Abstract
Context: 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.
| Original language | English |
|---|---|
| Pages (from-to) | 604-612 |
| Number of pages | 9 |
| Journal | Journal of Clinical Endocrinology and Metabolism |
| Volume | 102 |
| Issue number | 2 |
| DOIs | |
| Publication status | Published - 1 Feb 2017 |
Cite this
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Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome. / Gibson-Helm, Melanie; Teede, Helena; Dunaif, Andrea; Dokras, Anuja.
In: Journal of Clinical Endocrinology and Metabolism, Vol. 102, No. 2, 01.02.2017, p. 604-612.Research output: Contribution to journal › Review Article › Research › peer-review
TY - JOUR
T1 - Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome
AU - Gibson-Helm, Melanie
AU - Teede, Helena
AU - Dunaif, Andrea
AU - Dokras, Anuja
PY - 2017/2/1
Y1 - 2017/2/1
N2 - Context: 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.
AB - Context: 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.
UR - http://www.scopus.com/inward/record.url?scp=85012060085&partnerID=8YFLogxK
U2 - 10.1210/jc.2016-2963
DO - 10.1210/jc.2016-2963
M3 - Review Article
VL - 102
SP - 604
EP - 612
JO - Journal of Clinical Endocrinology and Metablism
JF - Journal of Clinical Endocrinology and Metablism
SN - 0021-972X
IS - 2
ER -