Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome

Melanie Gibson-Helm, Helena Teede*, Andrea E Dunaif, Anuja Dokras

*Corresponding author for this work

Research output: Contribution to journalReview article

48 Citations (Scopus)

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 languageEnglish (US)
Pages (from-to)604-612
Number of pages9
JournalJournal of Clinical Endocrinology and Metabolism
Volume102
Issue number2
DOIs
StatePublished - Feb 1 2017

Fingerprint

Polycystic Ovary Syndrome
Delayed Diagnosis
Odds Ratio
Confidence Intervals
Health
Self-Help Groups
Menstrual Cycle
Self Care
North America
Infertility
Early Diagnosis
Cross-Sectional Studies
Websites
Outcome Assessment (Health Care)

ASJC Scopus subject areas

  • Endocrinology, Diabetes and Metabolism
  • Biochemistry
  • Endocrinology
  • Clinical Biochemistry
  • Biochemistry, medical

Cite this

Gibson-Helm, Melanie ; Teede, Helena ; Dunaif, Andrea E ; Dokras, Anuja. / Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome. In: Journal of Clinical Endocrinology and Metabolism. 2017 ; Vol. 102, No. 2. pp. 604-612.
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title = "Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome",
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.",
author = "Melanie Gibson-Helm and Helena Teede and Dunaif, {Andrea E} and Anuja Dokras",
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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 E; Dokras, Anuja.

In: Journal of Clinical Endocrinology and Metabolism, Vol. 102, No. 2, 01.02.2017, p. 604-612.

Research output: Contribution to journalReview article

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 E

AU - Dokras, Anuja

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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.

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