A longitudinal follow-up study of parent-reported family impact and quality of life in young patients with traumatic and non-traumatic brain injury

Abstract

Purpose Brain injuries (traumatic-/nontraumatic, TBI/nTBI) in young patients may lead to problems e.g., decreased health-related quality of life (HRQoL), and causes family impact. Knowledge regarding the family impact and the relationship with patients’ HRQoL over time is scarce. This follow-up study describes family impact/HRQoL and their mutual relationship in young patients (5–24 years) after TBI/nTBI. Materials and methods Parents of patients that were referred to outpatient rehabilitation completed the PedsQL™Family-Impact-Module questionnaire to assess the family impact and the parent-reported PedsQL™Generic-core-set-4.0 to assess patients’ HRQoL (lower scores: more family impact/worse HRQoL). Questionnaires were completed at the time of referral to rehabilitation (baseline) and one/two years later (T1/T2). Linear-mixed models were used to examine family impact/HRQoL change scores, and repeated-measure correlations (r) to determine longitudinal relationships. Results Two-hundred-forty-six parents participated at baseline, 72 (at T2), median patient’s age at baseline was 14 years (IQR:11–16), and 181 (74%) had TBI. Mean (SD) PedsQL™Family-Impact-Module score at baseline was 71.7 (SD:16.4) and PedsQL™Generic-core-set-4.0: 61.4 (SD:17.0). Over time, PedsQL™Family-Impact-Module scores remained stable, while PedsQL™Generic-core-set-4.0 scores improved significantly(p < 0.05). A moderately strong longitudinal correlation was found between family impact&HRQoL (r = 0.51). Conclusions Family impact does not tend to decrease over time but remained a considerable problem, although patients’ HRQoL improved. Next to focusing on patients’ HRQoL, it remains important to consider family impact and offer family support throughout rehabilitation. IMPLICATIONS FOR REHABILITATION This longitudinal study found that in young patients with traumatic brain injury (TBI) or non-traumatic brain injury (nTBI) referred for rehabilitation there is a considerable impact on the family until two years after referral, whereas the patients’ health-related quality of life (HRQoL) improved significantly. Improvements in patients’ quality of life status may not automatically lead to a decrease of family impact. Rehabilitation clinicians should monitor the impact on the family over time and provide long-term family support with special attention to parental worrying when needed. Clinicians should be aware that, despite significant differences between the clinical characteristics of patients with TBI and nTBI, the courses of family impact are very similar.