Disease control, psychiatric comorbidity, health-related quality of life, and experiences of care during transition to adult healthcare: a single-center prospective study

Abstract

<p>This work aims to study the changes in disease control during the transition to adult healthcare and the associations of disease control and psychiatric comorbidity with health-related quality of life (HRQoL) and experiences of care. Participants were adolescents and young adults (AYAs) with various chronic conditions, recruited from the New Children’s Hospital in Helsinki, Finland. Data were collected before and 1 and 2 years after the transfer of care. Disease control was measured by predefined criteria and categorized as good, moderate, or poor. Psychiatric diagnoses were obtained from medical records. HRQoL was assessed using the Pediatric Quality of Life Inventory and the 16D instruments, while experiences of care were evaluated with questions from the Adolescent Friendly Hospital Survey. Of the 253 AYAs, 199 (79%) and 172 (68%) completed surveys 1 and 2 years after the transfer of care. The mean ages were 17.2, 18.3, and 19.8 years, respectively. Disease control was determined for 251 (99%) AYAs before transfer, 206 (81%) 1 year after, and 208 (82%) 2 years after the transfer of care. Disease control remained stable in most AYAs after transfer (good disease control: <em>n</em> = 70 (28%) before transfer, <em>n</em> = 94 (46%) 1 year, and <em>n</em> = 87 (42%) 2 years after the transfer of care) and showed no association with HRQoL or experiences of care. AYAs without psychiatric comorbidity had better disease control and HRQoL compared to those with a psychiatric diagnosis.</p><p>Conclusion: <br></p><p>Disease control in AYAs with chronic conditions remained stable throughout the transition to adult healthcare. Psychiatric comorbidity is an important contributor to inferior disease control and HRQoL across the transfer of care. </p>