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

Health and Quality of Life Outcomes

Research

Meaghan Krohe¹  Daniel Eek²  Katarina Halling²  Mona L. Martin³  Jean Paty⁴ 

[1] Adelphi Values, 7th Floor, 290 Congress St, 02210, Boston, MA, USA;AstraZeneca Gothenburg, Pepparedsleden 1, 431 83, Mölndal, SE, Sweden;Health Research Associates, 6505 216th St SW, Mountlake Terrace, 98043, Seattle, WA, USA;Quintiles, 8 Skyline Dr, Hawthorne, 10532, New York, NY, USA;

关键词: Concept elicitation;    Impacts;    Patient perspective;    Polycystic ovary syndrome;    Qualitative interviews;    Symptoms;    Unmet need;   

DOI  :  10.1186/s12955-017-0736-3

 received in 2016-03-29, accepted in 2017-08-07,  发布年份 2017

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© The Author(s). 2017