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

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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-017-0736-3) contains supplementary material, which is available to authorized users.

The burden of disease in pyruvate kinase deficiency: Patients’ perception of the impact on health‐related quality of life

“…28 Whether the cognitive issues reported by the participants in this study are attributable to age, anemia, 29 The sample size used for this study is typical of concept elicitation interview studies. 22,30,31 Achievement of conceptual saturation in this study indicates that the sample size was sufficient to characterize the burden of PK deficiency from the perspective of patients. It also indicates that it is unlikely any comorbidities or misdiagnoses were the cause of concepts such as jaundice that were reported and also appear in other conditions.…”

Determinants of Quality of Life and Satisfaction with Life in Women with Polycystic Ovary Syndrome

“…Women’s health and its determinants are the subject of numerous studies worldwide [ 2 , 5 , 8 , 10 , 11 , 13 , 14 ]. PCOS is a disease with a complex symptomatology and diverse clinical presentations, which significantly affects the patients’ life and functioning [ 2 , 3 , 8 ]. Research shows that PCOS adversely affects women’s quality of life, wellbeing, self-esteem, psychological status, and body image [ 3 , 20 , 21 , 22 , 23 , 24 ].…”

“…Polycystic ovary syndrome (PCOS) is one of the most common endocrinopathies in women of reproductive age. Its etiology is not yet fully understood [ 1 , 2 , 3 ]. In accordance with the Rotterdam criteria, PCOS is diagnosed if two out of the following three findings are present: oligomenorrhea or oligo-ovulation, clinical or biochemical hyperandrogenism, and polycystic ovaries on ultrasound [ 1 , 2 , 4 ].…”

“…Typical PCOS symptoms include oligomenorrhea, hirsutism, obesity, acne, fertility disorders, and emotional or psychological disorders. These symptoms significantly affect the lives of PCOS patients, and in particular their psychological and emotional state, self-perception, quality of life and satisfaction with life [ 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 ].…”

Depression, Sexual Functioning and the Life Satisfaction of Pakistani Women with and without Polycystic Ovary Syndrome

“…Amiri, Tehrani, Esmailzadeh, Tohidi, Azizi and Basirat in 2018 [9] calculated the relationship between PCOS and Sexual function and found that 45.75% of the PCOS women met the criteria for sexual dysfunction. The literature suggests that the physical, medical and psychological symptoms of PCOS significantly affect the quality of life and satisfaction with life of such women [10,11,12,13].…”