Incorporating the patient’s voice in burn care: development and usability study of an online decision aid for dermal substitute application in full-thickness burns

Despite the potential of dermal substitutes to improve scar quality by enhancing dermal regeneration and wound healing, their use remains limited. Barriers such as perceived high costs, concerns about risks, and a lack of clear indications and guidelines contribute to variability in clinical practice. Involving patients in decision-making may help align treatment choices with patient values. This study aimed to explore the needs and preferences of patients and healthcare professionals (HCPs) regarding a decision aid (DA) for off-the-shelf dermal substitute treatment of full-thickness burns, and to develop an online deliberation tool to support shared decision-making (SDM). A multidisciplinary working group, including burn care professionals, patient representatives, and a decision aid expert, guided the development process. Patients’ needs and preferences were assessed by in-depth interviews with six patients who had received a dermal substitute for their burns in one of the three Dutch burn centres. HCPs’ needs and preferences were determined through an online survey. The content and design of the decision aid were developed in five co-design sessions among patients, HCPs, and researchers. Its acceptability and usability were evaluated through think-aloud interviews with both patients and HCPs. The patients’ assessment showed two themes: (1) the importance of providing accessible, adaptable, and patient tailored information, and (2) the influence of the patient’s mental state on their ability to engage in SDM. Patients indicated that a DA could benefit themselves and their relatives. Most HCPs (57.9%) reported dissatisfaction with current information on dermal substitutes and therefore considered a DA desirable. The developed DA comprises three parts: (1) a paper hand-out sheet to explain treatment options (2) an online deliberation sheet providing burn-related information, and advantages and disadvantages of treatment with and without dermal substitutes (3) a personal summary sheet capturing the patient’s preferences to facilitate SDM. Acceptability and usability testing showed that both patients and HCPs found the DA user-friendly and informative. The thoroughly co-designed DA has the potential to support SDM for off-the-shelf dermal substitute treatment by providing patients and HCPs tailored information to support treatment choices.