed specifically for the SF-6Dv2, was distributed via an online survey to a large representative sample of adult New Zealanders in June-July 2022. The tool's data quality controls enabled participants who failed to understand or sincerely engage with the valuation tasks to be identified and excluded, resulting in the participants being pared down to a sub-sample of 2985 'high-quality' participants whose personal value sets were averaged for the social value set. These results, including participants' positive feedback, demonstrate the feasibility and acceptability of using the tool to value larger health descriptive systems such as the SF-6Dv2. Having successfully created an SF-6Dv2 social value set for NZ, the valuation tool can be readily applied to other countries, used to generate personal value sets for personalised medicine and adapted to create value sets for other health descriptive systems.

Health-related quality of life measures used with Indigenous children/youth in the Pacific Rim: a scoping review.

OBJECTIVE: To identify and describe (1) which health-related quality of life (HRQoL) measures have been used with Indigenous children/youth (aged 8-17 years) within the Pacific Rim; and (2) studies that refer to Indigenous health concepts in the use of child/youth HRQoL measures. DESIGN: A scoping review. DATA SOURCES: Ovid (Medline), PubMed, Scopus, Web of Science and CINAHL were searched up until 25 June 2020. ELIGIBILITY CRITERIA: Eligible papers were identified by two independent reviewers. Eligible papers were written in English, published between January 1990 and June 2020 and included an HRQoL measure used in research with Indigenous child/youth populations (aged between 8 and 17 years) in the Pacific Rim region. DATA EXTRACTION AND SYNTHESIS: Data extracted included study characteristics (year, country, Indigenous population, Indigenous sample size, age group), HRQoL measure characteristics (generic or condition-specific measure, child or adult measure, who completed the measure(s), dimensions, items and response scale of measure) and consideration of Indigenous concepts (created for Indigenous population, modified for Indigenous population, validated for Indigenous population, reliability in Indigenous populations, Indigenous involvement, reference to Indigenous theories/models/frameworks). RESULTS: After removing duplicates, 1393 paper titles and abstracts were screened, and 543 had full-text review for eligibility. Of these, 40 full-text papers were eligible, reporting on 32 unique studies. Twenty-nine HRQoL measures were used across eight countries. Thirty-three papers did not acknowledge Indigenous concepts of health, and only two measures were specifically created for use with Indigenous populations. CONCLUSIONS: There is a paucity of research investigating HRQoL measures used with Indigenous children/youth and a lack of involvement of Indigenous peoples in the development and use of HRQoL measures. We strongly recommend explicit consideration of Indigenous concepts when developing, validating, assessing and using HRQoL measures with Indigenous populations.

Use of health-related quality-of-life measures for Indigenous child and youth populations: a scoping review protocol.

INTRODUCTION: Measures of health-related quality-of-life (HRQoL) are increasingly important for evaluating healthcare interventions and treatments, understanding the burden of disease, identifying health inequities, allocating health resources and for use in epidemiological studies. Although many HRQoL measures developed for use in adult populations are robust, they are not necessarily designed, or appropriate, to measure HRQoL for children/youth. Furthermore, the appropriateness of HRQoL measures for use with Indigenous child/youth populations has not been closely examined. The aims of this scoping review are to (1) identify and describe empirical studies using HRQoL measures among children/youth (aged 8-17 years) from Indigenous populations within the Pacific Rim, (2) summarise the study designs and modes of HRQoL measure administration, (3) describe the key dimensions of the identified HRQoL measures used among Indigenous populations, including specifically among Maori and (4) map the HRQoL measure dimensions to commonly used Maori models of health. METHODS AND ANALYSIS: The scoping review framework developed by Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews guidelines will be followed for best practice and reporting. An iterative search of peer-reviewed published empirical research reporting the use of child/youth HRQoL measures among Indigenous populations will be conducted. This literature will be identified across the following five databases: Ovid (Medline), PubMed, Scopus, Web of Science and CINHAL. The search will be restricted to papers published in English between January 1990 and June 2020. Two reviewers will independently review the papers in two stages. A third reviewer will resolve any discrepancies that arise. A data charting form will be completed using data extracted from each paper. ETHICS AND DISSEMINATION: Ethical approval was not required for this scoping review. Dissemination will include publication of the scoping review in a peer-reviewed journal. This scoping review will inform a larger research project (HRC 20/166).

Predictors of subsequent injury for Maori in New Zealand.

INTRODUCTION: This paper identifies predictors of subsequent injury (SI) in a cohort of injured Maori. Interventions to reduce SI among indigenous populations would help overcome the disproportionate burden of subsequent injury experienced, thereby reducing inequities in injury outcomes and the overall burden of injury. METHODS: Interview data from the Prospective Outcomes of Injury Study (POIS) were combined with Accident Compensation Corporation (ACC; New Zealand's universal no-fault injury insurer) and hospital discharge datasets. Any injury event resulting in an ACC claim and occurring within 24 months of the injury for which participants were recruited to POIS was considered an SI. This was regardless of whether it was the same type, region or cause as the original injury or not. Predictors of SI were identified using modified Poisson regression. RESULTS: Of 566 participants, 62% (n=349) experienced ≥1 SI in the 24 months following their sentinel injury. Maori whose sentinel injury was an intracranial injury were more likely to sustain an SI compared to those whose sentinel injury was another type. SI was less likely to occur for participants whose sentinel injury was a lower extremity fracture or classified as "Other" (e.g. crush, burn, poisoning). SI were more common among those aged 18-29 years compared to those aged 30-49 years, and less common among those living with family compared to those who were living alone. CONCLUSIONS: More research into the circumstances of intracranial injury and SI among Maori is warranted. This would help inform the nature of interventions to prevent SI and the points at which these should be implemented.