Outcomes that matter most to burn patients: A national multicentre survey study in the Netherlands

I. Spronk*, D. van Uden, L. van Dammen, M. E. van Baar, M. Nieuwenhuis, A. Pijpe, I. Visser, C. van Schie, P. van Zuijlen, T. Haanstra, C. A. Lansdorp

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Background:
The use of patient-reported outcomes to improve burn care increases. Little is known on burn patients’ views on what outcomes are most important, and about preferences regarding online Patient Reported Outcome Measures (PROMs). Therefore, this study assessed what outcomes matter most to patients, and gained insights into patient preferences towards the use of online PROMs.

Methods:
Adult patients (≥18 years old), 3–36 months after injury completed a survey measuring importance of outcomes, separately for three time periods: during admission, short-term (<6 months) and long-term (6–24 months) after burn injury. Both open and closed-ended questions were used. Furthermore, preferences regarding the use of patient-reported outcome measures in burn care were queried.

Results:
A total of 140 patients were included (response rate: 27%). ‘Not having pain’ and ‘good wound healing’ were identified as very important outcomes. Also, ‘physical functioning at pre-injury level’, ‘being independent’ and ‘taking care of yourself’ were considered very important outcomes. The top-ten of most important outcomes largely overlapped in all three time periods. Most patients (84%) had no problems with online questionnaires, and many (67%) indicated that it should take up to 15 minutes. Patients’ opinions differed widely on the preferred frequency of follow-up.

Conclusions:
Not having pain and good wound healing were considered very important during the whole recovery of burns; in addition, physical functioning at pre-injury level, being independent, and taking care of yourself were deemed very important in the short and long-term. These outcomes are recommended to be used in burn care and research, although careful selection of outcomes remains crucial as patients prefer online questionnaires up to 15 minutes.

Original languageEnglish
Pages (from-to)31-40
Number of pages10
JournalBurns
Volume50
Issue number1
Early online date10 Nov 2023
DOIs
Publication statusPublished - Feb 2024

Bibliographical note

Acknowledgments:
We thank all participants for their collaboration, and we thank Eshuis J, Meijer J, Van Gemert R, for their cooperation, data collection and support. We thank ZonMw for funding this research, and the Dutch Burns Foundation Beverwijk, Red Cross Hospital Beverwijk, Martini Hospital Groningen, and Maasstad Hospital Rotterdam for their support. Members of the Dutch Burn Care, Education & Research group include: de Vries A, Scholten-Jaegers SMHJ, Bosma E, Middelkoop E, van der Vlies C, Versluis G, Wanders H, Fokke-Akkerman M, Heijblom-van Dinteren MC, Hiddingh J, Bijker G, Stoop M, Boekelaar A.

Publisher Copyright:
© 2023 The Authors

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