Dataset Information

Understanding polycystic ovary syndrome from the patient perspective: a concept elicitation patient interview study.

ABSTRACT: The 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.Semi-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.Pain- 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).The 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.

SUBMITTER: Martin ML

PROVIDER: S-EPMC5562990 | biostudies-literature | 2017 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Understanding polycystic ovary syndrome from the patient perspective: a concept elicitation patient interview study.

Martin Mona L ML Halling Katarina K Eek Daniel D Krohe Meaghan M Paty Jean J

Health and quality of life outcomes 20170818 1

<h4>Background</h4>The 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.<h4>Methods</h4>Semi-structured interviews were conducted in 20 women diagnosed with PCOS according to the Rotterdam criteria who h ...[more]

PMID: 28821294

Similar Datasets

Project description:BackgroundPolycystic ovary syndrome is the most common endocrine disorder in women of reproductive age. Women with this syndrome may have infrequent menstrual periods or amenorrhea and excess androgen levels. The ovaries develop numerous small follicles and fail to ovulate on a regular basis, with subsequent subfertility in those women that wish to conceive.The etiology of polycystic ovary syndrome is unclear. Early diagnosis and treatment may reduce the risk of long-term complications such as type 2 diabetes and heart disease.ObjectivesTo assess the knowledge and attitude of university students towards polycystic ovary syndrome at two universities in the north of Jordan.Methodology: This is a cross-sectional online survey that polled female students at two universities in the north of Jordan. The main outcome measures included average polycystic ovary syndrome awareness score, predictors of high awareness scores, and sources of information.ResultsFormal diagnosis of polycystic ovary syndrome was reported by 29.9% of the 1182 students, the average polycystic ovary syndrome awareness score was M = 11.59 (SD = 4.95). Being a 6th and 5th year college student were the strongest independent predictors for recognizing the term polycystic ovary syndrome, in addition to be a student in the majors of veterinary medicine, nursing, pharmacy, or dentistry. Age was a significant predictor of polycystic ovary syndrome awareness score. Being investigated for, or being diagnosed with polycystic ovary syndrome were significant predictors of higher scores. Body mass index was a weak predictor of polycystic ovary syndrome awareness. Participants who reported to have hirsutism, acanthosis nigricans, or acne scored significantly higher than others.Healthcare professionals were the most common source of information reported by participants. Lectures were most effective in increasing awareness score but were poorly utilized outside the curriculum.ConclusionAlthough students in this study demonstrated a satisfactory level of polycystic ovary syndrome awareness and were more likely to seek information from healthcare professionals, this level of awareness should spread-out to other segments of the population.

Dataset Information

Understanding polycystic ovary syndrome from the patient perspective: a concept elicitation patient interview study.

Publications

Understanding polycystic ovary syndrome from the patient perspective: a concept elicitation patient interview study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets