Phenylketonuria (PKU) is an inborn error of metabolism that is primarily treated with a severely restricted, low-protein diet to prevent permanent neurological damage. Despite the recognition of the importance of strict dietary adherence in the prevention of intellectual impairment in individuals with PKU, apathy and attrition from diet, especially during adolescence, remain a threat to normal development in this population. This study’s aim was to examine adolescents’ perception of factors that encourage or inhibit their dietary adherence.
This was a qualitative study, with the authors using thematic analysis to interpret the findings.
The study was conducted as part of a Metabolic Disorders Association conference.
Eight adolescents with PKU were recruited through convenience sampling.
A focus group was conducted with the adolescents to gather information about factors that encourage and discourage dietary adherence.
Thematic analysis revealed that the adolescents encountered problems explaining the nature and food requirements of their condition to other people. Friends, family, and wanting to maintain “normal” cognitive abilities were identified as factors that encouraged dietary adherence.
Adolescents with PKU appear to share several barriers and incentives for maintaining the strict dietary regimen.
Considering such perceptions may aid future interventions aiming to reduce diet attrition rates among adolescents.