Treatment pathways traversed by polycystic ovary syndrome (PCOS) patients: A mixed-method study.

Globalization and industrialization have drastically changed the lifestyle of people leading to the emergence of novel health issues. Polycystic ovary syndrome (PCOS) is one such endocrine condition that has seen a sharp rise worldwide in recent decades. In India, the reported prevalence of PCOS among women of the reproductive age group is 3.7–41% [ 1 – 3 ]. A hormonal imbalance is responsible for most of the signs and symptoms of PCOS, e.g., irregular menstrual cycles, obesity, hyperandrogenism, hirsutism, acne, alopecia, hyperinsulinemia, insulin resistance, and reduced fertility [ 4 , 5 ]. To get relief from these, patients often consult gynecologists, endocrinologists, dermatologists, dieticians, and psychologists, etc. [ 6 ]. Many women suffering from PCOS have reported dissatisfaction with the treatment and information provided by these experts [ 6 – 8 ]. Timely management and provision of optimum knowledge about PCOS may help to improve treatment satisfaction and psychological wellbeing in the patients [ 6 , 8 – 11 ]. This will facilitate the active involvement of the patients in their treatment. It will also enhance the quality of doctor-patient interactions [ 12 ]. Any delay in diagnosis and treatment of PCOS can increase the risk of its long-term consequences with adverse effects on the quality of life (QoL) of the patients [ 13 ]. Recent international evidence-based guidelines for assessing and managing polycystic ovary syndrome have also highlighted the need to improve the QoL aspect of PCOS [ 14 ]. Usually, the medical perspective dominates the work of researchers. Hence, not much is known about the treatment-seeking behavior of PCOS patients. Very few studies have explored the patients’ experiences and perspectives regarding PCOS treatment [ 10 , 13 , 15 ]. Through this study, we aim to explore the treatment-seeking pathways traversed by women with PCOS and elicit their behavior, experiences, and perspectives regarding it. This will help answer the research questions as to how informed are the women with PCOS about their condition and from where they receive the information; what coping strategies they follow, what barriers they face; what are their views and experiences about the quality of care available for them? And, can we synthesize a treatment pathway from their responses?

Overall, 372 participants were contacted. Of them, 59 were not willing to participate, and 38 were not eligible. Participants were mostly young (mean age—24.05 years). The mean weight was 66.78 Kg. Respondents had a mean waist circumference of 94.62 cm. The mean waist to hip ratio was also high (0.92). The average BMI was 27.13 kg/m2. Most (79%) of the participants were overweight. A majority (72%) were under or postgraduates; 47.6% were students, and 65.1% were unmarried. A majority (77.1%) belonged to an upper class or upper-middle class. Respondents were diagnosed with PCOS at an average age of 21.4 (SD 4.7) years. Most (76%) of the study participants were diagnosed between 16–25 years of age. Overall, 112 study participants were diagnosed with PCOS during the preceding year; 14.2% were diagnosed more than five years ago ( Table 1 ). * Only 3 went to upper primary school # BG Prasad socioeconomic classification for 2016. Income (per capita monthly income) ## 23 subjects were in category lower middle class, while 5 subjects were in lower class category □ In others, category 5 were Muslims and 1 Christian °One subject was married but separated Many (123; 44.7%) respondents had no information regarding PCOS. For the remaining 152 (55.3%) respondents, the internet was the main source of information in 103 (37.5%) cases. Only 25 (9.1%) study participants received information regarding PCOS from doctors. Newspaper, magazine, and TV were the sources of information for only eight participants. Only sixteen girls obtained information from family/friends. Of the respondents who delayed treatment-seeking, many (85, 44.7%) considered missing the menstrual cycle as normal; the second main reason for the delay, as told by 75 (39.5%) of the patients, was that they would get some relief whenever they planned to consult a doctor. Few (10; 5.3%) women reported a lack of time, and 4.2% were shy of taking the treatment. Only 5 (2.6%) were scared of consultation. Another 5 (2.6%) said lack of money was the reason for not seeking early treatment. Two to three health care agencies were consulted by 139 (50.5%) of respondents, while 39 (14.2%) consulted only one agency. Four agencies were consulted by 51 (18.5%) patients and more than four agencies were consulted by 46 (16.7%) of patients. Fig 2 shows the switching pattern between various HCAs by females with PCOS. Overall, 39 of the 275 respondents did not consult another HCA and came directly to PGIMER. After consultation with the first agency, 236 patients went to a second agency. The main shift (66) at this stage was from private Allopathic HCA (AP) to government Allopathic HCA (AG). Some patients also switched from private and government Allopathic HCA (9+23 = 32) to Indigenous therapies (IT) and vice versa. Similarly, the third HCA was consulted by 169 patients (67 did not continue further). Here also, 39 subjects switched from private Allopathic HCA (AP) to government Allopathic HCA (AG); Some patients switched from private and government Allopathic HCA (15+18 = 33) to Indigenous therapies (IT) and vice versa (19+9 = 28). Irrespective of the switching among various HCAs, Allopathy was the preferred choice of treatment, followed by indigenous therapies (Ayurveda and Homeopathy). Few also opted for diet consultation, yoga & meditation. Out of all the HCAs consulted at different time points, the private Allopathy agencies were preferred for the first consultation. Subsequently, public/government allopathic agencies were selected. The majority of the Ayurvedic, homeopathic, and others health care agencies consulted were private. The median treatment time lag between the onset of 1st symptom and 1st health care agency consulted was 3 months (range = 1 week to 84 months). The average treatment duration was 3 months. The majority of the respondents (68.0%) consulted first HCA as advised by family or relatives. Many (34.2%) of the respondents found the first treatment to be effective. More than 60% of respondents reported the treatment to be moderate to very expensive. Themes and codes / sub-themes extracted from treatment-seeking related verbatim responses of the participants are depicted in Table 2 . The experiences and narratives shared by the respondents were collated to come to these findings and help the authors to conceptualize pathways to treatment traversed by PCOS patients ( Fig 3 ). Five major factors emerged from this data, which seemed to interplay and decided the course of the PCOS treatment pathway followed by the patients, i.e., 1. Individual Factors–Age, education, socioeconomic status, knowledge about disease, symptoms, and compliance. 2. Distress Factors–Perceived sign and symptom severity, peer/family/society reactions to the signs and symptoms, treatment efficacy, fear of treatment. 3. Health System Factors–Screening, referrals, medication, a doctor-patient relationship. 4. Social factors–Family, friends, relatives, and peers and 5. Economic factors–Economic status, treatment, and investigation expenses.

This study suggests that women with PCOS faced difficulties while traversing the treatment pathways. Despite taking treatment, they were ignorant about their condition. They were dependent on the internet as their main source of information. There was an average delay of 3 months before seeking treatment. The trigger to initiating treatment was usually distressed over the body and physiological changes. They were not satisfied with the treatment received. PCOS routine treatment was perceived to be expensive and not very effective. Multiple health agencies consultation and frequent switching of therapies were common. Allopathy was the preferred agency of treatment. Overall, the treatment pathways opted by PCOS patients depends on a combination of factors, e.g., individual distress, health-system related issues, and social-economic circumstances. The findings provide an empirical basis on points to focus on for building better coping strategies for managing the condition. Physicians and health care agencies should abide by the treatment guidelines. They should empower PCOS patients for self-care. They should address their concerns (related to disease, therapy, body image, stress, etc.) and individualize the PCOS management goals. Easy to understand information based on recommended guidelines must be provided to them.

A concurrent mixed method triangulation study [ 16 ] was conducted in the Gynecology out-patient department (OPD) of Post Graduate Institute of Medical Education and Research (PGIMER), Chandigarh, India, from August 2016 to January 2018. The PCOS patients visiting the Gynecology OPD were referred to a separate counseling room after diagnosis and prescription. The patients were informed about the study, and willing participants were recruited after checking for inclusion and exclusion criteria ( Fig 1 ). Family-oriented counseling services on a healthy diet and lifestyle modification were provided to the patients visiting the room, irrespective of their recruitment in the study [ 17 ]. Women from different socio-economic statuses and states visit the routine Gynecology OPD for treatment. Out of these, women aged 18–40 years diagnosed with PCOS (Rotterdam criteria) [ 18 ] were eligible for inclusion in the study. Women with hyper or hypothyroidism, prolactemia, or any other co-morbidity (like diabetes, cardiovascular disease, pulmonary disease, endometriosis) or pregnancy were excluded from the study. A treatment-seeking behavior questionnaire was devised and used to gather quantitative information from the subjects on demographics, anthropometric measurements, PCOS awareness status, source of obtaining information, health service utilization rate and switching pattern, treatment-lag, decision making in seeking health care and choosing health agency, barriers to seeking treatment, opinions on treatment satisfaction and expenditure incurred, etc. The primary response variable was PCOS awareness status, and the other responses were secondary variables. For the qualitative data, face-to-face, in-depth interviews were conducted in the presence of the family escorts of respondents. Semi-structured open-ended questions were used to gather relevant data while leaving scope for the generation of additional themes. The topics covered to understand the coping strategies were ‘How was PCOS diagnosed,’ ‘Reasons for treatment delays,’ ‘Treatment received,’ ‘Experiences related to treatment,’ ‘Choosing apex institute like PGIMER for treatment,’ ‘Social support system for seeking help,’ and ‘Understanding of PCOS and experiences of obtaining information.’ The questionnaire was developed after a thorough literature review. It was piloted with eight women before its use in the main study. The interviewer, a Ph.D. research scholar, was trained to conduct qualitative interviews. Consolidated criteria for reporting qualitative research (COREQ) guidelines were followed [ 19 ]. The questionnaire was administered in the local language (Hindi), and responses were translated to English. The interviews lasted from 20 to 45 min. For the quantitative survey, the calculated sample size was 256, which was enhanced to 275 to cover non-response (alpha 0.05 and power 80%, p = 0.20) [ 6 ]. The precision (effect size) was taken as 5%. To study the qualitative aspect, a nested subsample (n = 62) of highly distressed and or vocal respondents were purposively selected, who had the time to spare for an interview with a willingness to share their experiences. The interviews were continued till saturation, i.e., no new codes emerged [ 20 ]. This sample is representative of larger PCOS population visiting tertiary care clinical settings. SPSS 23.0 (IBM, USA) and Microsoft Excel were used for analyzing quantitative data. The categorical data were presented as count and proportions, and continuous data were calculated as mean ± standard deviation (SD) or median (minimum-maximum). Kolmogorov-Smirnov test was done to find the normality of continuous data. The frequency of Health Care Agencies (HCAs) consulted at each visit gave the HCAs utilization rate. The HCAs consulted by respondents for treatment were categorized as Allopathy government (AG), Allopathy private (AP), and indigenous therapies (IT). Indigenous treatments include Ayurveda, Homeopathy, diet consultation, yoga & meditation. Sequential switching among the Health Care Agencies (HCAs) was the change in the HCA or the treatment provider from the previous consultation to the next. The respondents who shifted from a particular HCA to another were coded and counted. For the qualitative data, Excel spreadsheets (Microsoft Excel 2003) was used for data management only. Codes/themes were entered in a spreadsheet after developing them on paper (manually). The interviews were conducted in the local language (Hindi). The subjective responses were noted as field notes and verbatim, transcribed, and later translated into English. Framework analysis was performed using a conceptual framework, as given in S1 Fig . It covers the key determinants to understand the treatment-seeking behavior for PCOS. The analysis steps involved familiarization, identification of thematic framework, coding, charting and mapping & interpretation. Using the inductive approach, the codes with similar meanings were grouped under subcategories. Few prior themes were used. New emerging themes were allocated appropriately. The first author and the corresponding author independently read the interviews and regularly met to discuss the interpretations to reach a consensus on the codes and themes [ 21 – 24 ]. For the mixed-method analysis, the results from the qualitative and quantitative findings were integrated by triangulation during the interpretation stage. Both the findings were side-by-side compared and contrasted to identify the patterns, associations, and concepts that agree or converge to build the pathways to treatment traversed by PCOS patients. Triangulation is a validity procedure where different methods are used to measure the same outcome variable. In our study, the outcomes were analyzed separately, but at the time of interpretation, these were examined for corroboration of results. Approval was granted by PGIMER institute’s ethics committee, Ref No. INT/IEC/2015/616, dated 13.10.2015. Informed written consent was obtained from all the participants recruited in the study.

(DOCX) Click here for additional data file. It was developed from a literature review of the determinants affecting treatment-seeking behavior. (TIF) Click here for additional data file. It contains both qualitative and quantitative data set along with the variable coding scheme. (XLSX) Click here for additional data file.