Charting the territory: Describing the functional abilities of children with progressive neurological conditions.
Kids with progressive brain disease keep the same low skill level for years—write goals for support, not cure.
01Research in Context
What this study did
Deserno et al. (2017) tracked the kids with progressive brain diseases.
They used the Pediatric Evaluation of Disability Inventory every six months for two years.
Parents also rated how much help their child needed at home, school, and play.
What they found
Functional skill scores stayed flat and very low across the whole study.
Caregiver help levels did not budge either.
In short, nothing got worse, but nothing got better.
How this fits with other research
Boets et al. (2011) saw the same flat line with preschoolers who have DCD.
Both studies used the PEDI and found stable, poor scores.
Waizbard-Bartov et al. (2022) looked at autism instead and found half of kids actually changed over time.
That seems opposite, but autism can shift while progressive brain disease usually does not.
So the stability K et al. saw is expected for this group.
Why it matters
Stop waiting for big gains before writing goals.
Plan for long-term support, not short-term fix.
Teach parents to expect plateaus and to value safety, comfort, and participation now.
Use your time to train caregivers, not to chase unlikely skill jumps.
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02At a glance
03Original abstract
AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children's need for caregiver assistance over time, and 3) examine relationships between these children's functional skills and need for caregiver assistance. METHODS: This study involved a longitudinal, descriptive design with three assessments occurring at Baseline, Year 1, Year 2. Functional skills and caregiver assistance were assessed by the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI questionnaire was completed at baseline and then yearly by parents, along with the assistance of a trained research assistant (RA). RESULTS: The study was completed with 83 children (mean age at Baseline=7.1yrs, SD=4.6). Mean Functional skills scores were in the low ranges at Baseline and did not change significantly across time points (F(2, 71)=0.437, p=0.58). Time point had no effect on caregiver assistance ratings (p<0.2); however, children required greater amounts of help with self-care at later time points than for other functional domains. Statistically significant correlations were found between PEDI-Functional skills and caregiver assistance ratings (r=0.80-0.90, p<0.01). CONCLUSIONS: Functional skills were low for these children overall, irrespective of age. In children with PNCs: 1) mean functional skills did not change significantly over time; 2) caregiver assistance scores remained stable and 3) functional skills and levels of caregiver assistance were strongly positively correlated. Further research to explore the long-term functional trajectory in children with a PNC is recommended.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.10.001