Original Article| Volume 22, ISSUE 1, P172-178, January 2023

Development and outcomes of a patient driven cystic fibrosis quality of care improvement project


      • The organisation and implementation of a quality assessment and improvement strategy is feasible for a patient organisation.
      • The overall performance of CF centers in the Netherlands is satisfactory from the patient perspective, with paediatric centers performing slightly higher.
      • Substantial improvement was reached within two years, by implementation of the recommendations given by the patient organisation.


      The Dutch CF Foundation (NCFS) developed a quality improvement program, to assess and improve quality of care in all CF centers in The Netherlands. Criteria to assess quality of care from the patient perspective were defined, and quality of care was assessed by patients via online surveys and site visits. Recommendations were addressed to all centers to improve quality of care. Most recommendations were related to communicational issues. All centers were given the quality mark of the patient organisation, although two of them needed extra time to meet the lower limit of the core set of criteria. After two years, over 75 % of the recommendations given to the centers were fully or partly implemented, showing a high efficacy of the program.


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