Development of an ultra-short measure of eight domains of health-related quality of life for research and clinical care: the patient-reported outcomes measurement information system® PROMIS®-16 profile

Abstract

Purpose: We describe development of a short health-related quality of life measure, the patient-reported outcomes measurement information system® (PROMIS®)-16 Profile, which generates domain-specific scores for physical function, ability to participate in social roles and activities, anxiety, depression, sleep disturbance, pain interference, cognitive function, and fatigue.

Methods: An empirical evaluation of 50 candidate PROMIS items and item pairs was conducted using data from a sample of 5775 respondents from Amazon's Mechanical Turk (MTurk). Results and item response theory information curves for a subset of item pairs were presented and discussed in a stakeholder meeting to narrow the candidate item sets. A survey of the stakeholders and 124 MTurk adults was conducted to solicit preferences among remaining candidate items and finalize the measure.

Results: Empirical evaluation showed minimal differences in basic descriptive statistics (e.g., means, correlations) and associations with the PROMIS-29 + 2 Profile, thus item pairs were further considered primarily based on item properties and content. Stakeholders discussed and identified subsets of candidate item pairs for six domains, and final item pairs were agreed upon for two domains. Final items were selected based on stakeholder and MTurk-respondent preferences. The PROMIS-16 profile generates eight domain scores with strong psychometric properties.

Conclusion: The PROMIS-16 Profile provides an attractive brief measure of eight distinct domains of health-related quality of life, representing an ideal screening tool for clinical care, which can help clinicians quickly identify distinct areas of concern that may require further assessment and follow-up. Further research is needed to confirm and extend these findings.

Keywords: Clinical screening; Health-related quality of life; PROMIS profile; Short-form development.

Fig. 1

Gold standard (GS) and item pair information curves by domains of the PROMIS-16 presented to stakeholders. a Physical function (PF); b ability to participate in social roles and activities (SOC); c anxiety (ANX); d depression (DEP); e sleep disturbance (SLP); f pain interference (PI); g cognitive function—abilities (CF); h fatigue (FTG). Numbers following the domain abbreviations in the figure legend identify the specific item pair as listed in Supplement Table S2. SOC_16 and SOC_46 (social roles domain) were not presented in the first stakeholder meeting but were added to the figure after discussion. In each domain, the selected item pair has a diamond marker. The dashed lines indicate the cut-offs for reliability, with reliability of 0.90 at the upper line; 0.80 at the middle line; and 0.71 at the bottom line