Development of the First Health-Related Quality of Life Questionnaires in Arabic for Women with Polycystic Ovary Syndrome (Part I): The Creation and Reliability Analysis of PCOSQoL-47 and PCOSQoL-42 Questionnaires.

Samih A Odhaib,Fatemeh Nasiri Amiri,Mahmood T Altemimi,Husam J Imran,Abbas A Mansour,Haider A Alidrisi,Miaad J Mohammed

doi:10.7759/cureus.14735

Samih A Odhaib, Fatemeh Nasiri Amiri + Show 5 more

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https://doi.org/10.7759/cureus.14735

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Abstract

Background and objectiveWe lack a reliable and validated health-related quality of life (HRQoL) questionnaire to measure the negative impact of polycystic ovary syndrome (PCOS) on the various aspects of the lives of Arabic women, which addresses sexuality in married women only. Hence, we aimed to develop two separate, simple, reliable, validated, and easily interpretable HRQoL questionnaires in Arabic for married and unmarried women with PCOS for effective QoL evaluation.Materials and methodsThe development and reliability analysis of the Polycystic Ovary Syndrome Quality of Life (PCOSQoL)-47 and PCOSQoL-42 involved two quantitative and qualitative phases. Phase 1 included retrieval of 158 items from 584 PubMed articles, item reduction, Arabic translation, content and face validity testing, creation of a five-domain draft (53 items for married and 45 items for unmarried women), with no sexuality domain for unmarried women. Phase 2 involved test-retest reliability, which involved using the Spearman's correlation, Wilcoxon nonparametric signed-rank, and internal consistency using Cronbach's-alpha, inter-item, and intraclass correlation (ICC) coefficients, as well as creating a second draft (47 items for married and 42 items for unmarried women).ResultsThe content validity indices testing by 26 healthcare experts decreased the item pool to 57 items for married and 45 items for unmarried women. Face validity by another 30 experts and 30 women from each group resulted in a further reduction to 53 items for married and 45 items for unmarried women, to be tested in a pilot study, which included another 30 women from each group. Test-retest reliability analysis by 195 married and 173 unmarried women revealed significantly excellent redundancy, reliability, and stability of items (highly significant Cronbach's alpha and ICC by internal consistency testing), and reduced the item pool to 47 items for married and 42 items for unmarried women.ConclusionsBoth questionnaires were found to be highly reliable for the HRQoL evaluation among both married and unmarried Arabic women with different phenotypes of PCOS.

Highlights

The phenotypic heterogeneity in women with polycystic ovary syndrome (PCOS) is broad and associated with significant adverse effects on their health-related quality of life (HRQoL) [1]
Test-retest reliability analysis by 195 married and 173 unmarried women revealed significantly excellent redundancy, reliability, and stability of items, and reduced the item pool to 47 items for married and 42 items for unmarried women. Both questionnaires were found to be highly reliable for the HRQoL evaluation among both married and unmarried Arabic women with different phenotypes of PCOS
Many authors have translated the HRQoL questionnaires containing domains or items pertaining to individual sexuality to evaluate their populations [3,4,5,6,7], but they often fail to take into account the local community norms regarding sexual relationships in specific cultures, where sex may be confined to marriage and marital sex is the only legitimate sexual relationship allowed

Summary

Introduction

The phenotypic heterogeneity in women with polycystic ovary syndrome (PCOS) is broad and associated with significant adverse effects on their health-related quality of life (HRQoL) [1]. These effects often manifest as psychological and physical distress, and self-esteem misperception, due to the failure to conform to the idealized norms of women's aesthetic and optimal health standards [2]. We lack a reliable and validated health-related quality of life (HRQoL) questionnaire to measure the negative impact of polycystic ovary syndrome (PCOS) on the various aspects of the lives of Arabic women, which addresses sexuality in married women only. We aimed to develop two separate, simple, reliable, validated, and interpretable HRQoL questionnaires in Arabic for married and unmarried women with PCOS for effective QoL evaluation

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