If you think that teaching more self-management to adolescents will lead to better outcomes, you might be wrong.  A recent study (RA Annunziato et al. J Pediatr 2018; 193: 128-33) shows that adolescents who reported greater self-management, following liver transplantation, had worse outcomes.

In this study of 9-17 year olds and their parents (213 dyads), the key finding was based on a score derived from the REFILS survey.  REFILS is an acronym for “Responsibility and Familiarity with Illness Survey.”  This survey was curtailed from 22 items to the following 13 items:

• Understands key aspects of liver disease
• Discusses management plan with team
• Self-manages liver regimen
• Knows names/dose of medications
• Keeps track of medications
• Correctly takes medications
• Calls pharmacy for refills
• Knows different types of providers
• Knows date of next appointment
• Makes appointments
• Know insurance details
• Understands insurance plan
• Keeps healthcare records

Key finding:

• “Negative outcomes were more likely to occur if patients reported that they are ‘in charge.’ A higher [REFILS] score, which denotes a higher level of (self-reported) management, was significantly and consistently correlated with worse adherence and organ rejection.”

The implication is that the transition of responsibilities from the parent/caregiver to the adolescent “may in fact not always be indicated or advisable…education about self-care might actually be harming patients…It is probably prudent to discourage rather than encourage adolescents from assuming self-care in some cases.”

My take: While adolescents and young adults are capable in many aspects, there are hardly any that I would trust to care for our dog (see below) for any protracted period.  Thus, in my view, without close parental supervision, entrusting the life of a liver transplant recipient to an adolescent is risky.

Related blog posts:

• Alive and well? 10 years after liver transplantation
• AASLD/NASPGHAN 2014 Guidelines for Evaluation of Pediatric Liver Transplantation
• AASLD Guideline: Long-Term Care for Pediatric Liver Transplantation | gutsandgrowth
• Inequality in Pediatric Health Care | gutsandgrowth

Charlie