Beyond hormone replacement: quality of life in women with congenital hypogonadotropic hypogonadism.

ABSTRACT:

Objective

Little is known about how women with isolated GnRH deficiency cope with their condition. This study aimed to examine the health and informational needs of women with congenital hypogonadotropic hypogonadism (CHH) and evaluate if their experiences differ from women with more common forms of infertility.

Design

Cross-sectional, multiple methods study using web-based data collection to reach dispersed rare disease patients.

Methods

A community-based participatory research framework was employed to develop an online survey and collect quantitative and qualitative data. Adult women diagnosed with CHH who had received at least one year of hormonal treatment completed the Morisky Medication Adherence Scale, Revised Illness Perception Questionnaire and Zung Self-Rat

SUBMITTER: Dzemaili S 

PROVIDER: S-EPMC5551425 | biostudies-literature | 2017 Aug

REPOSITORIES: biostudies-literature