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.
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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.
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OBJECTIVE: Perceived fatigue significantly impacts quality of life after burns, yet how often it occurs is unknown. Therefor this study assessed the prevalence of perceived fatigue of burn survivors.METHODS: In February 2023, a systematic literature search was performed in CINAHL, Embase, PsycInfo, PubMed and Web of Science. Studies reporting the prevalence of post-burn perceived fatigue were included.RESULTS: In ten cross-sectional studies of moderate-high quality with measurements between 5.3 days and 42 years post burn, the prevalence of perceived fatigue varied between 5 % and 78 % with no apparent time trends. Broad study populations hindered explaining this varying prevalence by age or %TBSA. In four high-quality longitudinal studies with 3-5 measurements between 1 and 24 months post burn, the prevalence decreased over time, dropping from approximately 70 to 50 % in adults and 65 to 28 % in children. Studies used various measurement instruments and cut-off points for operationalizing perceived fatigue, severely limiting the interpretation and comparison of prevalence rates across studies.CONCLUSIONS: The high prevalence and persistent nature of perceived fatigue among burn survivors emphasize its crucial role in burn rehabilitation. Future studies should prioritize identifying individuals with adverse trajectories of perceived fatigue and unravelling underlying mechanisms to develop effective treatments for reducing post-burn perceived fatigue.
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The Editors thank the investigators for displaying tenacity, evidenced by the significant revisions that were necessary to complete this project [...].
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BACKGROUND: Burn injuries have a major impact on the patient's physical and psychological functioning. The consequences can, especially in pediatric burns, persist long after the injury. A decrease in physical fitness seems logical as people survive burn injuries after an often extensive period of decreased activity and an increased demand of proteins leading to catabolism, especially of muscle mass. However, knowledge on the possibly affected levels of physical fitness in children and adolescents after burn injury is limited and pertains only to children with major burns. The current multidimensional study aims to determine the level of physical fitness, the level of physical activity, health-related quality of life and perceived fatigue in children after a burn injury. Furthermore, interrelations between those levels will be explored, as well as associations with burn characteristics.METHODS/DESIGN: Children and adolescents in the age range of 6 up to and including 18 years are invited to participate in this cross-sectional descriptive study if they have been admitted to one of the three Dutch burn centers between 6 months and 5 years ago with a burn injury involving at least 10% of the total body surface area and/or were hospitalized ≥ 6 weeks. Physical fitness assessments will take place in a mobile exercise lab. Quantitative measures of cardiorespiratory endurance, muscular strength, body composition and flexibility will be obtained. Outcomes will be compared with Dutch reference values. Physical activity, health-related quality of life and fatigue will be assessed using accelerometry and age-specific questionnaires.DISCUSSION: The findings of the current study will contribute to a better understanding of the long-term consequences of burn injury in children and adolescents after burns. The results can guide rehabilitation to facilitate a timely and optimal physical recovery.TRIAL REGISTRATION: The study is registered in the National Academic Research and Collaborations Information System of the Netherlands (OND1348800).
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PURPOSE: To investigate factors that influence participation in and needs for work and other daytime activities among individuals with severe mental illnesses (SMI). METHODS: A latent class analysis using routine outcome monitoring data from 1069 patients was conducted to investigate whether subgroups of individuals with SMI can be distinguished based on participation in work or other daytime activities, needs for care in these areas, and the differences between these subgroups. RESULTS: Four subgroups could be distinguished: (1) an inactive group without daytime activities or paid employment and many needs for care in these areas; (2) a moderately active group with some daytime activities, no paid employment, and few needs for care; (3) an active group with more daytime activities, no paid employment, and mainly met needs for care; and (4) a group engaged in paid employment without needs for care in this area. Groups differed significantly from each other in age, duration in MHC, living situation, educational level, having a life partner or not, needs for care regarding social contacts, quality of life, psychosocial functioning, and psychiatric symptoms. Differences were not found for clinical diagnosis or gender. CONCLUSIONS: Among individuals with SMI, different subgroups can be distinguished based on employment situation, daytime activities, and needs for care in these areas. Subgroups differ from each other on patient characteristics and each subgroup poses specific challenges, underlining the need for tailored rehabilitation interventions. Special attention is needed for individuals who are involuntarily inactive, with severe psychiatric symptoms and problems in psychosocial functioning.
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For deep partial-thickness burns no consensus on the optimal treatment has been reached due to conflicting study outcomes with low quality evidence. Treatment options in high- and middle-income countries include conservative treatment with delayed excision and grafting if needed; and early excision and grafting. The majority of timing of surgery studies focus on survival rather than on quality of life. This study protocol describes a study that aims to compare long-term scar quality, clinical outcomes, and patient-reported outcomes between the treatment options. A multicentre prospective study will be conducted in the three Dutch burn centres (Rotterdam, Beverwijk, and Groningen). All adult patients with acute deep-partial thickness burns, based on healing potential with Laser Doppler Imaging, are eligible for inclusion. During a nine-month baseline period, standard practice will be monitored. This includes conservative treatment with dressings and topical agents, and excision and grafting of residual defects if needed 14–21 days post-burn. The subsequent nine months, early surgery is advocated, involving excision and grafting in the first week to ten days post-burn. The primary outcome compared between the two groups is long-term scar quality assessed by the Patient and Observer Scar Assessment Scale 3.0 twelve months after discharge. Secondary outcomes include clinical outcomes and patient-reported outcomes like quality of life and return to work. The aim of the study is to assess long-term scar quality in deep partial-thickness burns after conservative treatment with delayed excision and grafting if needed, compared to early excision and grafting. Adding to the ongoing debate on the optimal treatment of these burns. The broad range of studied outcomes will be used for the development of a decision aid for deep partial-thickness burns, to fully inform patients at the point of consent to surgery and support optimal person-centred care.
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Background: As the assistive and resistive properties of water can facilitate the performance of exercise, aquatic exercise therapy might be a promising rehabilitation modality for burn patients. This study aimed to investigate the feasibility and acceptability of aquatic exercise therapy in adult burn patients with an indication for supervised exercise therapy. Methods: Eligible for this observational pilot study were all competent adult burn patients with an indication for supervised exercise therapy who had been admitted to the burn centre of the Maasstad Hospital between June 2016 and February 2017. Patients were asked to participate in an in-hospital aquatic exercise therapy program for a minimum of 2 weeks, 2 times per week, or otherwise serve as control by having land-based exercise therapy (regular care). Feasibility of aquatic exercise therapy was assessed by comparing the number of eligible patients to the number of patients that could actually participate, monitoring attendance rates, monitoring complications, and evaluating early experiences. Acceptability was assessed using the Water Exercise Acceptability Questionnaire. Results: Eleven patients were invited and ten of them agreed to participate. All chose aquatic instead of land-based exercise therapy. Participants were aged between 19 and 64 years and their burns affected 18–53% of total body surface area (TBSA). Aquatic exercise therapy appeared feasible in nine of 13 eligible patients (69%). Attendance rates were high (42–100%) and the majority of participants (n = 9) continued with aquatic exercise therapy beyond the initial two weeks. No serious complications (e.g. infections) occurred. Adverse symptoms (wound healing issues) were reported in five participants, but in four of them these were not likely to be due to the aquatic exercise therapy. Enjoyment was high and adherence to the aquatic exercise therapy was further facilitated by support from staff, a sense of achievement, noticeable improvements, personal motivation, and support from other participants. Peer support was reported as a positive side effect. Conclusions: These preliminary results indicate that aquatic exercise therapy is both feasible and acceptable for the majority of adult burn patients with an indication for supervised exercise therapy. No indications were found for an increased risk of infection or other serious complications.
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In recent years video game consoles, such as the Nintendo Wii™ and the Microsoft Kinect™, have been introduced into residential facilities. This paper presents a review of current studies documenting the benefits and detriments the Wii could have on adults aged 60 years and over in residential facilities, concentrating on the common uses of the Wii in care facilities: maintaining physical fitness, promoting mental well-being, encouraging social interaction and both physical and mental rehabilitation. Furthermore, this paper discusses the potential use of the Microsoft Kinect in care for older persons. The Wii can have a positive impact on the physical and mental health of older adults living in care facilities, but additional work should still be conducted, including assessing the use of games outside of Wii Sports and Wii Fit and possible non-gaming application of the Wii in care for older adults. Results for the Wii display potential for use of the Kinect in care facilities but further exploration is required to assess the potential physical impact and interaction viability.
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OBJECTIVES: Amplitude-mode (A-mode) ultrasonography is a promising technique to monitor loss and recovery of skeletal muscle in patients with burns. However, its clinimetric properties are unknown. Therefore, we determined its feasibility, interrater, and intrarater reliability, and clinical utility.METHODS: Skeletal muscle thickness of upper arms and legs was assessed longitudinally in hospitalized adult patients with ≥ 5 % total body surface area (TBSA) burns, by pairs of two out of five raters. Feasibility was evaluated by % successful assessments, reliability by intra-class correlation coefficients (ICCs), and clinical utility by smallest detectable change (SDC).RESULTS: Thirty-four patients participated (77 % male; mean age 48 ± 17 y, median TBSA burned 12 % [IQR 7-19]). Images were acquired on 69 % of planned occasions, and 89 % of images could be analyzed. Overall interrater ICCs were ≥ 0.84 (for pairs: 0.63-0.99) and intrarater ICCs were ≥ 0.95 (for pairs: 0.45-0.99). The overall interrater SDC was ≤ 33 % of the measured mean (for pairs: 3-52 %), while intrarater SDC was ≤ 20 % (for pairs: 3-48 %). All five raters could measure legs with moderate to excellent reliability, whereas for arms some demonstrated poor reliability.CONCLUSION: A-mode ultrasonography assessment of skeletal muscle in patients with burns is feasible. However, reliability and clinical utility are rater-dependent; therefore we recommend assessments by the same rater.
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