Participation, Service Utilization, and Unmet Needs in Patients With a History of Pediatric Disorder of Consciousness.

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.