The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups.

ABSTRACT:

Background

Patients struggling with rare diseases may face challenges caused by care providers being unfamiliar with their condition. The life span of people with rare diseases may be the same as that of healthy people, but their quality of life is different. Patients with chronic pain are constantly looking for ways to mitigate their pain. Pain killers are not a permanent solution. In addition to the medical and nonmedical costs of rare diseases for both patients and health care providers, there is a need for sustainable sources of information that are available to help with pain and improve their quality of life, with the goal of reducing physician visits and hospital admissions.

Objective

This study investigated the challenges that patients with genetic disorders face in

SUBMITTER: Ashtari S 

PROVIDER: S-EPMC9459833 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature