Patient perception of disease burden in diffuse cutaneous systemic sclerosis.

ABSTRACT:

Purpose

Systemic sclerosis is a rare multi-organ autoimmune rheumatic disease, resulting in progressive fibrosis of the skin/internal organs. This study aimed to understand the impact of diffuse cutaneous systemic sclerosis symptoms and disease burden from the patient's perspective.

Methods

This was a mixed methodology, market research study involving ethnography, structured interviews, video diaries, and patient tasks. Patients had been diagnosed with diffuse cutaneous systemic sclerosis for ⩾ 6 months and were recruited via healthcare professionals or patient associations (France, Italy, the United Kingdom, and the United States). Patients filmed short (~15 min) daily video diaries about their lives over 7 days and participated in ethnographic sessions, patient tasks, and

SUBMITTER: Khanna D 

PROVIDER: S-EPMC8922591 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature