The Suitability of Polycystic Ovary Syndrome-Specific Questionnaires for Measuring the Impact of PCOS on Quality of Life in Clinical Trials

Abstract Objectives Generic patient-reported outcome (PRO) measures underestimate the impact of polycystic ovary syndrome (PCOS) on quality of life (QoL). The aim of this review was to identify PCOS-specific QoL measures and establish whether their development history and measurement properties supp...

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Bibliographic Details
Published in:Value in health 2010-06, Vol.13 (4), p.440-446
Main Authors: Malik-Aslam, Aysha, MSc, Reaney, Matthew D., MSc, Speight, Jane, MSc, PhD, CPsychol
Format: Article
Language:English
Subjects:
Clinical trials
Clinical Trials as Topic
Female
Humans
Identification
Internal Medicine
Measurement
Polycystic ovarian syndrome
Polycystic Ovary Syndrome
Property
Quality of Life
questionnaire
Reproducibility of Results
Surveys and Questionnaires
Treatment Outcome
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Summary:Abstract Objectives Generic patient-reported outcome (PRO) measures underestimate the impact of polycystic ovary syndrome (PCOS) on quality of life (QoL). The aim of this review was to identify PCOS-specific QoL measures and establish whether their development history and measurement properties support their use in clinical trials. Methods A systematic search was conducted using terms synonymous with “PCOS” and “QoL.” Following identification of measures, further searches were undertaken using the questionnaire name and abbreviation to explore its use, development history, and demonstrated measurement properties. Results Of 56 abstracts screened, 21 reported using PRO measures. One PCOS-specific QoL measure was identified: the PolyCystic Ovary Syndrome Questionnaire (PCOSQ). Nine papers show that the PCOSQ's development history is somewhat incomplete, and that it does not have good content validity. The PCOSQ subscales demonstrate acceptable levels of reliability (0.70–0.97) and partial known-groups validity as well as convergent/divergent validity with other PRO instruments. Responsiveness to change is variable and minimally important differences have not been established. Conclusions The PCOSQ is the only condition-specific measure of the impact of PCOS on QoL. Additional research is required to ensure its comprehensiveness, sensitivity, and to guide interpretation prior to including in clinical trials.
ISSN:1098-3015
1524-4733
DOI:10.1111/j.1524-4733.2010.00696.x