How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?

ABSTRACT:

Objectives

To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators.

Methods

An online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals.

Results

Six hundred and fifty patients (mean age 59 years, 75% women, 32% limited cutaneous SSc, 20% diffuse cutaneous SSc) completed the questionnaire. Mean time to diagnosis was 4.3 years (s.d. 6.9) and was longer in women compared with men (4.8 (s.d. 7.3) vs 2.5 (s.d. 5.0) years). Treatment took place in a SSc expert centre for 58%, regional centre for 29% or in both for 39% of patients. Thirteen percent of patients was not aware of whether their hospital was specialized in

SUBMITTER: Spierings J 

PROVIDER: S-EPMC7244783 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature