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

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 REHABILITATIONThis 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.

Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice.

PURPOSE: Evidence for the importance of focusing on participation to promote health and wellbeing in childhood-onset disability exists, but practice is slow to change. This paper provides a knowledge translation roadmap to accelerate uptake of participation evidence into day-to-day practice. MATERIALS AND METHODS: A structured roadmap to guide knowledge translation initiatives for implementing participation-based practices in co-creation with service users was developed based on elements from: the Five-factorframework for predicting implementation outcomes, the Cultural Cone framework, and the Knowledge-to-Action model. RESULTS: Guiding principles paired with examples of multi-component knowledge implementation strategies to facilitate readiness for change by stakeholders at the micro (e.g., client/family, service providers), meso (e.g., administrators within organisations such as rehabilitation centres, hospitals, schools) and macro (e.g., local and governmental policy, regulatory bodies) levels are introduced. Solution-based strategies are provided to facilitate "readiness to change" for each stakeholder group. The strategies are examples for successful implementation of evidence-based interventions/approaches that can be contextualized across settings. CONCLUSIONS: The knowledge translation roadmap can assist children and families, service providers, administrators, and policymakers to bridge existing knowledge-to-practice gaps surrounding participation. Partnering and collaborating through a "family-clinician-manager-community leader-policymaker" synergy is key for achieving strategic practice change focussed on participation.Implications for RehabilitationSound evidence surrounding the topic of participation, including effective assessments and interventions, is available and ready for use.Shifting towards participation-focused practices for children and youth with disabilities requires a systemic multi-level KT approach.Our Participation-KT roadmap, comprised of a framework and a list of principles and strategies for implementation, can be used to guide all stakeholders to foster a shift in practice.Forming partnerships and working collaboratively with all stakeholders is key for successful implementation.

Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting.

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-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 5-24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL™Family-Impact-Module and PedsQL™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 11-16), 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.

Respiratory and upper limb function as outcome measures in ambulant and non-ambulant subjects with Duchenne muscular dystrophy: A prospective multicentre study.

The field of translational research in Duchenne muscular dystrophy (DMD) has been transformed in the last decade by a number of therapeutic targets, mostly studied in ambulant patients. A paucity of studies focus on measures that capture the non-ambulant stage of the disease, and the transition between the ambulant and non-ambulant phase. In this prospective natural history study, we report the results of a comprehensive assessment of respiratory, upper limb function and upper limb muscle strength in a group of 89 DMD boys followed in 3 European countries, 81 receiving corticosteroids, spanning a wide age range (5-18 years) and functional abilities, from ambulant (n = 60) to non-ambulant (n = 29). Respiratory decline could be detected in the early ambulatory phase using Peak Expiratory Flow percentage predicted (PEF%), despite glucocorticoid use (mean annual decline: 4.08, 95% CI [-7.44,-0.72], p = 0.02 in ambulant; 4.81, 95% CI [-6.79,-2.82], p < 0.001 in non-ambulant). FVC% captured disease progression in non-ambulant DMD subjects, with an annual loss of 5.47% (95% CI [-6.48,-4.45], p < 0.001). Upper limb function measured with the Performance of Upper Limb (PUL 1.2) showed an annual loss of 4.13 points (95% CI [-4.79,3.47], p < 0.001) in the non-ambulant cohort. Measures of upper limb strength (MyoGrip and MyoPinch) showed a continuous decline independent of the ambulatory status, when reported as percentage predicted (grip force -5.51%, 95% CI [-6.54,-4.48], p < 0.001 in ambulant and a slower decline -2.86%; 95% CI -3.29,-2.43, p < 0.001, in non-ambulant; pinch force: -2.66%, 95% CI [-3.82,-1.51], p < 0.001 in ambulant and -2.23%, 95% CI [-2.92,-1.53], p < 0.001 in non-ambulant). Furthermore, we also explored the novel concept of a composite endpoint by combining respiratory, upper limb function and force domains: we were able to identify clear clinical progression in patients in whom an isolated measurement of only one of these domains failed to appreciate the yearly change. Our study contributes to the field of natural history of DMD, linking the ambulant and non-ambulant phases of the disease, and suggests that composite scores should be explored further.

Zeta waves: a special type of slow delta waves.

A special type of delta waves with a duration of 1-3 sec which, because of their saw-tooth or zed shape in the EEG, we have named 'zeta waves' has been described. They occur particularly in cases with rather severe brain lesions, usually with an acute or subacute onset and a space occupying character. In a period of 2 years during which 2500 EEGs have been reported we have seen zeta waves in 20 patients in whom 76 EEGs have been recorded. The characteristics of these waves and the types of lesions with which they occurred are described. The importance of an adequate recording technique for proper presentation of this EEG pattern is emphasized.