Service use and family-centred care in young people with severe cerebral palsy: a population-based, cross-sectional clinical survey.

PURPOSE: To assess healthcare use and family perception of family-centred care in children and young adults with severe cerebral palsy (CP) within a geographical region of the UK. METHOD: Young people (4-27years) with severe forms of CP; Gross Motor Function Classification System levels IV and V, were recruited via an established case register. Data were collected in the participant's home using a standardised background proforma and validated questionnaires. The Measure of Processes of Care was used to assess the family's perception of family-centred care. RESULTS: One-hundred and twenty-three children, young people and their families/guardians participated. Results showed high accessing of specialist services in childhood with a considerable decrease in young adults. Use of generalist services remained relatively constant. The reported use of formal respite services and support groups/youth clubs was relatively poor. Family-centred care was poor in the area of "providing general information" (2.8 ± 1.73) but more moderate in the areas of "providing specific information about the young person" (4.2 ± 1.94), "enabling and partnership" (4.2 ± 1.9), "co-ordinated and comprehensive care" (4.3 ± 1.95) and "respectful and supportive care" (4.7 ± 1.75). CONCLUSIONS: The accessing of specialist services and respite care notably decreases amongst adolescents with severe forms of CP and the perception of family-centred care amongst families was fair at best. In particular, the results highlight the need for families to be provided with more general information and advice. Implications for Rehabilitation In a quest to enhance the rehabilitation process in young people with severe forms of cerebral palsy: Commissioners and service providers need to a adopt a more rationalised, needs led approach to service provision across the lifespan of people with severe forms of cerebral palsy, to include an effective and efficient transitional period. Habilitation specialists working with young adults need to continue to recognise the importance of family-centred care in managing this complex and chronic condition. Professionals working within the healthcare system must provide better communication and improve their dissemination of information to the families of children and young people with complex needs.

Intensive rehabilitation combined with HBO2 therapy in children with cerebral palsy: a controlled longitudinal study.

OBJECTIVE: The present study aimed to assess the effect of intensive rehabilitation combined with hyperbaric oxygen (HBO2) therapy on gross motor function in children with cerebral palsy (CP). METHODS: We carried out an open, observational, platform-independent study in 150 children with cerebral palsy with follow-up over eight months to compare the effects of standard intensive rehabilitation only (control group n = 20) to standard intensive rehabilitation combined with one of three different hyperbaric treatments. The three hyperbaric treatments used were: air (FiO2 = 21%) pressurized to 1.3 atmospheres absolute/atm abs (n = 40); 100% oxygen pressurized at 1.5 atm abs (n = 32); and 100% oxygen, pressurized at 1.75 atm abs (n = 58). Each subject assigned to a hyperbaric arm was treated one hour per day, six days per week during seven weeks (40 sessions). Gross motor function measure (GMFM) was evaluated before the treatments and at two, four, six and eight months after beginning the treatments. RESULTS: All four groups showed improvements over the course of the treatments in the follow-up evaluations (p < 0.001). However, GMFM improvement in the three hyperbaric groups was significantly superior to the GMFM improvement in the control group (p < 0.001). There was no significant difference between the three hyperbaric groups. CONCLUSION: The eight-month-long benefits we have observed with combined treatments vs. rehabilitation can only have been due to a beneficial effect of hyperbaric treatment.

Quantitative comparison of cortical and deep grey matter in pathological subtypes of unilateral cerebral palsy.

AIM: The aim of this study was to quantify grey matter changes in children with unilateral cerebral palsy (UCP), differentiating between cortical or deep grey matter (CDGM) lesions, periventricular white matter (PWM) lesions, and unilateral and bilateral lesions. METHOD: In a cross-sectional study we obtained high resolution structural magnetic resonance images from 72 children (41 males, 31 females, mean age 10y 9mo [SD 3y 1mo], range 5y 1mo-17y 1mo) with UCP (33 left, 39 right hemiplegia; Manual Ability Classification System level I n=29, II n=43; Gross Motor Function Classification System level I n=46, II n=26), and 19 children with typical development (CTD; eight males, 11 females, mean age 11y 2mo [SD 2y 7mo], range 7y 8mo-16y 4mo). Images were classified by lesion type and analyzed using voxel-based morphometry (VBM) and subcortical volumetric analysis. RESULTS: Deep grey matter volumes were not significantly different between children with CDGM and PWM lesions, with the thalamus, putamen, and globus pallidus being reduced unilaterally in both groups compared with CTD (p≤0.001). Children with CDGM lesions additionally showed widespread cortical changes involving all lobes using VBM (p<0.01). Children with bilateral lesions had reduced thalamus and putamen volumes bilaterally (p<0.001). The thalamic volume was reduced bilaterally in children with unilateral lesions (p=0.004). INTERPRETATION: Lesions to the PWM cause secondary changes to the deep grey matter structures similar to primary changes seen in CDGM lesions. Despite having a unilateral phenotype, grey matter changes are observed bilaterally, even in children with unilateral lesions.

Cerebral palsy: classification, diagnosis and challenges of care.

This article aims to build capacity between nursing and allied healthcare practitioner staff in highlighting the unique challenges that caring for people with cerebral palsy (CP) brings. It gives an insight into how CP is classified and diagnosed, and briefly outlines issues of political correctness in labelling people with this condition. It covers the complexities of brain development in people with CP, with consideration of the key aetiological contributors to the incidence of the condition. A straightforward approach to unravelling the classification of movement disorders in CP is adopted. It concludes that a multidisciplinary approach to the management of CP, with the nurse at the centre of this holistic approach to patient care, is pivotal to future healthcare provision.

Electrical stimulation in the management of spastic deformity.

This article outlines a nonsurgical approach that includes neuromuscular electrical stimulation and dynamic bracing for the management of spastic deformity in cerebral palsy. Neuromuscular electrical stimulation is used commonly for lower extremity spasticity. Its clinical application in upper extremity spasticity, together with dynamic bracing, is a new entity providing predictable and quick short-term results with significant improvement in quality of life.

Doing play: competency, control, and expression.

This qualitative study investigated the personal experiences of children with cerebral palsy engaging in a virtual reality play intervention program. The study involved in-depth, focused interviews that were conducted with 19 participants aged 8-13 who had a diagnosis of cerebral palsy. A constant comparative inductive method of analysis was used, and several themes emerged. Findings were interpreted using the theory of flow, the theory of self-efficacy, and the model of playfulness in virtual reality computer interactions. The three themes uncovered in the data include (a) doing play, (b) it's my way that matters, and (c) how I see me. The sub-theme safety also emerged. Findings from this study showed that children with physical disabilities are often limited in their play experience compared to their peers without physical disabilities. Children perceived engagement in a virtual reality play intervention program as an enjoyable experience which increased their self-competence and self-efficacy. Participants experienced a sense of control and mastery over the virtual environment and were provided a safe way to explore and challenge their abilities. Participants perceived experiencing flow and reported perceived physical changes and increased social acceptance from both peers and family. These findings provide evidence that virtual reality continues to show promise as a pediatric rehabilitation play intervention tool.

Developmental disabilities: epilepsy, cerebral palsy, and autism.

This article provides the dentist with a review of the three developmental disabilities that do not have mental retardation as a diagnostic component: epilepsy, cerebral palsy, and autism. Discussion focuses on diagnostic criteria and other dental and medical considerations. A greater understanding of developmental disabilities allows the dentist to offer care in the dental office when feasible or to understand and develop referral relationships with colleagues who utilize the hospital operating room to provide comprehensive care.

Effects of Johnstone pressure splints combined with neurodevelopmental therapy on spasticity and cutaneous sensory inputs in spastic cerebral palsy.

The purpose of this study was to investigate the effectiveness of Johnstone pressure splints (JPSs) on spasticity and cutaneous sensory inputs in children with spastic cerebral palsy (CP). Thirty-four children with spastic diplegic CP participated in this study. Children whose motor development levels were similar were divided into a treatment and a control group. Each group consisted of 17 participants (six females and 11 males). Mean age of the treatment group was 48.82 months (SEM 4.42), and the control group, 47.52 months (SEM 5.27). The treatment group underwent Bobath's neurodevelopmental therapy (NDT) combined with JPSs. The control group underwent NDT alone five days a week for three months. Before and after treatments, lower-extremity passive range of motion (ROM) by goniometric measurements, spasticity by Modified Ashworth Scale (MAS), and somatosensory evoked potentials (SEPs) were measured. Passive ROM showed significant improvements in both groups (p<0.01). In the treatment group, all MAS scores increased. In the control group, the difference was significant except for values of internal rotator muscles. Improvements in passive ROM in the treatment group were significantly higher than the control group except in hip abduction and external rotation (p<0.05). MAS scores of the treatment group were significantly higher than the control group (p<0.05). SEP values increased in both groups but values of the treatment group were significantly higher than the control group (p<0.05).

[Functional neurosurgery of cerebral palsy]. / La neurochirurgie fonctionnelle de l'infirmité motrice d'origine cérébrale.

In 1983, approximately 40 000 patients in France and 5 760 patients in Switzerland suffered from cerebral palsy, representing more than 0.1% of their respective populations. The functional disability of these patients is particularly impressive and emphasizes the medical, social and economic importance of this problem. The term cerebral palsy is restricted to non-progressive disorders of motor function, already observed at an early age and due to cerebral lesions. These motor disorders can be of paretic, dystonic and dyskinetic nature. Their epidemiology, classification, etiology, pathology, early diagnosis and evolution are extensively reviewed by Th. Deonna. The difficulty in evaluation of treatment is the absence of a generally accepted rating scale. G. Broggi has proposed one on the basis of a large experience which could serve in the future for more objective evaluation. This monograph is devoted to the functional neurosurgical treatment of cerebral palsy. Physiotherapy and rehabilitation are part of the basic treatment of cerebral palsy, and must be continued after any neurosurgical treatment. Various conservative methods of treatment and their neurophysiological rationale are mentioned by P. Claverie. Some technical devices which improve the neurological deficits and facilitate rehabilitation are presented. Radiculotomies and neurotomies are probably the oldest neurosurgical operations for the treatment of spasticity. The neurophysiological and neuroanatomical basis of this therapeutic approach are treated in the review of the material from the neurosurgical department of Montpellier. Sixty cases were collected and the results analysed according to the type of operation (posterior radiculotomy, anterior radiculotomy, mixed) performed. Stereotactic thalamotomies and subthalamotomies are believed to be the best neurosurgical method to treat the tremor and improve other dyskinesias and hyperkinesias. The technique and a personal review of 49 cases of cerebral palsy are presented. The long-term follow-up in this study demonstrates that this type of operation markedly improves the functional disability of patients with moderate hyperkinesias, moderately improves patients severely affected, but also demonstrates that possible side effects cannot be ignored. Review of the literature indicates the difficulty in interpretation of results due to a lack of objective evaluation. Nevertheless, stereotactic thalamotomy can still be recommended when tremor and rigidity are the most prominent symptoms. Stereotactic dentatotomies in the treatment of spasticity were very popular 20 years ago, but have been largely forgotten for nearly a decade.(ABSTRACT TRUNCATED AT 400 WORDS)