COSMIN database

The suitability of polycystic ovary syndrome-specific questionnaires for measuring the impact of PCOS on quality of life in clinical trials

Malik-Aslam, A., Reaney, M. D., and Speight, J.
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.
Value Health
1524-4733 (Electronic)
Publication year:
Symptom status:
Emotional state
Physical state
General health perceptions / HRQoL:
Health-related quality of life
Adults (18-65)
Children (0-18)
Endocrine, nutritional and metabolic diseases and related symptoms
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
PCOSQ - Polycystic Ovary Syndrome Questionnaire