Health-related quality of life among adolescents with polycystic ovary syndrome.

OBJECTIVE

To explore health-related quality of life (HRQoL) among adolescents with polycystic ovary syndrome (PCOS).

DESIGN

Qualitative study.

SETTING

Two out-patient gynecology clinics in Yorkshire, England.

PARTICIPANTS

Fifteen young women diagnosed with PCOS were recruited.

METHODS

Semistructured interviews were carried out, transcribed verbatim, and subjected to thematic analysis using NVivo software version 2.0.

RESULTS

A few areas were identified where PCOS had a positive impact upon HRQoL (e.g., improved relationships). However, overall the condition had a negative impact upon HRQoL. Weight problems (in particular the difficulties associated with managing/maintaining weight) and body perceptions appeared to be the most significant contributors to a reduced HRQoL. Menstrual dysfunction, fertility issues, and hirsutism also had adverse affects on emotional well-being, self-perception (including poor body image, self-consciousness, & low self-esteem), social functioning, and sexual behavior. A number of participants described receiving insufficient information from health care professionals (HCPs) and negative experiences in relation to the diagnosis and management of their condition.

CONCLUSION

Overall, PCOS has a negative impact on the HR QoL of adolescent girls with the condition. Emotional and social functioning appeared to be most affected rather than areas of physical functioning. Future research is needed to identify ways to improve communication between adolescents with PCOS and their HCPs, particularly around the diagnosis and potential for infertility. Finally, HCPs need to be more aware of the emotional impact of PCOS upon adolescents' HRQoL and of the potential for poor sexual health through risk-taking behaviors that may occur due to the potential loss of fertility.