The patient journey to diagnosis and treatment of autoinflammatory diseases.

ABSTRACT:

Background

Limited data are available on the experiences of patients with autoinflammatory diseases (AIDs) and their families along the path to diagnosis and treatment. We sought to describe these experiences in patients with AIDs including tumor necrosis factor receptor-associated periodic syndrome (TRAPS), mevalonate kinase deficiency/hyperimmunoglobulin D syndrome (MKD/HIDS), and familial Mediterranean fever (FMF).

Methods

Ninety-minute, semi-structured qualitative interviews and 5-day written/video diaries were used to gather information on the experiences of patients with AIDs and their families.

Results

Twelve families of patients from the US (TRAPS [n = 4], MKD/HIDS [n = 5], FMF [n = 5]) participated in this study from August to November 2015. The study include

SUBMITTER: Hausmann JS 

PROVIDER: S-EPMC6127942 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature