Development of the First Health-Related Quality of Life Questionnaires in Arabic for Women With Polycystic Ovary Syndrome (Part III): Scoring System Interpretation.

Abstract

Our team developed the first highly reliable, validated, easily comprehensible, and self-administered polycystic ovary syndrome quality of life (PCOSQOL)-42 and PCOSQOL-47 questionnaires for unmarried and married women with polycystic ovary syndrome (PCOS), respectively. Using such scales needs a scoring system that covers the responses to each item per domain and overcomes the missing responses. we developed a scoring system for PCOSQOL-42 and PCOSQOL-47 to interpret the items' responses at any similar population. The scoring was inspired by the 5-point Likert scale that was used during the creation of PCOSQOL-42 and PCOSQOL-47, where each item represents the woman's experience in the last two weeks before seeking consultation, i.e., Never=5 or no effect, on the health-related quality of life (HRQOL), (Seldom=4), (Quite often=3), (Very often=2), and (Always=1 or the maximal effect on the QOL). The sum of the total points in each item per domain was evaluated. Then we divided the results by the number of the items that had been scored only to get the final domain score as a (mean ± SD). The ultimate or final score per the questionnaire was gained from the sum of individual domain scores divided by the number of domains that had been evaluated. Ultimately, the first interval values (from 1 to < 3 points) represent marked effects on HRQOL; second interval values (from 3 to < 4 points) represent the marginal effect on HRQOL; third interval values (from 4 to < 5 points) represent the minimal effect on HRQOL; fourth interval (5 points) represents no effect on HRQOL. The lower the score, the greater the negative impact on HRQOL. Although all domains in both questionnaires showed a marked reduction in HRQOL, women in either cohort were more concerned with their body image dissatisfaction and psychological distress induced by PCOS than their reproductive concerns. The mean score calculated for the questionnaire had a greater negative impact than the emotions subscale and was similar to the subscale for infertility. All mean points per item and domain values indicate a marked effect (< 3 points) on QOL using PCOSQOL-42 and PCOSQOL-47. All values referred to a marked reduction in PCOSQOL-47 points, whether item or domain-wise. The current scoring system provides an easy way to interpret the responses in both questionnaires and overcome the missing responses in any item per domain. There was a marked impact on all domains of HRQOL using both questionnaires, with a special impact on body image and psychological concerns. The responses of women in either cohort to the sexual and reproductive items were extremely high, reflecting the scope of this problem in the life of women with PCOS.