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Published on: March 22, 2017
Follow-up of children who received complex invasive therapies early in life
Reg Sauve1, Charlene Mt Robertson
1Departments of Pediatrics and Community Health Sciences, University of Calgary, and Alberta Children's Hospital, Calgary.
Insights
This review examines outcomes for children receiving complex pediatric therapies in Alberta. While serious conditions are rare, developmental delays are common, aiding parent counseling and outcome improvement efforts.
Area of Science:
- Pediatric Medicine
- Rehabilitation Therapy
- Clinical Outcomes Research
Background:
- Complex pediatric therapies are crucial for infants and children with serious health conditions.
- Standardized outcome assessment is essential for evaluating the effectiveness of these therapies.
- Existing literature and registry data provide insights into patient trajectories.
Purpose of the Study:
- To review existing literature on outcome assessment in complex pediatric therapy programs.
- To discuss enrollment and assessment processes within the Complex Pediatric Therapies Registry in Alberta.
- To analyze outcomes and predictors of adverse events in infants and children receiving complex therapies.
Main Methods:
- Systematic review of published literature on pediatric therapy outcomes.
- Analysis of data from the Complex Pediatric Therapies Registry in Alberta.
- Longitudinal follow-up of 483 infants and children surviving to discharge.
Main Results:
- High compliance rates (≥96%) observed at baseline, 18 months, and 4 years.
- Cerebral palsy, blindness, and deafness were rare among the study population.
- Developmental delay and borderline cognitive function were more frequently observed outcomes.
Conclusions:
- Complex pediatric therapies can lead to positive outcomes with rare severe impairments.
- Identification of predictors for adverse outcomes allows for improved parent counseling.
- Ongoing assessment and data collection are vital for refining therapeutic interventions and improving child development.
Abstract:
The present article reviews existing literature and outcome assessment processes used in programs that provide various complex paediatric therapies. The published literature is summarized, and enrolment and assessment details used in the Complex Paediatric Therapies Registry in the province of Alberta are discussed. Several studies have reported the outcomes of infants and children who received various complex invasive therapies. Four hundred eighty-three infants and children who received specific complex therapies in Alberta and survived to discharge were enrolled in neonatal follow-up programs in their home provinces. Compliance rates are 96% or higher at baseline, 18 months and four years of age. In general, cerebral palsy, blindness and deafness are very rare, but developmental delay and borderline cognitive function are more frequent. Analysis of the predictors of the adverse outcomes of such infants has permitted optimal parent counselling and initiation of efforts to improve outcomes.
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