Het brandwondenportaal is een e-Health applicatie voor patiënten met brandwonden. Patiënten vinden het brandwondenportaal waardevol, met name omdat duidelijke en betrouwbare informatie op elk moment beschikbaar is. De littekenkeuzehulp helpt hen en de zorgverleners in het samen maken van een behandelkeuze. De mate van samen beslissen is na de introductie van het portaal gestegen. Met name bespreking van de manier waarop en in welke mate een patiënt betrokken wil worden bij het maken van een beslissing is verbeterd. Net als het samen bespreken van de voor- en nadelen en het samen afwegen van verschillende behandelingsmogelijkheden. Wensen voor doorontwikkeling van het portaal zijn onder andere informatie speciaal voor kinderen en hun ouders en ervaringsverhalen.
DOCUMENT
BACKGROUND: Physical activity is essential in burn care to counteract the effects of severe burns and inactivity during hospitalization. However, detailed knowledge of performed physical activities is lacking. This study evaluated the feasibility of a dual accelerometer-based method to assess type, frequency, and duration of physical activity in critically ill burn patients during hospitalization.METHODS: A prospective observational study was conducted at the burn center of the Martini Hospital, Groningen, The Netherlands. Eligible were patients with a total body surface area (TBSA) burned of ≥ 15 % or an indication for intensive care. Patients wore two accelerometers, one on the chest and one on the diagonally opposite thigh. An algorithm converted accelerometer data into type, frequency, and duration of activities common for intensive care patients. An activity diary was used to assess non-wear time and its content, e.g., surgery.RESULTS: Five patients (20-60 years, 13-31 % TBSA burned, LOS 30-65 days) were included. Per patient, 14-49 days (17,380-61,796 min) could be analyzed of which 7-14 % was non-wear time. During wear time, 86-95 % of activities could be identified and quantified. However, processing the data was labor-intensive.CONCLUSION: The dual accelerometer-based method proved feasible for research purposes. For clinical application, further refinement of data processing is required.
DOCUMENT
PURPOSE: Describe prevalence and severity of fatigue in children and adolescents with burns during six months after hospital discharge, identify potential explanatory variables, and examine the relationship with exercise capacity.MATERIALS AND METHODS: Fatigue was assessed using the Pediatric-Quality-of-Life-Inventory-Multidimensional-Fatigue-Scale (PedsQL-MFS) at discharge, and six weeks, three-, and six months after discharge. PedsQL-MFS scores ≥1 SD below the age-group specific non-burned reference mean were considered to signify fatigue.RESULTS: Twenty-two children and adolescents (13 boys/9 girls, age 6-18 years, with burns covering 2-34% of total body surface area) were included. The prevalence of fatigue decreased from 65% (11/17) at discharge to 28% (5/18) six months after discharge. At group level, fatigue severity decreased over time, reaching healthy reference values from six weeks after discharge and beyond. At individual level, the course of fatigue severity varied widely. Fatigue severity at six months after discharge could not be predicted by age, sex, or burn severity (p = 0.51, p = 0.58, p = 0.95, respectively). The association with exercise capacity was weak (r = 0.062-0.538).CONCLUSIONS: More than a quarter of pediatric burn patients reported fatigue six months after discharge. Further research in larger populations is required, including also the impact of burn-related fatigue on daily functioning and quality of life.Trial registration number: OND1353942Implications for rehabilitationFatigue should be recognized as a potential consequence of (pediatric) burns, even several months post burnFatigue should be assessed regularly after discharge in all children and adolescents with burns, as it seems not possible to predict its severity from age, sex, or burn severity characteristicsThe weak association between exercise capacity and self-reported fatigue suggests that burn-related fatigue is not simply a consequence of a reduced exercise capacity.
DOCUMENT
