Psychosocial well-being of adolescents and young adults living with chronic illness.

Abstract

Background: Adolescents and young adults (AYA) living with chronic illness face substantial psychosocial challenges during key developmental transitions, and increasing numbers now receive care in adult hospitals. Yet adult services are often not youth-appropriate, and comparative data on psychosocial burden across disease groups in these settings are needed to guide service planning.

Aim: To describe the psychosocial characteristics of AYA with chronic illness attending different specialist outpatient clinics to better understand their psychosocial well-being and burden of illness experienced by this cohort.

Methods: AYA in eight different specialist outpatient clinics between 2013 and 2020 completed self-report questionnaires that examined demographic, psychosocial, general health and quality-of-life variables. Latent class analysis was used to identify participant psychosocial and mental health profiles, which were compared across clinics.

Results: A total of 452 AYA were recruited from inflammatory bowel disease, cystic fibrosis, rheumatology, phenylketonuria (PKU), cranio-maxillofacial (CMF), renal transplant, diabetes and alcohol and other drugs (AOD) clinics. Participants were between 16 and 25 years of age, with similar proportions of males and females. Overall, latent class analysis revealed three distinct groups of participants based on their psychosocial and mental health profiles: thriving (42.6%), coping (36.5%) and stressed (20.8%). These proportions varied markedly by clinic, with the highest proportion of stressed young people found in the AOD service (88%), followed by rheumatology (51.6%) and renal transplant (31.2%). Conversely, most patients in PKU (57.1%) and CMF (58.6%) were classed as thriving.

Conclusion: While the majority of AYA utilising specialist outpatient services were classed as thriving, significant numbers were struggling and reported high levels of psychosocial stress and challenges in engaging in their communities. These findings varied significantly by clinic and are therefore important in planning services and support for young people living with chronic illness and disability.