Abstract
Patient-reported outcomes are recognized as essential for the evaluation of medical and public health interventions. Over the last 50 years, health-related quality of life (HRQoL) research has grown exponentially from 0 to more than 17,000 papers published annually. We provide an overview of generic HRQoL measures used widely in epidemiological studies, health services research, population studies, and randomized clinical trials [e.g., Medical Outcomes Study SF-36 and the Patient-Reported Outcomes Measurement Information System (PROMIS®)-29]. In addition, we review methods used for economic analysis and calculation of the quality-adjusted life year (QALY). These include the EQ-5D, the Health Utilities Index (HUI), the self-administered Quality of Well-being Scale (QWB-SA), and the Health and Activities Limitation Index (HALex). Furthermore, we consider hybrid measures such as the SF-6D and the PROMIS-Preference (PROPr). The plethora of HRQoL measures has impeded cumulative science because incomparable measures have been used in different studies. Linking among different measures and consensus on standard HRQoL measurement should now be prioritized. In addition, enabling widespread access to common measures is necessary to accelerate future progress.
Highlights
The goal of health care and preventive medicine is to improve health
Health-Related Quality of Life 9.3 Review in Advance first posted on December 9, 2021. (Changes may still occur before final publication.)
Health-Related Quality of Life 9.5 Review in Advance first posted on December 9, 2021. (Changes may still occur before final publication.)
Summary
The goal of health care and preventive medicine is to improve health. Over the past 50 years, there has been growing recognition among researchers and clinicians that comprehensive measurement of health outcomes includes a combination of life expectancy and health-related quality of life (HRQoL) during the years prior to death. The MOS SF-36 is the most widely used generic profile HRQoL measure to date [122] It includes 36 items selected from a large pool of items in the MOS [40]. A study of 536 primary care patients who initiated antidepressant treatment showed that physical functioning, role limitations caused by physical health, pain, and general health perceptions scales improved significantly by 0.28–0.49 SD units, but the PCS did not change significantly [113]. On the basis of the individual’s response to the first item, the person’s score and standard error of measurement (SEM) are estimated using prior calibrations of the item bank This approach is used to select an item that is likely to provide additional information about where the individual is located on the scale and to reduce the SEM. A major benefit of IRT is the ability to assess differential item functioning or equivalence of measurement by subgroup (e.g., age, gender, race/ethnicity) or mode of administration [110, 116]
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