Kara McMullen

Symptom burden in persons with myotonic and facioscapulohumeral muscular dystrophy

ObjectiveThis study examines the prevalence of pain, fatigue, imbalance, memory impairment, and vision loss in persons with myotonic and facioscapulohumeral dystrophy and their association with functioning. DesignA survey (N = 170) included measures of severity (0–10 scales) and course of these symptoms as well as measures of social integration, home competency, mental health, and productive activity. Descriptive and regression analyses examined the associations between symptoms and functioning. ResultsFatigue (91%), imbalance (82%), and pain (77%) were the most commonly reported. The most severe symptom was fatigue (mean ± SD severity, 5.14 ± 2.81), followed by imbalance (4.95 ± 3.25). Symptoms were most likely to stay the same or worsen since onset. Controlling for potential medical and demographic confounds, symptoms were associated with 17% of the mental health variance, 10% of home competency, 10% of social integration, 16% of productive activity for myotonic dystrophy type 1, and 12% of productive activity for facioscapulohumeral muscular dystrophy. ConclusionsPain, fatigue, and imbalance are common in persons with muscular dystrophy. Interventions may be useful to mitigate their impact on functioning. Further research should examine these relationships to guide clinical practices.

Satisfaction with life after burn: A Burn Model System National Database Study

OBJECTIVES While mortality rates after burn are low, physical and psychosocial impairments are common. Clinical research is focusing on reducing morbidity and optimizing quality of life. This study examines self-reported Satisfaction With Life Scale scores in a longitudinal, multicenter cohort of survivors of major burns. Risk factors associated with Satisfaction With Life Scale scores are identified. METHODS Data from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Model System (BMS) database for burn survivors greater than 9 years of age, from 1994 to 2014, were analyzed. Demographic and medical data were collected on each subject. The primary outcome measures were the individual items and total Satisfaction With Life Scale (SWLS) scores at time of hospital discharge (pre-burn recall period) and 6, 12, and 24 months after burn. The SWLS is a validated 5-item instrument with items rated on a 1-7 Likert scale. The differences in scores over time were determined and scores for burn survivors were also compared to a non-burn, healthy population. Step-wise regression analysis was performed to determine predictors of SWLS scores at different time intervals. RESULTS The SWLS was completed at time of discharge (1129 patients), 6 months after burn (1231 patients), 12 months after burn (1123 patients), and 24 months after burn (959 patients). There were no statistically significant differences between these groups in terms of medical or injury demographics. The majority of the population was Caucasian (62.9%) and male (72.6%), with a mean TBSA burned of 22.3%. Mean total SWLS scores for burn survivors were unchanged and significantly below that of a non-burn population at all examined time points after burn. Although the mean SWLS score was unchanged over time, a large number of subjects demonstrated improvement or decrement of at least one SWLS category. Gender, TBSA burned, LOS, and school status were associated with SWLS scores at 6 months; scores at 12 months were associated with LOS, school status, and amputation; scores at 24 months were associated with LOS, school status, and drug abuse. CONCLUSIONS In this large, longitudinal, multicenter cohort of burn survivors, satisfaction with life after burn was consistently lower than that of non-burn norms. Furthermore mean SWLS scores did not improve over the two-year follow-up period. This study demonstrates the need for continued efforts to improve patient-centered long term satisfaction with life after burn.

Fatigue Following Burn Injury: A Burn Model System National Database Study.

Fatigue is a commonly reported but not well-documented symptom following burn injury. This studys objective was to determine the frequency and severity of fatigue over time and to identify predictors of fatigue in the adult burn population. Data from the Burn Model System National Database (April 1997 to January 2006) were analyzed. Individuals over 18 years of age who were alive at discharge were included. The vitality subscale of the Short-Form 36 Item Health Survey was examined at preinjury and discharge and at 6, 12, and 24 months postinjury. Mean and number of low vitality scores were calculated at each time interval. Descriptive statistics were generated for demographic and medical data. Cross-sectional regression models analyzed predictors of vitality at 6, 12, and 24 months postinjury. The study included 945 subjects. The population was 72.5% male and had a mean age of 40.6 years and mean burn size of 17.4%. Fatigue symptoms were present in a majority of the population (74.6%) and were most commonly reported at discharge. Although fewer burn survivors reported fatigue symptoms at each subsequent follow-up (P < .001), approximately one-half (49%) of the population continued to report fatigue symptoms at 24 months postinjury. Larger burn size was the only variable that was significant or approaching significance at all follow-up time points (P < .0167). Fatigue symptoms are common after burns and many burn survivors continue to report symptoms at 2 years postinjury. Burn survivors did not return to preinjury fatigue levels, highlighting the importance of understanding and monitoring fatigue.

Psychometric Properties of the Satisfaction With Life Scale in People With Traumatic Brain, Spinal Cord, or Burn Injury: A National Institute on Disability, Independent Living, and Rehabilitation Research Model System Study

This study evaluated the measurement properties of the Satisfaction With Life Scale (SWLS) in a sample of 17,897 people with spinal cord injury (48%, n = 8,566), traumatic brain injury (44%, n = 7,941), and burn injury (8%, n = 1,390), 1 year following injury. We examined measurement invariance across the groups, unidimensionality, local independence, reliability from a classical test and item response theory (IRT) framework, and fit to a unidimensional IRT model. The results support unidimensionality and local independence of the SWLS. Reliability was adequate from a classical test and IRT perspective. IRT analysis found that the SWLS could be improved by using only five response categories rather than seven and by removing the fifth item, “If I could live my life over, I would change almost nothing.” This item functions poorly and reduces instrument reliability. With these revisions, the SWLS is a useful instrument to monitor an important outcome of trauma rehabilitation.

National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System: Review of Program and Database

The Burn Model System (BMS) centers program was created in 1994 to evaluate the long-term outcomes of burn injuries. As part of this multicenter program, a comprehensive longitudinal database was developed to facilitate the study of a number of functional and psychosocial outcomes after burn injury. In this article, we provide an overview of the data collection procedures, measures selection process, and an overview of the participant data collected between 1994 and 2016. Surveys were administered during hospitalization and at 6, 12, and 24 months after discharge, and in the most recent funding cycle, data collection at every 5 years postinjury was added. More than 7200 people with burn injury were eligible to participate in the BMS National Longitudinal Database. Of these, >5900 (82%) were alive at discharge and consented to follow-up data collection. The BMS National Longitudinal Database represents a large sample of people with burn injury, including information on demographic characteristics, injury characteristics, and health outcomes. The database is publicly available and can be used to examine the effect of burn injury on long-term outcomes.

Reasons for Distress Among Burn Survivors at 6, 12, and 24 Months Postdischarge: A Burn Injury Model System Investigation

OBJECTIVE To identify important sources of distress among burn survivors at discharge and 6, 12, and 24 months postinjury, and to examine if the distress related to these sources changed over time. DESIGN Exploratory. SETTING Outpatient burn clinics in 4 sites across the country. PARTICIPANTS Participants who met preestablished criteria for having a major burn injury (N=1009) were enrolled in this multisite study. INTERVENTIONS Participants were given a previously developed list of 12 sources of distress among burn survivors and asked to rate on a 10-point Likert-type scale (0=no distress to 10=high distress) how much distress each of the 12 issues was causing them at the time of each follow-up. MAIN OUTCOMES MEASURES The Medical Outcomes Study 12-Item Short-Form Health Survey was administered at each time point as a measure of health-related quality of life. The Satisfaction With Appearance Scale was used to understand the relation between sources of distress and body image. Finally, whether a person returned to work was used to determine the effect of sources of distress on returning to employment. RESULTS It was encouraging that no symptoms were worsening at 2 years. However, financial concerns and long recovery time are 2 of the highest means at all time points. Pain and sleep disturbance had the biggest effect on ability to return to work. CONCLUSIONS These findings can be used to inform burn-specific interventions and to give survivors an understanding of the temporal trajectory for various causes of distress. In particular, it appears that interventions targeted at sleep disturbance and high pain levels can potentially effect distress over financial concerns by allowing a person to return to work more quickly.

Satisfaction With Life Over Time in People With Burn Injury: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study

OBJECTIVE To examine trajectories of satisfaction with life (SWL) of burn survivors over time and their clinical, demographic, and other predictors. DESIGN Longitudinal survey. SETTING Not applicable. PARTICIPANTS Individuals ≥18 years of age who underwent burn-related surgery and met one of the following criteria: (1) >10% total body surface area (TBSA) burn and ≥65 years of age; (2) >20% TBSA burn and 18 to 64 years of age; (3) electrical high voltage/lightning injury; or (4) burn injury to the hands, face, or feet. The participants (N=378) had data on all variables of interest and were included in the analyses. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURE Satisfaction With Life Scale. RESULTS Growth mixture modeling identified 2 classes with different trajectories of SWL. The mean SWL of the unchanged class (n=224, 60%) was flat over 2 years with high initial SWL scores. The SWL of the dissatisfied class (n=154, 40%) was at the low end of average and got progressively worse over time. CONCLUSIONS SWL after burn injury can be described by 2 different trajectories with substantially different outcomes. Older age, worse mental health, and unemployment prior to injury predicted membership in the dissatisfied class. Additional services could be provided to those at high risk for low SWL to achieve better outcomes.