Original articleHealth-related quality of life in children and youth with acquired brain injury: Two years after injury
Introduction
Acquired brain injury (ABI) refers to any post-neonatal damage to the brain, due to an external cause (traumatic brain injury, TBI) or an internal cause (non-traumatic brain injury, NTBI) such as a brain tumour, stroke or infections such as meningitis or encephalitis.1 In the Netherlands, the estimated yearly incidence rates in children and youth are 585/100.000 and 190/100.000, respectively for TBI and NTBI, with about 15% of ABI classified as moderate or severe.2, 3 The consequences of NTBI are often similar to those of TBI.4
In children and youth, ABI may have a considerable impact on their functioning5, 6, 7 and health-related quality of life (HRQoL).8, 9, 10, 11 However, results may vary between different samples and follow-up periods after injury. Studies including mild brain injuries and early assessment time points have found good HRQoL.12 On the long-term, Anderson et al. (2010) suggested good HRQoL in adult survivors of mild and moderate TBI, and reduced HRQoL for survivors of severe TBI.13
In children and youth with ABI, several sociodemographic, physical and psychological factors have been identified as potentially affecting HRQoL, including: greater severity of ABI,12, 13, 14, 15, 16 younger age at onset,13 lower level of education,13, 16 lower socioeconomic status (SES) of the parents,14, 17 family situation (single parent family)17 and psychosocial problems.13 In addition, pre-injury functioning of the child,14 like poorer behavioural or academic functioning14 or pre-existing psychosocial problems14, 17 are assumed to be important for the perceived HRQoL after brain injury.
Long-term consequences of childhood ABI (≥1 year post-injury), particularly for children with mild injury, have received limited attention and remain poorly understood.5, 8 Clinical perceptions of long-term outcome may be negatively skewed, with only those children with severe and persisting problems presenting for healthcare services on the long term. Thus, there is little evidence to confirm whether long-term consequences reflect permanent deficits, or whether survivors have had the opportunity to ‘catch up’ with their peers. Parents and professionals working with children with ABI face the problem of adequately predicting outcome, and setting appropriate priorities for intervention and follow-up.16, 18 Data on the long-term outcome of ABI regarding perceived HRQoL, using child-reported and parent-reported measures, may add to their knowledge.
Therefore, we performed a long-term follow-up study, two years after brain injury, in a heterogeneous sample of children and youth with ABI, taking into consideration age (6–22 years), type and severity of brain injury (mild, moderate and severe ABI).
The aim of the present study was to 1) investigate their HRQoL as compared with age-appropriate reference values of the Dutch population, and 2) determine associations between HRQoL and sociodemographic, injury-related and family-related characteristics, levels of physical functioning, and cognitive, behavioural or socioemotional problems.
Based on the literature and from clinical experience, we expected a poorer HRQoL for children with a more severe ABI, more severe neurologic impairments, younger age at onset, pre-injury or post-injury cognitive, behavioural or socioemotional problems, and for children from families with a lower SES.
Section snippets
Design and setting
This study was part of a larger cross-sectional two-year follow-up study on outcome of ABI in children and youth aged 6–22 years living in the south-western part of the Netherlands.2, 3 A stratified sample was drawn from a multi-centre incidence cohort of 1892 patients with a diagnosis of ABI, year of onset 2008 or 2009, from large tertiary care hospitals in Rotterdam (Erasmus University Medical Centre, including Sophia Children's Hospital) and The Hague (Haga Hospital, including the Juliana
Sample
Table 1 presents the characteristics of the 70 children participating in this part of the study: their mean age was 12.7 ± 5.2 (range 6–22) years; 55% (n = 38) were boys. The type of injury was TBI in 79% (n = 55) of the cases. Severity of ABI was mild in 87% (n = 61), moderate in 3% (n = 2) and severe in 10% (n = 7). For these characteristics we observed no significant drop-out bias compared with the two-year follow-up sample (n = 147) except for a low percentage of intellectual disability.
Discussion
Two years post-injury, children and youth (aged 6–22 years) with mild to severe ABI perceived their HRQoL to be good, as measured with the PedsQL Generic Core Scales. Overall, their HRQoL was similar to a Dutch reference population of the same age. While interpreting these results, we have to bear in mind that this was a sample of children and youth with predominantly mild ABI; only a few patients were actually being treated for the consequences of ABI.
These findings are consistent with
Conclusions
In conclusion, two years after mild to severe ABI, children and youth with predominantly mild injury experience similar HRQoL compared with the general population. According to their parents, children aged younger than 8 years seemed to be at greater risk for a poorer HRQoL. Post-injury cognitive, behavioural and social problems should receive specific attention during long-term follow-up.
Conflict of interest
This study was financially supported by the Revalidatiefonds (Grant 2010/0029), Johanna Kinder Fonds (Grant 2010/029) and Kinderrevalidatie Fonds Adriaan (Grant 2009/0075-1403). The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
Acknowledgements
We are indebted to C. Catsman-Berrevoets of Department of Paediatric Neurology, Sophia Children's Hospital, Erasmus University Medical Center, Rotterdam, E. Peeters, Department of Paediatric Neurology, Haga Hospital and Medical Center Haaglanden, The Hague and F. van Markus-Doornbosch, Rehabilitation Medical Specialist, Sophia Rehabilitation Center, The Hague for their contribution to the study. We are also indebted to medical students/research assistants D. van Pelt, M. Kingma, I. Verhoeven,
References (39)
- et al.
Congenital and acquired brain injury. Brain injury: epidemiology and pathophysiology
Arch Phys Med Rehabil
(2003) - et al.
10 years outcome from childhood traumatic brain injury
Int J Dev Neurosci
(2012) - et al.
The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity
Ambul Pediatr
(2003) - et al.
The pediatric quality of life inventory: an evaluation of its reliability and validity for children with traumatic brain injury
Arch Phys Med Rehabil
(2005) - et al.
Systematic review of the clinical course, natural history, and prognosis for pediatric mild traumatic brain injury: results of the international collaboration on mild traumatic brain injury prognosis
Arch Phys Med Rehabil
(2014) - et al.
Psychosocial consequences of mild traumatic brain injury in children: results of a systematic review by the international collaboration on mild traumatic brain injury prognosis
Arch Phys Med Rehabil
(2014) - et al.
Youth with acquired brain injury in the Netherlands: a multicentre study
Brain Inj
(2013) - et al.
Psychometric evaluation of the Dutch language version of the child and family follow-up Survey
Dev Neurorehabil
(2015 Aug 24) Functional outcomes of school-age children with acquired brain injuries at discharge from inpatient rehabilitation
Brain Inj
(2008)- et al.
Outcomes following childhood head injury: a population study
J Neurol Neurosurg Psychiatry
(2004)