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.
DOCUMENT
The Editors thank the investigators for displaying tenacity, evidenced by the significant revisions that were necessary to complete this project [...].
DOCUMENT
An important aspect of the rehabilitation of burn patients is social participation, including daily activities and work. Detailed information on long-term activity impairment and employment is scarce. Therefore, we investigated activity impairment, work status, and work productivity loss in adults 5-7 years following burn injuries, and investigated associations with burn-specific health-related quality of life (HRQL) domains. Adult participants completed the Work Productivity and Activity Impairment General Health questionnaire and the Burn Specific Health Scale-brief (BSHS-B) 5-7 years post-burn. Outcomes were compared between participants with mild/intermediate and severe burns (>20% total body surface area burned). Seventy-six (36%) of the 213 participants experienced some degree of activity impairment due to burn-related problems 5-7 years post-burn. Seventy percent of the population was employed; 12% of them experienced work productivity loss due to burn-related problems. Nineteen percent reported changes in their work situation (partly) because of the burn injury. A higher proportion of participants with severe burns had activity impairments (56% vs 29%; P = .001) and work productivity loss (26% vs 8%; P < .001) compared to participants with mild/intermediate burns. Activity impairment and work productivity loss were both associated with burn-related work problems and lower mood, measured with the BSHS-B. In conclusion, a substantial part of the study population experienced activity impairment and work productivity loss, was unemployed, and/or reported changes in their work situation due to their injury. Particularly patients with severe burns reported productivity loss and had lower employment rates. This subscribes the importance of addressing work-related functioning in the rehabilitation of burn patients.
DOCUMENT
