Peer-reviewed article
Participation, Service Utilization, and Unmet Needs in Patients With a History of Pediatric Disorder of Consciousness.
Nelliot A, Suskauer S, Slomine BS, Jafri A, Borda A et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study surveyed caregivers of children and adolescents who had experienced disorders of consciousness (prolonged unconsciousness after brain injury) to understand how much these young people participate in daily activities, what health services they use, and what services they still need. Children with better adaptive functioning had higher participation in home, community, and school activities. Most families used medical equipment and saw physicians regularly, but half reported unmet needs, especially for therapy services like physical and speech therapy.
Key points
- Participation scores varied significantly by adaptive functioning level: 36.1 (extremely low), 58.3 (low), and 85.1 (below/broadly average) on the Child and Adolescent Scale of Participation
- 95% of patients used medical equipment; extremely low functioning group had significantly higher needs for wheelchairs, feeding tubes, and suctioning equipment
- 93% received physician services, but therapy services were the most frequently reported unmet need (70% of those with unmet needs)
- 50% of the cohort reported unmet needs, which did not differ by adaptive functioning level
- Mean time since injury was 5.3 years, suggesting these needs persist years after the initial brain injury
Limitations
This is a convenience sample from two rehabilitation institutions, so findings may not represent all children with disorders of consciousness. The study describes service use and needs but does not explain why unmet needs persist or whether barriers are financial, geographic, or related to service availability.
Abstract
Objectives To describe participation, health care service utilization, and unmet needs in patients with a history of pediatric disorders of consciousness (DoCs) by level of adaptive functioning (AF). Design Cross-sectional study using telephone-based surveys and interview. Setting Community. Participants Convenience sample of caregivers of patients with pediatric DoC (mean years since injury=5.3, SD=4.2) admitted to Kennedy Krieger Institute or Brooks Rehabilitation. Interventions Not applicable. Main outcome measure(s) Child and Adolescent Scale of Participation (CASP), telephone-based survey of health care utilization and unmet needs designed for this study. Results Forty-one patients were classified into three AF groups: extremely low functioning (n=15), low functioning (n=17), and below/broadly average functioning (n=9). CASP scores significantly differed in all areas of home, community, and school participation by AF group, with mean current level of participation of 56.1 in all groups and scores of 36.1, 58.3, and 85.1 in the extremely low, low, and below/broadly average AF groups (P<.001). Service utilization was notable for medical equipment use in 95% with significantly different needs for assistive technology in the extremely low functioning group including wheelchairs (P=.034), feeding tubes (P=.002), and suctioning needs (P=.001). Physician service use was high (93%) but did not differ by AF for primary or specialty services. Therapy services were also used uniformly between all groups, except for mental health services, which were used more frequently in the below/broadly average AF group. Unmet needs were present in 50% of the cohort and did not differ by AF. Therapy services were the most frequently reported unmet need (70%). Conclusions Patients with a history of pediatric DoC have substantial participation restrictions, health care service utilization, and unmet needs several years after brain injury.