Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support.

ABSTRACT:

Background

Patients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the unmet health and informational needs of CHH patients and (iii) assess patient acceptability regarding patient-centered, web-based interventions to bridge shortfalls in care.

Methods

A sequential mixed-methods design was used: first, an online survey was conducted to evaluate health promoting

SUBMITTER: Dwyer AA 

PROVIDER: S-EPMC4059885 | biostudies-literature | 2014 Jun

REPOSITORIES: biostudies-literature