A FRANCIS1,2, J HALLORAN1, M BURKE1,2, R FRANCIS1,2, C CORIAS1, G MCGAHAN1,2, S DENNY1,2
1Mater Young Adult Clinic, Mater Hospital, Brisbane, Australia, 2School of Medicine, University of Queensland, Brisbane, Australia
Aim: We aimed to describe the burden of illness in young people with kidney transplants.
Background: Prior research demonstrated increased rates of depression in young adults with kidney transplants but a wide-ranging assessment of burden of illness is lacking.
Methods: The “Burden of Illness” study is a cross-sectional cohort study of adolescents and young adults (15-25 years) with chronic disease at the Mater Hospital from 2018 to 2019. A subgroup of patients with kidney transplants self-reported validated measures assessing depression, anxiety, stress, quality of life, social support and medication adherence.
Results: There were 14 patients, 10 (71%) male, average age 18 (standard deviation 2) years, 11 (79%) Caucasians. The majority (13, 93%) lived at home and none were in a relationship. Eleven (74%) had employment or were undertaking formal education. Psychological distress (7/14, 50%) was frequently reported and 11/14 (79%) reported a low feeling of well-being. Low self-reported quality of life (7/14, 50%) was common, with average scores decreased compared to population norms in the subdomains of social, emotional and physical function. Most (12/14, 86%) reported below-average resilience and 5/14 (36%) reported poor social support. Medication nonadherence was common (7/14, 50%), particularly driven by forgetting to take their medications when they travelled or left home (6/14, 43%) and more general forgetfulness. Only 1 person (7%) chose to self-cease medications.
Conclusions: The burden of illness for adolescents and young adults with kidney transplants is high. Decreased quality of life, poor social support, low well-being and resilience and increased stress are common, as was poor medication adherence. A multidisciplinary clinic can provide structure and support to scaffold young people through this vulnerable time.
Dr Anna Francis is a paediatric nephrologist and clinical researcher. She completed her PhD and Masters in Clinical Epidemiology at the University of Sydney. Dr Francis was awarded a Churchill Fellowship, travelling to Germany, England and Harvard to explore transition programs to adult care for young kidney transplant recipients. She is co-lead in the Young Adult Renal Clinic at the Mater Hospital in Queensland.