Evaluation of treatment compliance and psychosocial status in adult phenylketonuria patients

Yesil A. Evaluation of Treatment Compliance and Psychosocial Status in Adult Phenylketonuria Patients. Istanbul University, Institute of Health Sciences, Department of Pediatric Basic Sciences. Master of Science Degree Thesis. Istanbul, 2020 Keywords: Phenylketonuria, Adult, Treatment Compliance, Psychosocial Status Background: Treatment non-compliance can be seen in adult phenylketonuria patients and this can lead to neurocognitive impairments and psycosocial problems. In our study, we aimed to evaluate the treatment compliance and psychosocial status in adult phenylketonuria patients. Materials and Method: Adult phenylketonuria patient records (n=100) have been reviewed retrospectively and a telephone survey has been applied. Results: Average age of adult phenylketonuria patients was 24,5±5,5. 83% of patients had mild phenylketonuria, 51% had a diagnosis in the last 3 months, 47% were undergoing a therapy, 37% had at least one comorbidity, 49% had a history of another disease, 37% were studying/graduated university, 92% were single, 32% were employed, 36% had an occupation, 71% were financially supported by their fathers, 40% were doing excersises. Nervousness was the highest, aggression was the lowest and stubbornness was the most "common" complaint with 75%, 23% and 36%, respectively. Stubbornness was significantly higher in the Mild Phenylketonuria group; whereas inability to achieve something on their own, having no friends and being alone was significantly higher in the Classic Phenylketonuria group (p=0,012; 0,013; 0,042 respectively). Difficulty in learning, impairment in concentrating, inadvertence, agitation, restlesness, inability to achieve something on their own, having no friends and being alone were significantly higher in the group with a diagnosis later than 3 months after onset of the disease (p=0,003; 0,006; 0,004; 0,037; 0,019; 0,000; 0,000 respectively). Nervousness was observed 100% in the Treatment Non-compliant group, which was significantly higher (p=0,028). Conclusion: Stubbornness was significantly higher in the Mild Phenylketonuria group; whereas inability to achieve something on their own, having no friends and being alone was significantly higher in the Classic Phenylketonuria group. Difficulty in learning, impairment in concentrating, inadvertence, agitation, restlesness, inability to achieve something on their own, having no friends and being alone were significantly higher in the group with a diagnosis later than 3 months after onset of the disease; and nervousness was significantly higher in the Treatment Non-compliant group.