Respondents (n = 935) were 31.0 ± 5.8 years of age, mostly White (72%), well-educated (56% had a college degree), married (69%), and employed full-time (65%). Nearly three-quarters (74%) of the sample had one or more chronic conditions in addition to PCOS, such as hypertension, type 2 diabetes, arthritis, and hypothyroidism. Using social media allowed participation from within and outside the US: 80% of the respondents in the sample were from the US. The geographic areas and the number of respondents from each region are detailed in an additional file (see Additional file 1). See Table 1.

The means and standard deviations were calculated for the total HRQoL and HRQoL subscales and displayed in Table 2.

Table 3 shows the means and standard deviations (SD) for the questions in each of the six subscales. The lowest average was 1.36 with SD of 1.41 for the fertility item PCOSQB7 (In the past 4 weeks, how often have you experienced fear of divorce or separation?) and the highest average was 3.27 with SD of 1.23 for the obesity/menstrual item PCOSD1 (In the past 4 weeks, how often have you felt concerned about being overweight?). Table 3 details the means and standard deviations for all questions in each of the six subscales.

Model fit criteria were a normed chi-square of close to three for 7 factors (Table 4). The Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy is 0.93, which is acceptable. The residuals are all small and the overall Root Mean Square Residual (RMSR) is 0.05,0.04, and 0.03 for four factors, five factors, and six/seven factors; respectively, indicating that the factor structure explains most of the correlations (Table 4).

Table 5 reports the rotated Factor Pattern (Standardized Regression Coefficients) for the items in each subscale of the PCOSQ-50. Parallel analysis indicated four or five factors should be retained (Fig. 1). A Scree plot of eigenvalues greater than one (Fig. 2) and the proportion of variance explained 90% for 4 factors, 95% for 5 factors, 97% for 6 factors, and 99% for seven factors (each factor presented 4, 5, 6, or 7 meaningful factors for the 50-item scale). Items pcosqf1, pcosqf2, pcosqf7, pcosqf5, pcosqf4, pcosqb9, and pcosqd9 did not load for any of the factors for the four-factor model. Items pcosq5, pcosq8, and pcosq11 were loaded for more than one factor in the six-factor model.

Parallel analysis for the PCOSQ-50 (n = 935)

Scree plot of eigenvalues for the PCOSQ-50 (n = 935)

Tables 6, 7, 8 and 9 show the intercorrelations and the coefficient alpha reliability. Scale reliability was assessed by calculating a coefficient alpha. Reliability estimates were shown in the diagonal. The results revealed that each reliability exceeded 0.75. The alpha coefficient ranged from 0.89 to 0.97 for 4-factors, 0.86 to 0.97 for 5-factors, 0.87 to 0.97 for 6-factors, and 0.83 to 0.97 for 7-factors. The results indicated that all the correlations are significant among these total scales and subscales. All correlations were positive and range from 0.11 to 0.78 for 4-factors, 0.08 to 0.85 for 5-factors, 0.08 to 0.86 for 6-facotrs, and 0.05 to 0.81 for 7-factors.

Based on the scree plot, model fit, use of all items, and no complex situations, the seven-factor model was identified as the best fit. Table 10 shows each factor, the number of items from the PCOSQ-50, and the chosen label for each factor.

Confirmatory factor analysis (CFA) was performed for the PCOSQ-50 on seven factors (Table 9). The goodness-of-fit for the model was assessed using chi-square statistics of 5547.78 with 1105-degree freedom (P < 0.0001), chi square ratio with degree freedom of 5, RMSEA and SRMSR of 0.06, the normed fit index or NFI of 0.82, the non-normed fit index or NNFI of 0.85, and CFI of 0.85. The results showed that the standardized factor loading was significant for all items for seven factors. The loading was from 0.45 to 0.74,0 .85 to 0.94, 0.62 to 0.92, 0.54 to 0.87, 0.44 to0 .70,0 .68 to 0.80, and 0.79 to 0.84 for factors 1 to 7 respectively. The R-Square was from 0.21 to 0.50, 0.72 to 0.90, 0.38 to 0.86, 0.30 to 0.75, 0.20 to 0.49, 0.46 to 0.64, and 0.63 to 0.71 for factors 1 to 7 respectively (see Fig. 3).

Path diagram for the confirmatory analysis of the 7-factor PCOSQ-50

The exploratory factor analysis revealed that a 7-factor model was a better fit than the current 6-factor model incorporated within the PCOSQ-50. The thematic analysis approach to labeling the seven factors or question groupings (henceforward called domains) yielded the following: hirsutism, fertility, isolation/trepidation, sexual function, self-esteem, emotional, and obesity (see Table 10). Three domain names remained unchanged as they were appropriately descriptive (hirsutism, fertility, sexual function); three domains were relabeled (obesity, self-esteem, emotional). An additional emergent domain was labeled (trepidation/isolation).

The current PCOSQ-50 has a domain comprised of nine questions labeled “Obesity and Menstrual Disorders.” However, only four questions were about obesity concerns; two were about menstrual disorders; two were about comorbidities of hypertension and cancer; and the remaining one was about repetitive visits to doctors. Therefore, exploratory factor analysis suggested developing obesity into a singular category and shifting the two menstrual questions to fertility. Our thematic analysis relabeled this domain by excluding “menstrual disorders” while retaining “obesity.” The remaining questions in this domain used words such as “fear,” and “lack of”, and explored social support issues (e.g.,” In the past 4 weeks, how often have you felt a lack of family support and acceptance of PCOS?” and “In the past 4 weeks, how often have you felt fear of diseases such as diabetes, hypertension, and heart disease?). Thematic analysis of this category resulted in a new label of isolation/trepidation The original PCOSQ-50 also has domains labeled “Psychosocial/Emotional” and “Coping,” which according to thematic analysis, were better described as two domains labeled “Self-Esteem” and “Emotional,” respectively.