Medication Knowledge, Attitudes, and Readiness for Transition to Healthcare Self-Management in ASD

Background: An estimated 30 to 60 percent of individuals with autism spectrum disorder (ASD) take at least one psychotropic medication. Despite widespread use, little is known about child and caregiver knowledge of medication regimens, attitudes towards taking medications, and perceived readiness for medication self-management.  Addressing these questions has significant implications for adherence and treatment outcomes. 

Objectives: To quantify medication knowledge, attitudes, and perceived readiness for transition to healthcare self-management in adolescents with ASD and their parents. 

Methods: Participants were 22 high-functioning adolescents with ASD between 14 and 17, and 22 of their parents. Both groups completed an hour-long interview and electronic survey addressing these topics. Medication knowledge was quantified via survey questions asking for a list of current medications, and reasons for each medication.  Medication attitudes were measured using a modified version of the South Hampton ADHD Medication Behaviour and Attitudes Scale (SAMBA; Harpur et al., 2008). Participants indicated the extent to which they agreed with statements about medication use, via a 32-item, 5-point Likert scale (1=strongly disagree, 5=strongly agree).  Mean subscale scores were calculated, quantifying perceived costs and benefits of medication, patient stigma, and resistance to treatment.  Readiness for healthcare self-management was measured via the Transition Readiness Assessment Questionnaire (TRAQ; Sawicki et al., 2011).  Participants indicated their skill level related to healthcare self-management, via a 20-item, 5-point Likert scale (1=No-I don’t know how, 5=Yes-I always do this when I need to).  Mean subscale scores were calculated, quantifying ability to manage medications, keep appointments, track health issues, and talk with providers. 

Results: The mean number of medications taken by adolescents was 2.68 ((1.94); per parent report) and 1.33 ((1.20) per child report). A reason for taking every medication was provided by 100% of parents, and only 65% of adolescents.  Mean SAMBA scores in both groups indicated a perceived low to moderate cost of medication use (child: 1.94 (.69); parent: 1.40 (.50)), resistance to the medication regimen (child: 1.82 (.63); parent: 1.73 (.54)), and stigmatization (child: 1.89 (.83); parent: 1.51 (.66)), while the benefits of medication were rated as moderate to high (child: 3.79 (.71); parent: 3.93 (.82)). Mean TRAQ subscale scores indicated very limited readiness for healthcare self-management: medication self-management (child: 1.49 (.84); parent: 1.05 (.83)), appointment keeping (child: 0.69 (.80); parent: 0.18 (.29)), healthcare tracking (child: 1.01 (1.06); parent: 0.45 (.66)), and talking to providers (child: 2.25 (1.13); parent: 1.89 (.65)).  Intraclass correlations demonstrated a significant positive relationship between child and parent scores on the SAMBA’s medication benefits subscale (r =.56, p =.04) and the TRAQ’s medication management subscale (r =.72, p =.004); all other correlations between child and parent scores were non-significant. 

Conclusions: These findings suggest that individuals with ASD and their parents regard medication as beneficial, but parents and adolescents agree that adolescents have limited knowledge about their medications and feel unprepared to manage their own healthcare.  These findings emphasize the need for enhanced education around healthcare self-management in transition planning for adolescents with ASD.