This study evaluated the inter-observer reliability and stability over time of the Eating and Drinking Ability Classification System (EDACS) for children and young people with cerebral palsy (CP). Method: Case-records for 97 children with CP were examined to collect retrospective data about eating and drinking abilities, at four time-points, minimum 2 years between each time-point. Sex, Gross Motor Function Classification System (GMFCS) level, presence of feeding tube and orthopaedic issues were recorded from case-records. One speech and language therapist (SaLT1) classified eating and drinking ability using EDACS for all cases at all time-points; SaLT2 assigned EDACS levels for 50 cases at time-point 1; SaLT3 assigned EDACS levels for 24 cases at all time-points. Inter-observer reliability and stability over time were assessed using Intraclass Correlation Coefficient (ICC). Associations between EDACS levels and functioning recorded with other Functional Classification Systems (FCSs) were calculated using Kendall's tau (τ). Results: Out of 97 children, 48 were male, 48 had feeding tubes, and 83 had orthopaedic issues. ICC for EDACS levels recorded by SaLT1 across all time-points was 0.97 (95%CI 0.96-0.98); changes in EDACS levels occurred infrequently and never by more than one level. ICC between SaLT1 and SaLT2 at time-point 1 was 0.8 (95%CI 0.67-0.89); ICC between SaLT1 and SaLT3 across all time-points was 0.95 (95%CI 0.92-0.98). Association between GMFCS and EDACS was moderate (τ = 0.58).
Background Non ambulant children with cerebral palsy are at risk of progressive neuromuscular scoliosis, typically deteriorating during pubertal growth spurt. We present 2 girls in whom sudden deterioration of scoliosis, in retrospect, marked pubertal growth spurt, despite no evidence of usual secondary sexual characteristics or biochemical changes. Recognition of this allowed definitive spinal surgery to go ahead at the optimum time. Method Notes and Xray review. Results Case 1: This female child had severe cerebral palsy due to documented hypoxic ischaemic encephalopathy. From 7.5 years, there was sudden worsening of the scoliosis over the next 18 months (Cobb angle of 600 progressed to >1000). She had been investigated for early puberty and had no clinical secondary sexual characteristics or biochemical evidence of precocious puberty. She underwent spinal fusion at just 8.8 years; subsequently she developed typical secondary sexual characteristics and menarche at 9.0 years. Case 2: This female child had severe cerebral palsy secondary to epileptic encephalopathy. Precocious puberty was evident aged 6 and she commenced GnRH analogue therapy (Decapeptyl 11.25 mg, 10 weekly). From 8.0 there was rapid worsening of her scoliosis with Cobb angle of 490 progressing to 920 two years later. Clinical & biochemical assessment suggested her precocious puberty to be well controlled. She underwent spinal fusion at 11 years, and developed secondary sexual characteristics soon after this. Discussion Definitive scoliosis surgery is rarely considered before the teenage years, as it is assumed the spine has still to undergo its peak growth associated with puberty. However if correction is delayed after peak growth, the scoliosis curve stiffens, making the surgery more challenging to perform. The timing of puberty in children with severe disabilities can be hard to predict. Rapid progression of scoliosis indicated that spinal growth was occurring despite lack of usual secondary sexual characteristics associated with puberty. Treatment with GnRH analogues in the second case did not avoid skeletal sequelae of early puberty. Conclusion Awareness of the skeletal manifestations in puberty can facilitate appropriate early operative management, halting further progression of scoliosis and its complications.
Results Questionnaires were completed by 25 participants (n=16 professionals, n=5 parents, n=4 young people). Data that were perceived to be most beneficial (by all groups) were appointment scheduling, medication lists and transition information. Young people and their parents also perceived that viewing clinical correspondence, blood tests and radiology reports would be highly beneficial. A comparison between stakeholder groups identified that young people and parents were significantly more likely to perceive benefits associated with being able to view laboratory and radiology data than professionals (p<0.05).Clinicians perceived that there was a higher degree of risk associated with the inclusion of nearly all data items. These differences were statistically significant (p<0.05) in relation to next of kin and contact details, laboratory, radiology and appointment scheduling data.Analysis of qualitative feedback provided by health professionals identified that there may be specific risks associated with displaying next of kin and contact details, relating to concerns around safeguarding. Conclusions Professionals involved in providing paediatric care perceive that there are more significant risks and fewer, less significant benefits associated with paediatric patient portals than young people and their carers. Discrepancies in perceived risk and benefit should be explored to ensure that future implementations of paediatric patient portals are acceptable to key stakeholders.
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