Dataset Information

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

ABSTRACT:

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 Māori and (4) map the HRQoL measure dimensions to commonly used Māori 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).

SUBMITTER: McCarty G

PROVIDER: S-EPMC8174526 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundChildren's oral health-related quality of life (COHQoL) measures are well known and widely used. However, rigorous systematic reviews of these measures and analyses of their quality are in absence.ObjectivesTo systematically review and quantitatively assess the quality of COHQoL measures through a scoping review.Data sourcesSystematic literature search of PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), EMBASE (Excerpta Medica database), HaPI (Health and Psychosocial Instruments), and DOSS (Dentistry and Oral Sciences Source).Study eligibilityThe measure's focus was COHQoL; the child age ranged from 5 to 14 years; the publication was either a research article or a systematic review and related to caries; and it was written in English or had an English abstract. Two authors independently selected the studies. Disagreements were reconciled by group discussions with a third author.AppraisalThe International Society for Quality of Life Research minimum standards for patient-reported outcome measures were used for quality appraisal.SynthesisDescriptive analysis.ResultsWe identified 18 measures. Their quality scores ranged from 9.5 to 15.0 on a scale of 16. The quality appeared to bear no relationship to the citation and use of these measures. However, elements of these measures might be more useful than others, depending on the age-specific use and primary quality concerns.LimitationsSome of the information on the minimum standards of the 18 measures cannot be found in the existing literature. Measures published without English abstract were not searched.ConclusionsThe quality of these measures is suboptimal. Researchers and practitioners in this field should exercise caution when choosing and using these measures. Efforts at improving the quality of the COHQoL measures, such as refining existing ones or developing new measures, are warranted.Knowledge transfer statementResearchers, clinician scientists, and clinicians can use the results of this study when deciding which oral health-related quality of life measure they wish to use in children.

Project description:Several measures of oral health-related quality of life have been developed for children. The most frequently used are the Child Perceptions Questionnaire (CPQ), the Child Oral Impacts on Daily Performances (C-OIDP) and the Child Oral Health Impact Profile (COHIP). The aim of this study was to assess the methodological quality of the development and testing of these three measures.A systematic search strategy was used to identify eligible studies published up to December 2012, using both MEDLINE and Web of Science. Titles and abstracts were read independently by two investigators and full papers retrieved where the inclusion criteria were met. Data were extracted by two teams of two investigators using a piloted protocol. The data were used to describe the development of the measures and their use against existing criteria. The methodological quality and measurement properties of the measures were assessed using standards proposed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) group.The search strategy yielded 653 papers, of which 417 were duplicates. Following analysis of the abstracts, 119 papers met the inclusion criteria. The majority of papers reported cross-sectional studies (n?=?117) with three of longitudinal design. Fifteen studies which had used the original version of the measures in their original language were included in the COSMIN analysis. The most frequently used measure was the CPQ. Reliability and construct validity appear to be adequate for all three measures. Children were not fully involved in item generation which may compromise their content validity. Internal consistency was measured using classic test theory with no evidence of modern psychometric techniques being used to test unidimensionality of the measures included in the COSMIN analysis.The three measures evaluated appear to be able to discriminate between groups. CPQ has been most widely tested and several versions are available. COHIP employed a rigorous development strategy but has been tested in fewer populations. C-OIDP is shorter and has been used successfully in epidemiological studies. Further testing using modern psychometric techniques such as item response theory is recommended. Future developments should also focus on the development of measures which can evaluate longitudinal change.