Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton, Victoria 3168, Australia.
Polycystic ovary syndrome (PCOS) is a complex, chronic, and under-recognized disorder. Diagnosis experience may have lasting effects on well-being and self-management.
Objective
To investigate PCOS diagnosis experiences, information provided, and concerns about PCOS.
Design
Cross-sectional study using an online questionnaire.
Setting
Recruitment via support group web sites in 2015 to 2016.
Participants
There were 1385 women with a reported diagnosis of PCOS who were living in North America (53.0%), Europe (42.2%), or other world regions (4.9%); of these, 64.8% were 18 to 35 years of age.
Main Outcome Measures
Satisfaction with PCOS diagnosis experience, satisfaction with PCOS information received at the time of diagnosis, and current concerns about PCOS.
Results
One-third or more of women reported >2 years (33.6%) and ≥3 health professionals (47.1%) before a diagnosis was established. Few were satisfied with their diagnosis experience (35.2%) or with the information they received (15.6%). Satisfaction with information received was positively associated with diagnosis satisfaction [odds ratio (OR), 7.0; 95% confidence interval (CI), 4.9 to 9.9]; seeing ≥5 health professionals (OR, 0.5; 95% CI, 0.3 to 0.8) and longer time to diagnosis (>2 years; OR, 0.4; 95% CI, 0.3 to 0.6) were negatively associated with diagnosis satisfaction (independent of time since diagnosis, age, and world region). Women's most common concerns were difficulty losing weight (53.6%), irregular menstrual cycles (50.8%), and infertility (44.5%).
Conclusions
In the largest study of PCOS diagnosis experiences, many women reported delayed diagnosis and inadequate information. These gaps in early diagnosis, education, and support are clear opportunities for improving patient experience.
PMID 27906550 27906550 DOI 10.1210/jc.2016-2963 10.1210/jc.2016-2963
Cite this article
Gibson-Helm, M., Teede, H., Dunaif, A., & Dokras, A. (2017). Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome. The Journal of clinical endocrinology and metabolism, 102(2), 604-612. https://doi.org/10.1210/jc.2016-2963
Gibson-Helm M, Teede H, Dunaif A, Dokras A. Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome. J Clin Endocrinol Metab. 2017;102(2):604-612. doi:10.1210/jc.2016-2963
Gibson-Helm, M., et al. "Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome." The Journal of clinical endocrinology and metabolism, vol. 102, no. 2, 2017, pp. 604-612.
Hyperandrogenism is a hallmark of polycystic ovary syndrome (PCOS) in women with irregular menses, yet the relationship between androgens and ovarian dysfunction remains poorly understood in eumenorrheic women. The objective of the study was to evaluate whether sporadic anovulation was associated with higher T and anti-müllerian hormone (AMH; marker of ovarian follicle count) concentrations in eumenorrheic women.
This was a prospective cohort study from 2005 to 2007.
The study was conducted at the University of Buffalo in western New York state. A total of 259 eumenorrheic women without a self-reported history of infertility, PCOS, or other endocrine disorder participated in the study. Total T and AMH were measured five to eight times per cycle for one (n = 9) or two (n = 250) cycles per woman (n = 509 cycles) with timing of menstrual cycle phase assisted by fertility monitors. Anovulatory cycles were defined biochemically by progesterone and LH concentrations. Repeated-measures ANOVA was conducted on log-transformed data with adjustment for age. Compared with ovulatory cycles (n = 467), sporadic anovulatory cycles (n = 42) had marginally higher total and significantly higher free T [mean 23.7 ng/dL (95% confidence interval [CI] 21.4-26.3) vs 21.6 ng/dL (95% CI 20.9-22.3), P = .08, and 0.36 ng/dL (95% CI 0.33-0.40) vs 0.32 ng/dL (95% CI 0.31-0.33), P = .02, respectively] during menses and also throughout the luteal phase (P < .01 for all). Women with higher T had elevated AMH concentrations, increased reporting of a history of acne requiring medical treatment, but not increased hirsutism. Mechanisms of androgen-related ovulatory dysfunction that characterize PCOS in women with menstrual disturbances may occur across a continuum of T concentrations, including in eumenorrheic women without clinical hyperandrogenism.
To assess patient experiences using a Shared Decision-Making (SDM) Tool for fertility awareness-based methods (FABMs) of family planning. The study employed a prospective crossover design to evaluate impact of the SDM tool compared to usual practice when discussing FABMs with patients. Patients completed preand post-office visit surveys and an online survey six months later. The primary outcomes evaluated the effect of the SDM tool on patient satisfaction and FABM continuity of use rates. There was no significant difference in likelihood of changing family planning methods immediately after the office visit; however, by six months a significantly larger proportion of patients had started or changed FABMs in the experimental group (52%, 34/66) compared to the control group (36%, 24/66) (p = 0.04). Significantly more patients who used the tool and changed their FABM after their visit reported increased satisfaction with their FABM compared to control (50% vs. 17%, p = 0.022). Use of the SDM tool increased persistent use of and satisfaction with chosen FABMs at six months. The novel SDM tool can enhance patients' understanding and facilitate the selection of a more suitable method leading to increased satisfaction.
To assess the impact of a Shared Decision-Making (SDM) tool for fertility awareness-based methods (FABMs) of family planning. Clinicians familiar with at least one FABM were randomly invited to participate in a prospective cross-over study to compare usual practice to the use of the SDM tool when discussing FABMs with patients. Patients completed surveys preand post-office visit and six months later. The primary outcome explored the effect of online education on use of the SDM tool on clinicians' knowledge of FABMs. Of 278 clinicians contacted, 54% could not be reached, and 15% did not provide women's health services. The 26 clinicians enrolled were experienced, with more than half recommending FABMs for ≥10 years, and 73% recommending more than one FABM to patients. Knowledge scores significantly improved after online training and use of the SDM tool (baseline mean score = 9.54 (scale of 0-12); post-training mean score = 10.73, p < 0.002). Education about FABMs and training on use of the SDM tool improved knowledge scores even among an experienced cohort of clinicians. The novel SDM tool can better equip clinicians to meet the rising patient interest in FABMs.
Evidence-based, nonbiased, counseling on contraceptive options, followed by shared decision-making, is key in facilitating reproductive justice in a diverse population. An estimated 3% of contraceptive users in the United States use fertility awareness-based methods (FABMs) for contraception, and demand for these methods is increasing. FABMs can be a highly effective form of family planning when used in accordance with evidence-based protocols. They are preferred by some patients due to medical contraindications to hormonal contraceptives, lack of side effects, religious convictions, preference to avoid hormones or contraceptive devices, improved body literacy, or a combination of the above. FABMs are infrequently covered in medical school curricula and are often perceived by physicians to be of low efficacy. There is an opportunity for improvement of physicians' evidence-based knowledge of FABMs, which has the potential to improve patient understanding of and access to the full menu of family planning options. A self-administered, cross-sectional survey was distributed to assess physician knowledge and opinions of FABMs by key university contacts. Univariate and bivariate statistics were calculated for close-ended questions and responses to open-ended questions were analyzed for common themes. A total of 79 participants completed the entire survey. Another 11 submitted partially completed surveys. For completed surveys, questions assessing knowledge of key concepts underlying FABMs, performance by specialty was 55% correct for OB/GYN (n = 16), 55% (n = 47) correct for family medicine, 36% (n = 10) correct for internal medicine, and 35% (n = 6) correct for pediatrics. Negative, neutral, mixed, and positive opinions related to FABMs were represented. There are opportunities to improve physicians' evidence-based knowledge of FABMs; this may improve patient-centered contraceptive care.