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Evaluating patient experience in a cystic fibrosis centre using a disease-specific patient satisfaction questionnaire

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Abstract

Medical care for persons with chronic diseases like cystic fibrosis (CF) is provided by multi-professional teams. We assessed the patients’ perspective of care by reporting the results of two consecutive patient satisfaction surveys performed within a 2-year interval at our CF centre. The newly developed, disease-specific questionnaire for parents and adults had 104 items with up to 6 response categories each. For data analysis, responses were dichotomized into a problem score with 0 % as the ideal result. Adolescents were surveyed using a different questionnaire. Seventy-six and 89 respondents, respectively, took part in the 2009 and 2011 surveys (response rates: 72 to 84 %). In 2009, the ideal problem score of 0 % was reported for 18 and 20 % of all items in adults and parents, respectively. Thirteen items had a problem score >30 %. After the whole team had implemented quality improvement measures, the 2011 survey showed a >10 % decrease in problem scores for 11 and 21 % of items in the adults and parents groups, respectively. Adolescents also reported better experiences in 2011 than in 2009.

Conclusion: Exploring the patients’ perspectives aids to identify strengths and weaknesses and helps to provide patient-centred care, which is important for persons with chronic illness.

What is Known:

• Patients’ views are important if health professionals aim at providing patient-centred care.

• To evaluate the patients’ and parents’ perspective of care provided by specialized cystic fibrosis (CF) centres, a disease-specific questionnaire was developed and used for a nationwide survey in over 2000 parents and adult patients from 56 German CF centres.

What is New:

• In this single-centre experience, the questionnaire helped to identify and analyze strengths and weaknesses of our centre’s performance, enabled benchmarking and the introduction of specific quality improvement measures.

• After we had redesigned policies and procedures, the results of the second survey 2 years later showed progress in several areas of care, indicating that the questionnaire can serve as a tool for providing patient-centred care as well as for quality improvement.

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Abbreviations

CF:

Cystic fibrosis

FEV1:

Forced expiratory volume in 1 s

SD:

Standard deviation

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Acknowledgments

We thank all patients and parents who participated in the two surveys. The authors are obliged to all members of the staff who recruited patients for the project. We also acknowledge the generous support by CF-TEAM Forschung, Innsbruck, Austria, and by TILAK Landeskrankenanstalten Innsbruck, Qualitätsmanagement. The development of the questionnaire and the nationwide survey in Germany were supported by an educational grant from Mukoviszidose e.V., the German CF Association.

Author’s contributions

Helmut Ellemunter (HE), Katja Stahl (KS), Ulrike Smrekar (US) and Gratiana Steinkamp (GS) participated in developing the patient experience and satisfaction survey instrument. HE and US recruited patients and parents for the surveys and introduced changes in centre policies.

KS analysed the data and wrote the survey reports.

HE, US and GS interpreted the survey results.

GS wrote the draft manuscript, and HE, KS and US edited the manuscript.

All authors approved the final version of the manuscript.

Conflict of interest

HE declares no conflict of interest.

US declares no conflict of interest

GS declares no conflict of interest.

KS is the head of Research and Product Development at the Picker Institute Germany.

Author information

Authors and Affiliations

  1. CF Centre, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria

    Helmut Ellemunter, Ulrike Smrekar & Gratiana Steinkamp

  2. Picker Institut Deutschland gGmbH, Kieler Str. 2, 22769, Hamburg, Germany

    Katja Stahl

  3. Department of Medical Psychology, Medical University of Innsbruck, Schöpfstraße 23a, 6020, Innsbruck, Austria

    Ulrike Smrekar

  4. Clinical Research, Reutzstr. 1, 19055, Schwerin, Germany

    Gratiana Steinkamp

  5. Division of Cardiology, Pulmonology, Allergology, Cystic Fibrosis, Medical University of Innsbruck, Anichstrasse 35, 6020, Innsbruck, Austria

    Helmut Ellemunter

Authors
  1. Helmut Ellemunter
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  2. Katja Stahl
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  3. Ulrike Smrekar
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  4. Gratiana Steinkamp
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Corresponding author

Correspondence to Helmut Ellemunter.

Additional information

Communicated by Jaan Toelen

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Ellemunter, H., Stahl, K., Smrekar, U. et al. Evaluating patient experience in a cystic fibrosis centre using a disease-specific patient satisfaction questionnaire. Eur J Pediatr 174, 1451–1460 (2015). https://doi.org/10.1007/s00431-015-2545-1

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  • DOI: https://doi.org/10.1007/s00431-015-2545-1

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