Family Burden After Traumatic Brain Injury in Children
ABSTRACT Traumatic brain injury has a substantial impact on caregivers. This study describes the burden experienced by caregivers of children with traumatic brain injury and examines the relationship between child functioning and family burden during the first year after injury.
Children aged 5 to 15 years hospitalized for traumatic brain injury at 4 participating trauma centers were eligible. Caregivers completed baseline and 3- and 12-month telephone interviews measuring the child's health-related quality of life using the Pediatric Quality of Life Inventory. The emotional impact scale of the Child Health Questionnaire was used to identify caregivers with substantial distress, including general worry or interference with family routine. Caregiver perceptions of whether health care needs were met or unmet and days missed from work were also measured.
A total of 330 subjects enrolled; follow-up was conducted with 312 at 3 months and 288 at 12 months. Most subjects were white (68%) and male (69%). Abnormal Pediatric Quality of Life Inventory subscores were related to substantial caregiver burden (either general worry or interference in routine). These abnormalities were reported by >75% of patients at 3 months and persisted to 1 year in some patients. Parental perception of unmet health care needs was strongly related to family burden outcomes, with up to 69% of this subset of parents reporting substantial worry, and nearly one quarter reporting interference with daily routine/concentration 1 year after injury. Child dysfunction predicted parental burden at 3 and 12 months. Burden was greater when health care need was unmet. Abnormalities on the Pediatric Quality of Life Inventory predicted the amount of work missed by parents, especially in the presence of unmet needs.
Caregivers are more likely to report family burden problems when child functioning is poorer and health care needs are unmet. Improved identification and provision of services is a potentially modifiable factor that may decrease family burden after pediatric traumatic brain injury.
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ABSTRACT: Objective: We aimed to estimate from a societal perspective the 1-year and lifetime direct and indirect costs of traumatic brain injury (TBI) for New Zealand (NZ) in 2010 projected to 2020. Methods: An incidence-based cost of illness model was developed using data from the Brain Injury Outcomes New Zealand in the Community Study. Details of TBI-related resource use during the first 12 months after injury were obtained for 725 cases using resource utilization information from participant surveys and medical records. Total costs are presented in US dollars year 2010 value. Results: In 2010, 11,301 first-ever TBI cases were estimated to have occurred in NZ; total first-year cost of all new TBI cases was estimated to be US $47.9 million with total prevalence costs of US $101.4 million. The average cost per new TBI case during the first 12 months and over a lifetime was US $5,922 (95% confidence interval [CI] $4,777–$7,858), varying from US $4,636 (95% CI $3,756–$5,561) for mild cases to US $36,648 (95% CI $16,348–$65,350) for moderate/severe cases. Because of the unexpectedly large number of mild TBI cases (95% of all TBI cases), the total cost of treating these cases is nearly 3 times that of moderate/severe. The total lifetime cost of all TBI survivors in 2010 was US $146.5 million and is expected to increase to US $177.1 million in 2020. Conclusion: The results suggest that there is an urgent need to develop effective interventions to prevent both mild and moderate/severe TBI.Neurology 10/2014; 83(18):1645-1652. DOI:10.1212/WNL.0000000000000933 · 8.30 Impact Factor
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ABSTRACT: To systematically review existing empirical evidence concerning neuropsychological, psychosocial and academic outcomes following mild and moderate TBI during childhood and adolescence. The studies reviewed include data on 8553 children and adolescents from ages 0-18 that experienced mild and moderate TBIs. A literature search using MeSH terms for 'children' cross-referenced with terms associated with 'head injuries' and 'cognition' was conducted using Pubmed, CINAHL Plus and Scopus databases as well as other data sources to retrieve grey literature results. Articles published between 1 January 2008 and 22 April 2013 were included. Fifty-five studies were included in the review, with multiple studies including information on both mild and moderate TBI; 46 studies focused on mild TBI outcomes and 22 studies focused on moderate TBI outcomes. The majority of outcomes were described as psychosocial (50%) or neuropsychological (40%); 51% of studies presented adverse outcomes. The results suggest that not all children with mild or moderate TBI recover without long-term problems. Few studies followed children and adolescents with mild TBIs for extended periods of time, although it is clinically important to monitor patients over time.Brain Injury 03/2015; DOI:10.3109/02699052.2014.1002003 · 1.86 Impact Factor
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ABSTRACT: Measurement of health-related quality of life (HRQL) is essential to quantify the subjective burden of traumatic brain injury (TBI) in survivors. We performed a systematic review of HRQL studies in TBI to evaluate study design, instruments used, methodological quality, and outcome. Fifty-eight studies were included, showing large variation in HRQL instruments and assessment time points used. The Short Form-36 (SF-36) was most frequently used. A high prevalence of health problems during and after the first year of TBI was a common finding of the studies included. In the long term, patients with a TBI still showed large deficits from full recovery compared to population norms. Positive results for internal consistency and interpretability of the SF-36 were reported in validity studies. The Quality of Life after Brain Injury instrument (QOLIBRI), European Brain Injury Questionnaire (EBIQ), Child Health Questionnaire (CHQ), and the World Health Organization Quality of Life short version (WHOQOL-BREF) showed positive results, but evidence was limited. Meta-analysis of SF-36 showed that TBI outcome is heterogeneous, encompassing a broad spectrum of HRQL, with most problems reported in the physical, emotional, and social functioning domain. The use of SF-36 in combination with a TBI-specific instrument, i.e., QOLIBRI, seems promising. Consensus on preferred methodologies of HRQL measurement in TBI would facilitate comparability across studies, resulting in improved insights in recovery patterns and better estimates of the burden of TBI. Electronic supplementary material The online version of this article (doi:10.1186/s12963-015-0037-1) contains supplementary material, which is available to authorized users.Population Health Metrics 12/2015; 13(1):4. DOI:10.1186/s12963-015-0037-1 · 2.11 Impact Factor