ArticleHealth and quality of life outcomes2017
Understanding polycystic ovary syndrome from the patient perspective: a concept elicitation patient interview study.
Article in Health and quality of life outcomes, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
18 citing papers in PubMed, 37 citations in OpenAlex.
- Associations of Ultra-Processed Food Consumption and Night Eating With GI Symptom-Specific Anxiety in Reproductive-Age Women With Polycystic Ovary Syndrome.Food science & nutrition · 2026Article
- TongueNet-GYN: a multimodal deep learning framework for non-invasive gynecological disease screening in digital public health.Frontiers in public health · 2026Article
- Understanding data visualization techniques in qualitative studies used to develop and validate patient-reported outcome measures: a targeted literature review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Review
- Pain in polycystic ovary syndrome: a comprehensive bedside to bench perspective on an underrecognized symptom.Frontiers in pharmacology · 2025Review
- Aplastic Anaemia Disease Burden From the Patient Perspective and Quality of Life in Zimbabwe by A.Journal of blood medicine · 2025Article
- Lack of adequate counseling about pregnancy complications in patients with polycystic ovary syndrome: a cross-sectional survey study.F&S reports · 2024Article
- Assessment of the Validity and Quality of Polycystic Ovarian Syndrome (PCOS) Screening Tools Available for Women Globally: A Systematic Review.Clinics and practice · 2024Review
- The double-edged sword of PCOS and gender: exploring gender-diverse experiences of polycystic ovary syndrome.International journal of transgender health · 2024Article
- Rethinking the Terminology: A Perspective on Renaming Polycystic Ovary Syndrome for an Enhanced Pathophysiological Understanding.Clinical medicine insights. Endocrinology and diabetes · 2024Article
- Polycystic ovary syndrome and chronic pain among females and individuals of childbearing age: A scoping review.SAGE open medicine · 2024Article
- Exploring the Experiential Journey of Women with PCOS Across the Lifespan: A Qualitative Inquiry.International journal of women's health · 2024Article
- Challenges in diagnosis and health care in polycystic ovary syndrome in Canada: a patient view to improve health care.BMC women's health · 2023Article
- Evaluation of Bodily Pain Associated with Polycystic Ovary Syndrome: A Review of Health-Related Quality of Life and Potential Risk Factors.Biomedicines · 2022Review
- What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada.BMC women's health · 2022Article
- Are patients with polycystic ovary syndrome more prone to irritable bowel syndrome?Endocrine connections · 2022Article
- Exploring the use of health and wellbeing measures during pregnancy and the first year following birth in women living with pre-existing long-term conditions: qualitative interviews with women and healthcare professionals.BMC health services research · 2021Article
- Quality of Life and Emotional States of Depression, Anxiety and Stress in Adolescents with Polycystic Ovary Syndrome: A Cross-Sectional Study.Psychology research and behavior management · 2020Article
- Determinants of Quality of Life and Satisfaction with Life in Women with Polycystic Ovary Syndrome.International journal of environmental research and public health · 2018Article
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe aim of this study was to explore the need for a new disease-specific patient reported outcome (PRO) measure for use in clinical trials of drugs designed to target the underlying causes of polycystic ovary syndrome (PCOS), and in the process contribute to our understanding of the symptoms and impacts that define the patient experience with PCOS.
methodsSemi-structured interviews were conducted in 20 women diagnosed with PCOS according to the Rotterdam criteria who had not menstruated in the previous month. The relative importance of PCOS symptoms and impact concepts to patients was determined by analyzing the frequency of their expression in the interview transcripts. These insights were compared to clinicians' perceptions of PCOS.
resultsPain- and discomfort-related symptoms accounted for the highest proportion (27.6%) of the 735 patient expressions, although clinicians did not consider pain to be important to patients with PCOS. The most frequently expressed individual symptoms were cramping (70% of patients; 14.7% of concepts), irregular menstruation (95% of patients; 12.2% of concepts), facial hair growth (75% of patients; 10.6% of concepts), heavy bleeding (70% of patients; 8.8% of concepts), infertility (70% of patients; 5.4% of concepts), and bloating (60% of patients; 5.2% of concepts). Cramping, heavy bleeding, and bloating were not identified by clinicians as being important to patients with PCOS. The impacts most frequently reported by patients with PCOS related to emotional well-being (e.g. anxiety/stress) and coping behaviors (e.g. acne medication, hair removal).
conclusionsThe only validated PCOS-specific PRO, the PCOSQ, does not capture some key PCOS symptoms and impacts expressed by patients with PCOS, most notably those related to pain and discomfort, bleeding intensity and coping behaviours. Furthermore, some key PCOS symptoms may be under-recognized in the clinic.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.