Meaningful outcomes for children and their caregivers attending a paediatric brain centre.

Aim: To identify meaningful outcomes of children and their caregivers attending a paediatric brain centre.

Method: We compiled a long list of outcomes of health and functioning of children with brain-related disorders such as cerebral palsy, spina bifida, (genetic) neurodevelopmental disorders, and acquired brain injury. We incorporated three perspectives: patients, health care professionals, and published outcome sets.

Quantification of the development of trunk control in healthy infants using inertial measurement units.

Trunk motor control is essential for the proper functioning of the upper extremities and is an important predictor of gait capacity in children with delayed development. Early diagnosis and intervention could increase the trunk motor capabilities in later life, but current tools used to assess the level of trunk motor control are largely subjective and many lack the sensitivity to accurately monitor development and the effects of therapy. Inertial measurement units could yield an objective quantitative assessment that is inexpensive and easy-to-implement.

Factors for changes in self-care and mobility capabilities in young children with cerebral palsy involved in regular outpatient rehabilitation care.

Background: Assessing prognosis of self-care and mobility capabilities in children with cerebral palsy (CP) is important for goal setting, treatment guidance and meaningful professional-caregiver conversations.

Aims: Identifying factors associated with changes in self-care and mobility capabilities in regular outpatient multidisciplinary paediatric CP rehabilitation care.

Methods And Procedures: Routinely monitored longitudinal data, assessed with the Paediatric Evaluation of Disability Inventory (PEDI-Functional-Skills-Scale, FSS 0-100) was retrospectively analysed.

Longitudinal two years evaluation of neuropsychological outcome in children after out of hospital cardiac arrest.

Aim: To investigate longitudinal functional and neuropsychological outcomes 3-6 and 24 months after paediatric out-of-hospital cardiac arrest (OHCA). Further, to explore the association between paediatric cerebral performance category (PCPC) and intelligence.

Methods: Prospective longitudinal single center study including children (0-17 years) with OHCA, admitted to the PICU of a tertiary care hospital between 2012 and 2017.

Cognitive linguistic Treatment in Landau Kleffner Syndrome: Improvement in Daily Life Communication.

We report a case study of cognitive linguistic treatment in a teenager with chronic severe Landau Kleffner Syndrome. The effect of speech and language therapy in LKS is rarely examined and our case is unique in that we use an effective approach in adult aphasia to treat language deficits in aphasia in LKS. The results show successful acquisition of a considerable amount of new words as well as improved communication in daily life.

The role of botulinum toxin in multimodal treatment of spasticity in ambulatory children with spastic Cerebral Palsy: extensive evaluation of a cost-effectiveness trial.

Background: A cost-effectiveness trial (the Space Bop study) on the added value of botulinum toxin injections (BoNT-A) in the leg muscles, as part of a multimodal intervention for ambulatory children with spastic cerebral palsy in the context of a single distinct cycle of care was performed recently by our group. For a broad set of effect outcomes, we found that BoNT-A had no added value if children received comprehensive rehabilitation. However, this counterintuitive finding was met with scepticism.

Relationship between changes in motor capacity and objectively measured motor performance in ambulatory children with spastic cerebral palsy.

Background: Different interventions are offered to children with cerebral palsy (CP) to improve the activity domain of the international classification of functioning (ICF). In therapy settings, the focus is mostly on motor capacity, but the ultimate goal is to improve motor performance. We therefore examined if changes in motor capacity outcomes are accompanied by changes in objectively measured motor performance after a 3-month intensive treatment period in ambulatory children with CP.

Care for children with severe chronic skin diseases.

In this study, the care for children with a severe chronic skin disease in our national expert center of pediatric dermatology was evaluated. Patients and their parents were questioned by using existing questionnaires: 50 pediatric patients completed the modified "my positive health" questionnaire of Huber and 51 parents completed Pelentsov parental needs scale. Nineteen involved professionals answered a questionnaire with open boxes.

Intramuscular botulinum toxin prior to comprehensive rehabilitation has no added value for improving motor impairments, gait kinematics and goal attainment in walking children with spastic cerebral palsy.

Objective: Botulinum toxin (BoNT-A) is widely used in combined treatment for spastic cerebral palsy, but its added value preceding comprehensive rehabilitation for motor impairments, gait, and goal attainment has not been studied.

Design: A comparative multi-centre trial, in which two groups underwent comprehensive rehabilitation (i.e.

Value of botulinum toxin injections preceding a comprehensive rehabilitation period for children with spastic cerebral palsy: A cost-effectiveness study.

Objective: Despite the widespread use of botulinum toxin in ambulatory children with spastic cerebral palsy, its value prior to intensive physiotherapy with adjunctive casting/orthoses remains unclear.

Design: A pragmatically designed, multi-centre trial, comparing the effectiveness of botulinum toxin + intensive physiotherapy with intensive physiotherapy alone, including economic evaluation.

Subjects/patients: Children with spastic cerebral palsy, age range 4-12 years, cerebral palsy-severity Gross Motor Function Classification System levels I-III, received either botulinum toxin type A + intensive physiotherapy or intensive physiotherapy alone and, if necessary, ankle-foot orthoses and/or casting.

Prevalence of fatigue, pain, and affective disorders in adults with duchenne muscular dystrophy and their associations with quality of life.

Objectives: To assess the prevalence of fatigue, pain, anxiety, and depression in adults with Duchenne muscular dystrophy (DMD), and to analyze their relationship with health-related quality of life.

Design: Cross-sectional study.

Setting: Home of participants.

Quality of life of adult men with Duchenne muscular dystrophy in the Netherlands: implications for care.

Objective: To assess quality of life of adults with Duchenne muscular dystrophy in the Netherlands and to identify domains and major problems influencing quality of life.

Design: Cross-sectional.

Subjects: Seventy-nine men aged ≥ 20 years with Duchenne muscular dystrophy.

Forty-Five Years of Duchenne Muscular Dystrophy in The Netherlands.

Background: Duchenne muscular dystrophy (DMD) is a progressive muscle disease. No curative therapy is currently available, but in recent decades standards of care have improved. These improvements include the use of corticosteroids and mechanical ventilation.

Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy.

Purpose: To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden.

Methods: In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients' level of subjective caregiver burden was measured with the Caregiver Strain Index (CSI) and the Self Rated Burden Scale. A visual analogue scale was used to measure happiness.

An epidemiological description of spinal cord injuries in The Netherlands in 1994.

Study Design: Retrospective descriptive study.

Objectives: To ascertain the incidence of spinal cord injury in The Netherlands.

Methods: From all patients, discharged from a Dutch general hospital in 1994 with the ICD-9 diagnosis code 806 (fracture of the spine with injury of the spinal cord) and 952 (injury to the spinal cord without apparent spinal fracture), a copy of the anonymized medical correspondence was requested.