Adolescents' polycystic ovary syndrome health-related quality of life questionnaire (APQ-20): development and psychometric properties

Abstract

Several health-related quality of life (HRQOL) questionnaires for adults with polycystic ovary syndrome (PCOS) have been developed so far. However, an adolescent-specific HRQOL questionnaire for PCOS patients is still lacking. Hence, this study aimed to develop and validate a questionnaire to assess HRQOL in adolescents with PCOS. This mixed-method study was conducted in Tehran, Iran, from 2018 to 2020. The qualitative phase was conducted on 18 target participants, and in the quantitative phase, exploratory factor analysis (EFA) was performed on 200 adolescents with PCOS and confirmatory factor analyses (CFA) on the other 200 ones. The item-developing process was finalized with 77 questions. Concerning the optimum cutoff of content validity ratio, content validity index, kappa statistic coefficient, and item impact score, a draft with 55 items was finalized. Then, piloting scale was performed on 40 participants and considering the interitem correlation < 0.3, fifteen items were excluded. Based on the EFA, 20 items in six components (emotion and mood, loss of attractiveness due to the hirsutism, loss of attractiveness due to the acne, self-care, support, and menstrual cycle problem) that explain 60.3% of the variance were extracted. The CFA with acceptable values of goodness-of-fit statistics supports this construct validity. Results of reliability, floor, and ceiling effect were acceptable. Conclusion: Our study showed that the short questionnaire of APQ-20 is valid and reliable for assessment of the HRQOL of adolescents with PCOS. Further studies are needed to assess the feasibility and reliability of APQ-20 for assessing the HRQOL of adolescents with PCOS. It constitutes a significant step forward in the measurement of HRQOL of adolescents with PCOS. What is Known: • There is no disease-specific questionnaire for assessment of the health-related quality of life (HRQOL) of adolescents with polycystic ovary syndrome (PCOS). What is New: • The short questionnaire of APQ-20 is easy to use, valid, and reliable for the assessment of the HRQOL of adolescents with PCOS. • APQ-20 constitutes a significant step forward in the measurement of HRQOL of adolescents with PCOS.

Keywords: Adolescents; Confirmatory factor analysis; Exploratory factor analysis; Health-related quality-of-life; Polycystic ovary syndrome; Questionnaire; Reliability; Validity.