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

IntroductionMeasures 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 Māori and (4) map the HRQoL measure dimensions to commonly used Māori models of health.Methods and analysisThe 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 disseminationEthical 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).

P332 Mindfulness-based stress reduction and cognitive intervention improve the health-related quality-of-life and ability to work in Crohn’s disease patients: A randomised controlled trial

Background Crohn’s disease (CD) patients have reduced quality-of-life (QoL) in physical, emotional and social domains, and diminished work and leisure activities. We examined whether Mindfulness-Based Stress Reduction and Cognitive Intervention (‘Intervention’) can improve QoL and ability to work. Methods Patients (≥18 years), Harvey–Bradshaw Index (HBI) >4 and <16, were randomised to Intervention or Control groups. Intervention was taught in 8 weekly sessions by social workers via SKYPETM with twice-daily practice and back-report required. Medications were not controlled. HBI was completed at entry (T1) and 12 weeks (T2), and these questionnaires: (1) Short inflammatory bowel disease questionnaire (SIBDQ), disease-specific HRQoL measure. (2) Short-Form 12 (SF-12) questionnaire, generic HRQoL measure of physical health (PH) and mental health (MH). (3) EQ-5D-3L HRQoL questionnaire. (4) Work Productivity and Activity Impairment (WPAI) questionnaire, measuring absenteeism, presenteeism (reduced productivity), work impairment (composite of absenteeism and presenteeism), and leisure activity impairment. Statistics: Pearson Chi-squared, Wilcoxon signed-rank test. Results There were 39 Intervention and 43 Control patients. Demographic and medical characteristics (median, %) were: age 30 y; women 65%, married/partner 48%; higher education 83%; BMI 22; non- or past-smokers 92%; disease duration 5 y; HBI 8 (range 5–15); past surgery 17%; Montreal A2 89%, L2+L3 89%, B1+B2 89%, perianal disease 18%; drugs: corticosteroids 4%, 5-ASA 5%, immunomodulators 21%, biologics 43%; (p = ns between groups). Socio-economic status was higher in Intervention (87% = good/very good) than Control (58%, p = 0.016). HBI, SIBDQ and SF PH improved in both groups, but SF MH, EQ-5D-3L and all WPAI measures improved only in Intervention group (Table). Non-significance of WPAI indices between groups resulted from small sample size. Conclusion Mindfulness-Based Stress Reduction and Cognitive Intervention led to increased QoL and less work and activity impairment. If confirmed in a large cohort the intervention may be offered to all CD patients.