Physicians' Self-Perceived Competence on Breaking Bad News to Parents of Children with Neurodisabilities.

Delivering difficult news to parents of children with neurodisabilities, often involving new diagnoses, prognosis changes, or declines in function or health, presents a complex task. Our aim was to assess physicians' self-perceived competence in breaking bad news (BBN) within this context. An online survey was administered to neuropediatricians and developmental and rehabilitation pediatricians in Switzerland. Among 247 invited physicians, 62 (25.1%) responded (age of 51 ± 11 years; M/F ratio of 2:3). They rated their BBN competence at 7.5 ± 1.6 out of 10. Factors significantly associated with self-perceived competence in uni- and multivariate analyses included years of professional experience (≤10 years: 6.2 ± 1.8; >10 years: 8.2 ± 0.8), and region of pregraduate training (Switzerland: 7.3 ± 1.6; European Union: 8.3 ± 0.9). The respondents highlighted the positive roles of professional and personal experience, quality relationships with families, and empathy in BBN. In summary, physicians generally expressed a sense of competence in delivering difficult news to parents of children with neurodisabilities. They underscored the significance of life experiences and certain individual qualities in their effectiveness. These findings provide valuable insights into enhancing professional training and support in this crucial yet underexplored aspect of medical practice.

Hand Ownership Is Altered in Teenagers with Unilateral Cerebral Palsy.

We explored hand ownership in teenagers with unilateral cerebral palsy (UCP) compared with typically developing teenagers. Eighteen participants with UCP and 16 control teenagers participated. We used the rubber hand illusion to test hand ownership (HO). Both affected/non-affected hands (UCP) and dominant/non-dominant hands (controls) were tested during synchronous and asynchronous strokes. HO was assessed by measuring the proprioceptive drift toward the fake hand (as a percentage of arm length) and conducting a questionnaire on subjective HO. Both groups had significantly higher proprioceptive drift in the synchronous stroking condition for both hands. Teenagers with UCP showed a significantly higher proprioceptive drift when comparing their paretic hand (median 3.4% arm length) with the non-dominant hand of the controls (median 1.7% arm length). The questionnaires showed that synchronous versus asynchronous stroking generated a robust change in subjective HO in the control teenagers, but not in the teenagers with UCP. Teenagers with UCP have an altered sense of HO and a distorted subjective experience of HO that may arise from the early dysfunction of complex sensory-motor integration related to their brain lesions. HO may influence motor impairment and prove to be a target for early intervention.

Parent-reported sleep disorders in children with motor disabilities: a comparison with the Sleep Disturbance Scale for Children's new norms.

OBJECTIVE: Children with motor disabilities such as cerebral palsy or neuromuscular diseases present more sleep disorders than their typically developing (TD) peers. However, research on these populations has always been performed using historical normative datasets or controls such as siblings. Therefore, we assessed the sleep quality of children with motor disabilities in comparison with a large, contemporary, general population sample. METHODS: Demographic, medical, and the Sleep Disturbance Scale for Children (SDSC) questionnaires were sent to parents of children aged 4-18 years and followed by our tertiary pediatric neurorehabilitation clinic, and to those of school-aged children in regional primary and secondary schools. TD participant data allowed us to set pathological sleep score thresholds (T score ≥70). RESULTS: We collected 245 responses for children with motor disabilities and 2891 for those from the general population (37% and 26% response rates, respectively). Cerebral palsy was the most frequent diagnosis (N = 109, 44.5%). Children with motor disabilities had significantly more frequent pathological sleep reported in their total SDSC score (7% vs 1.9%, odds ratio (OR) 3.98, 95% confidence interval (CI) 2.17-7.27, p < 0.001) and in five subscores. Single-parent households and drug-resistant epilepsy showed significant positive associations with pathological sleep among children with motor disabilities. For TD peers, parental unemployment and parental nationality were positively associated with pathological sleep. CONCLUSION: This population-based study robustly estimated the prevalence of sleep disorders in children with motor disabilities. Sleep disorders were significantly more frequent in children with motor disabilities, but at a lower frequency than previously reported.

Co-sleeping in school-aged children with a motor disability: a comparative population-based study.

AIM: To determine the prevalence and determinants of co-sleeping in school-aged children with a motor disability compared with the school-aged general population. METHOD: A questionnaire on demographic characteristics and co-sleeping habits, along with the Sleep Disturbance Scale for Children (SDSC), was sent to parents of children aged between 4 years and 18 years followed in our tertiary paediatric neurorehabilitation clinic, and to school-aged children in a representative sample of state schools. RESULT: We analysed responses for 245 children with motor disability (142 males, 103 females; mean age 10y 6mo, standard deviation [SD] 3y 10mo, range 4-18y) and 2891 of the general population (1484 males, 1497 females; mean age [SD] 9y 6mo [3y 5mo], range 4-18y) (response rates 37% and 26% respectively). Cerebral palsy was the most common diagnosis among children with motor disability. Weekly co-sleeping was significantly more common in children with motor disability than in the general population (11.8% vs 7.9% respectively, p=0.032). Special care of the child with motor disability at night, mainly addressing epilepsy, was reported as a cause of co-sleeping by two-thirds of parents. Factors associated with co-sleeping in the motor disability group were age, housing crowding, severe visual impairment, and pathological sleep according to the SDSC. INTERPRETATION: Co-sleeping is common among children with motor disability. It is influenced by personal and medical factors, as well as the requirements for special care at night. Therefore, health professionals should explore sleeping arrangements in families of children with motor disability.

Mirror therapy in children with hemiplegia: a pilot study.

Mirror therapy, which provides the visual illusion of a functional paretic limb by using the mirror reflection of the non-paretic arm, is used in the rehabilitation of hemiparesis after stroke in adults. We tested the effectiveness and feasibility of mirror therapy in children with hemiplegia by performing a pilot crossover study in ten participants (aged 6-14 y; five males, five females; Manual Ability Classification System levels: one at level I, two at level II, four at level III, three at level IV) randomly assigned to 15 minutes of daily bimanual training with and without a mirror for 3 weeks. Assessments of maximal grasp and pinch strengths, and upper limb function measured by the Shriner's Hospital Upper Extremity Evaluation were performed at weeks 0 (baseline), 3, 6 (intervention), and 9 (wash-out). Testing of grasp strength behind the mirror improved performance by 15% (p=0.004). Training with the mirror significantly improved grasp strength (with mirror +20.4%, p=0.033; without +5.9%, p>0.1) and upper limb dynamic position (with mirror +4.6%, p=0.044; without +1.2%, p>0.1), while training without a mirror significantly improved pinch strength (with mirror +6.9%, p>0.1; without +21.9%, p=0.026). This preliminary study demonstrates the feasibility of mirror therapy in children with hemiplegia and that it may improve strength and dynamic function of the paretic arm.

Recent skin injuries in children with motor disabilities.

OBJECTIVE: To determine the frequency of recent skin injuries in children with neuromotor disabilities and its association with disability. DESIGN: Cross-sectional study of 168 children with neuromotor disabilities aged 2-16 years. SETTING: Two outpatient child rehabilitation centres. MAIN OUTCOME MEASURES: Children were classified as unrestricted walkers, restricted walkers or wheelchair dependent. Each participant's body surface was systematically examined for recent skin injuries with the exception of the anal-genital area. RESULTS: The mean age of our sample was 7.8 (SD 3.7) years with a 3:2 male/female ratio. Overall, 64% had cerebral palsy, 17% a neuromuscular disease and 19% other motor disabilities. Participants had on average 5.3 (SD 4.5) recent skin injuries (max 19), of which 2.5 were bruises (SD 3.3, max 16), 2.4 were abrasions, scratches or cuts (SD 3.0, max 16) and 0.4 were pressure lesions (SD 0.8, max 4). There was a significant decrease in the frequency of recent skin injuries and of bruises with increasing severity of motor disability. Most of this variation was accounted for by injuries to the lower limbs. There were no significant effects of gender, learning disabilities or other comorbidities. CONCLUSIONS: Children with neuromotor disabilities present a progressive reduction in the number of skin injuries with decreasing mobility. Therefore, recent skin injuries in this population which are unusual by their number, appearance or distribution, should raise at least the same level of suspicion for physical abuse as in children without disabilities.

Use of a dynamic foot pressure index to monitor the effects of treatment for equinus gait in children with cerebral palsy.

The purpose of this study is to introduce and describe a newly developed index using foot pressure analysis to quantify the degree of equinus gait in children with cerebral palsy before and after injection with botulinum toxin. Data were captured preinjection and 12 weeks postinjection. Ten children aged 2(1/2) to 6(1/2) years took part (5 boys and 5 girls). Three of them had a diagnosis of spastic diplegia and 7 of congenital hemiplegia. In total, 13 limbs were analyzed. After orientation and segmentation of raw pedobarographic data, we determined a dynamic foot pressure index graded 0 to 100 that quantified the relative degree of heel and forefoot contact during stance. These data were correlated (Pearson correlation) with clinical measurements of dorsiflexion at the ankle (on a slow and fast stretch) and video observation (using the Observational Gait Scale). Pedobarograph data were strongly correlated with both the Observational Gait Scale scores (R = 0.79, P < 0.005) and clinical measurements of dorsiflexion on a fast stretch, which is reflective of spasticity (R = 0.70, P < 0.005). We demonstrated the index's sensitivity in detecting changes in spasticity and good correlation with video observations seems to indicate this technique's potential validity. When manipulated and segmented appropriately, and with the development of a simple ordinal index, we found that foot pressure data provided a useful tool in tracking changes in patients with spastic equinus.

The characteristics of gait in Charcot-Marie-Tooth disease types I and II.

Certain typical gait characteristics such as foot-drop and foot supination are well described in Charcot-Marie-Tooth disease. These are directly related to the primary disease and due to the weakness of ankle dorsiflexors and everters characteristic of this hereditary neuropathy. We analysed 16 subjects aged 8-52 years old (11 with type I, 5 with type II Charcot-Marie-Tooth disease) using three-dimensional gait analysis and identified kinematic features previously unreported. These patients showed a combination of tight tendo achillei, foot-drop, failure of plantar flexion and increased foot supination, but also presented with excessive internal rotation of the knee and/or tibia, knee hyperextension in stance, excessive external rotation at the hips and decreased hip adduction in stance (typical of a broad based gait). These proximal features could have been an adaptation to or consequence of the disrupted ankle and foot biomechanics, however a direct relation to the neuropathy is also possible since sub-normal muscle power was observed at the proximal levels in most subjects on both manual testing and kinetic analysis. Gait analysis is a useful tool in defining the characteristic gait of patients with Charcot-Marie-Tooth disease.

A pilot study of delayed versus immediate serial casting after botulinum toxin injection for partially reducible spastic equinus.

BACKGROUND: Serial casting is often prescribed after botulinum toxin injections to improve joint ranges of motion and to potentiate the decrease in hypertonia. The aim of this study was to compare delayed versus immediate serial casting as an adjunct to botulinum toxin therapy for partially reducible spastic equinus. METHODS: Twelve children who presented spastic equinus associated with mild gastrosoleus contracture took part. Five of them had a diagnosis of spastic diplegia, whereas 7 had a diagnosis of congenital hemiplegia. Children were randomized to immediate serial casting (same day) or delayed serial casting (4 weeks later) after botulinum toxin injection to their gastrosolei. Casts were replaced weekly for 3 weeks. RESULTS: Three children complained of pain that required recasting in the immediate casting group versus none in the delayed casting group (P = 0.08). At 3 months, there was a 27-degree improvement in the fast dorsiflexion angle (Tardieu R1) in the delayed casting group versus 17 degrees in the immediate casting group (P = 0.029). At 6 months, a 19-degree improvement persisted in the delayed group compared with 11 degrees in the immediate group (P = 0.010). CONCLUSIONS: There is a clear benefit in delaying serial casting after the injection of botulinum toxin in the recurrence of spasticity at the gastrosoleus that may also offer an advantage regarding the incidence of painful episodes associated with casting. Most importantly, reducing the recurrence of spasticity by delayed serial casting may offer the possibility of decreasing the frequency of botulinum toxin reinjections.