Provider assessment of caregiver reliability in preparation for intrathecal baclofen use in pediatric conditions

PurposeThis qualitative study explored how physicians assess caregiver reliability when determining eligibility for intrathecal baclofen (ITB) therapy in non-ambulatory children with cerebral palsy (CP) and how barriers can be surmounted. Caregiver reliability is critical for patient safety and treatment success.MethodsTwenty-two providers across five pediatric specialties were interviewed, focusing on decision-making regarding ITB in children with CP characterized as Gross Motor Function Classification System IV-V. A conventional content analysis approach was employed, with codes developed inductively by a multidisciplinary team.ResultsProviders consistently cited caregiver reliability as a key factor in determining ITB eligibility. Reliability was often inferred from proxies such as geographic distance to care, social situation, and socioeconomic status. Providers acknowledged relying on "gut instinct" in the absence of standardized assessments. Suggested solutions to mitigate barriers included use of home health agencies, integration of social workers, and caregiver education programs.ConclusionWhile ITB can greatly benefit children with CP, its success hinges on caregiver reliability. Providers often use subjective or indirect indicators in their assessments, raising concerns for bias and inequitable access. A standardized, multidisciplinary evaluation process, such as the one proposed here, could improve fairness and outcomes in ITB patient selection. Future research should identify objective, evidence-based indicators of caregiver reliability.