Patient's experiences with the care for juvenile idiopathic arthritis across Europe.

ABSTRACT:

Background

To assess the views of juvenile idiopathic arthritis (JIA) patients and their parents on the care and treatment they receive in referral pediatric rheumatology centers throughout Europe.

Methods

In a collaboration between physicians and patient associations, a questionnaire was developed, covering various domains of JIA care, including demographics, diagnosis, referrals to various health care professionals, access to pain and fatigue management and support groups, information they received about the disease and awareness of and participation in research. The questionnaire was translated and distributed by parent associations and pediatric rheumatologists in 25 countries, 22 of which were European. After completion the replies were entered on the PRINTO website. Re

SUBMITTER: van Dijkhuizen EHP 

PROVIDER: S-EPMC5806356 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature