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

Julia Spierings*, Cornelia H M van den Ende, Rita M Schriemer, Hein J Bernelot Moens, Egon A van der Bijl, Femke Bonte-Mineur, Marieke P D de Buck, Meeke A E de Kanter, Hanneke K A Knaapen-Hans, Jacob M van Laar, Udo D J Mulder, Judith Potjewijd, Lian A J de Pundert, Thea H M Schoonbrood, Anne A Schouffoer, Alja J Stel, Ward Vercoutere, Alexandre E Voskuyl, Jeska K de Vries-Bouwstra, Madelon C Vonk

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

9 Citations (Web of Science)


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 SSc. The perceived quality of care was rated with a mean score of 3.2 (s.d. 0.5) (range 1.0-4.0). There were no relevant differences between expert and regional centres. The three prioritized process indicators were: good patient-physician interaction (80%), structural multidisciplinary collaboration (46%) and receiving treatment according to SSc guidelines (44%). Absence of disease progression (66%), organ involvement (33%) and digital ulcers (27%) were the three highest rated outcome indicators.

CONCLUSION: The perceived quality of care evaluated in our study was fair to good. No differences between expert and regional centres were observed. Our prioritized process and outcome indicators can be added to indicators suggested by SSc experts in earlier studies and can be used to evaluate the quality of care in SSc.

Original languageEnglish
Pages (from-to)1226-1232
Number of pages7
Issue number6
Early online date20 Sept 2019
Publication statusPublished - Jun 2020


  • systemic sclerosis
  • healthcare organization
  • quality of care
  • quality indicators
  • patients
  • perspective
  • patient-reported outcome measurement
  • SET

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