Predictors of Behavioral Health Treatment Continuation and Adherence in Children with Autism Spectrum Disorders

Background: Behavioral Health Treatments (BHT) based on the principles of Applied Behavioral Analysis (ABA) can improve many of the core difficulties in autism spectrum disorders (ASD) including social deficits and restricted, repetitive behaviors. While ABA-based treatments are commonly recommended for children with ASD, little is known about how many families continue treatment once they start, nor about characteristics that predict adherence to and continuation of recommended treatment.

Objectives: To identify factors that are associated with continuation of and adherence to BHT in a large, diverse population of insured patients with ASD.

Methods: This cross-sectional study included 226 Kaiser Permanente Northern California members aged 2-18 years old with ASD referred for BHT between February and May 2014. Patients had to receive at least 2 consecutive weeks of billed BHT during the study period to be included. We conducted analyses to explore the associations between socio-demographic factors (child sex, race/ethnicity, age at referral to BHT, type of health insurance, copay amount, maternal age at referral to BHT, maternal and paternal education) and clinical factors (medical complexity, psychiatric medication use, receipt of additional therapies) and the binary outcomes of interest: continuing treatment for at least 12 months and treatment adherence (receipt of >=80% of the authorized treatment hours).

Results: Median age at referral to BHT was 6.0 years (40% < 5 years, 15% 12+ years). The majority of patients were male (83%), and had employer or self-funded insurance (95%), $20 copay or less (78%), mother >30 years of age (91%), and mother (78%) and father (73%) with undergraduate or post-graduate education; race ethnicity was mixed (36% white, 22% Hispanic, 29% Asian, 14% Black/Other). Among patients who initiated BHT, 69% (N=155) continued treatment for at least 12 months. Patients who continued vs those who discontinued BHT were similar with respect to sex, race/ ethnicity, insurance coverage type, medical complexity, and receipt of other treatments including psychiatric medication and rehabilitative services. Patients who continued treatment had a significantly younger median age at referral for BHT (6.0 years vs 7.3 years, p=0.04), were less likely to have psychiatric comorbidities (19% vs 41%, p<0.01) or genetic syndromes (4% vs 16%, p<0.01), had a shorter interval between treatment authorization and treatment initiation (p=0.05), and were more likely to receive >10 hours/ week of BHT (48% vs 14%, P<0.01) than patients who discontinued treatment. Only 15% of patients who initiated treatment adhered to treatment recommendations. Younger age at referral for BHT (p=0.049) and receipt of >10 hours/ week of BHT (76% vs 38%, p<0.01) were significantly associated with adherence to treatment.

Conclusions: Nearly one third of patients discontinued treatment within the first 12 months of starting and only 15% of families were able to adhere to their child’s recommended treatment regimen. Our findings suggest that children who are older, who have psychiatric comorbidities or genetic syndromes, who take longer to initiate treatment, or receive less than 10 hours/ week of BHT are most likely to struggle with continuation of and adherence to treatment, and may need additional attention.