Identifying, targeting, and evaluating the consequences of Acquired Brain Injury (ABI) in young individuals (4-25 years old) are essential elements of medical specialist rehabilitation care for... Show moreIdentifying, targeting, and evaluating the consequences of Acquired Brain Injury (ABI) in young individuals (4-25 years old) are essential elements of medical specialist rehabilitation care for this group. Several knowledge gaps regarding the occurrence and severity of consequences and the delivery of rehabilitation existed.This thesis enhanced the understanding of ABI-related consequences and aimed to optimize rehabilitation care provided to young Dutch individuals with ABI.Section 1 of this thesis investigated the severity and course over 2 years of persisting ABI-related problems in young people with ABI and their families. In this cohort, many problems were found in the domains of Health-related Quality of Life (HRQoL), fatigue, participation, and family impact at time of referral to rehabilitation and these problems tended to persist over time.In section 2, the structure and process of rehabilitation for young patients with ABI across Dutch rehabilitation centers and the development of a national consensus-based framework for clinical practice, including preferred assessments, interventions, and psychoeducation, for young people with ABI was described.This thesis emphasizes the importance of a holistic approach to rehabilitation and lays the foundation for future initiatives aiming to further optimize rehabilitation treatment for young individuals with ABI and their families. Show less
Allonsius, F.; Kloet, A.J. de; Markus-Doornbosch, F. van; Meesters, J.J.L.; Kromme, C.H.; Vlieland, T.P.M.V.; Holst, M. van der 2021
Purpose: To increase knowledge/awareness on family impact (FI) after acquired brain injury (ABI) in rehabilitation settings, it is essential to investigate the associations between patient... Show morePurpose: To increase knowledge/awareness on family impact (FI) after acquired brain injury (ABI) in rehabilitation settings, it is essential to investigate the associations between patient-functioning and impact on families. This has been explored in hospital-based cohorts, but not in rehabilitation settings.Methods: A cross-sectional, multi-center study among parents of children/young adults (aged 57-<24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL (TM) Family-Impact-Module and PedsQL (TM) generic-core-4.0 to assess FI and health-related quality of life (HRQoL). Univariate- and multivariable-regression analyses were performed to investigate associations between HRQoL/patient/injury/family-related factors and FI.Results: 246 families participated; patients' median age was 14 year (IQR 117-<16), 65 had non-traumatic-brain-injury (nTBI) (26%), 127 were female. FI was found to be considerable (median FIM-score 71.9, IQR:60-85). Especially referral to rehabilitation >6 months after onset, diminished patients' mental/emotional health and HRQoL (child/family factors), and premorbid problems were associated with higher FI.Conclusions: In this rehabilitation cohort, pediatric ABI caused considerably higher FI than in hospital-based studies with referral to rehabilitation >6 months, diminished child/family factors and presence of premorbid problems increasing FI. Assessing and monitoring FI and its associated factors enables professionals to individualize treatment, psychoeducation, support and follow-up. Show less
