Abstract

ObjectivesTo develop separate item banks for three health domains of health-related quality of life (HRQOL) ranked as important by Singaporeans – physical functioning, social relationships, and positive mindset.MethodsWe adapted the Patient Reported Outcomes Measurement Information System Qualitative Item Review protocol, with input and endorsement from laymen and experts from various relevant fields. Items were generated from 3 sources: 1) thematic analysis of focus groups and in-depth interviews for framework (n = 134 participants) and item(n = 52 participants) development, 2) instruments identified from a literature search (PubMed) of studies that developed or validated a HRQOL instrument among adults in Singapore, 3) a priori identified instruments of particular relevance. Items from these three sources were “binned” and “winnowed” by two independent reviewers, blinded to the source of the items, who harmonized their selections to generate a list of candidate items (each item representing a subdomain). Panels with lay and expert representation, convened separately for each domain, reviewed the face and content validity of these candidate items and provided inputs for item revision. The revised items were further refined in cognitive interviews.ResultsItems from our qualitative studies (51 physical functioning, 44 social relationships, and 38 positive mindset), the literature review (36 instruments from 161 citations), and three a priori identified instruments, underwent binning, winnowing, expert panel review, and cognitive interview. This resulted in 160 candidate items (61 physical functioning, 51 social relationships, and 48 positive mindset).ConclusionsWe developed item banks for three important health domains in Singapore using inputs from potential end-users and the published literature. The next steps are to calibrate the item banks, develop computerized adaptive tests (CATs) using the calibrated items, and evaluate the validity of test scores when these item banks are administered adaptively.

Highlights

  • Health has traditionally been measured by assessing the presence of disease, as seen in the use of mortality and morbidity statistics to compare health among various countries

  • In Stage 3, we aimed to develop item banks for three of these highly-ranked health domains: Physical Functioning, Social Relationships, and Positive Mindset

  • This study was reviewed and approved by the Singhealth institutional review board (CIRB Reference: 2014/916/A and 2016/2031) and has been conducted according to the principles expressed in the Declaration of Helsinki; written consent was obtained from all study participants

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Summary

Introduction

Health has traditionally been measured by assessing the presence of disease, as seen in the use of mortality and morbidity statistics to compare health among various countries. Numerous instruments have been developed, validated, and used to measure health-related quality of life (HRQOL), these include instruments from the Patient-Reported Outcomes Measurement Information System (PROMIS), the World Health Organization Quality of Life (WHOQOL) group, the Short Form-36 (SF-36) of the Medical Outcomes Study, and the EuroQOL five-dimension questionnaire (EQ-5D) These generic instruments make possible the measurement of HRQOL across different disease conditions. There has been significant effort to adapt these instruments to the Singapore context, several key issues remain These instruments do not adequately account for the cultural differences between the West and Asia, and do not accurately reflect the conceptualization, priorities, and experiences of health among people in Asia - this has been shown in studies done in Japan [3], China [4], Taiwan [5], and Singapore [6,7,8]. These instruments are viewed as sufficiently accurate to measure HRQOL on a population level, they generally do not measure HRQOL with enough precision to measure the health of individual patients over time [6, 7, 9, 10]

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