Background: Living with end-stage kidney disease (ESKD) is complex for young adults who experience difficulties with adherence to medications and attainment of social markers of adulthood.
Methods: We studied adult outcomes (education, employment and accommodation) and evaluated adherence in young adults (age 16-30 years) according to paediatric (<16 years) and adult presentation (16-30 years) of ESKD. Initial questionnaire surveys were undertaken with patients (n = 931) identified from the databases of 12 adult and two paediatric nephrology programmes in England.
Results: Young adults (n = 296, 52 % male, 79 % Caucasian and 73 % with functioning renal allograft) with a mean age at first presentation of ESKD and current age of 17 and 25 years, respectively, were surveyed, of whom 5 % still attended paediatric services. Outcomes of patients aged >23 years and in stable health (n = 146) were compared between paediatric and adult presentation, with 30 and 20 % of patients, respectively, registered as disabled (p = 0.02). Educational attainment, based on percentage of those not achieving the General Certificate of Secondary Education (GCSE) level for England, was lower in the paediatric presentation group than in the adult one (7 vs. 18 %, respectively; p = 0.04). Compared to adult presentation patients, paediatric presentation patients were less likely to have full or part time paid work (57 vs. 76 %; p = 0.2). They also tended to be less likely to be living independently, less likely to be living with a partner, and, if living with their parents, more likely to be living in rented accommodation. Only 10 % patients missed taking medication weekly or more often. A higher frequency of missing medication was related to dialysis patients (p = 0.05), who assigned lower importance to taking medication (p < 0.001). However, patients aged <23 years attached less importance to complying with advice about treatment and health (p = 0.02), especially those who presented with ESKD during childhood (p = 0.01).
Conclusions: Among our study cohort, young adults who presented with ESKD during childhood have poorer social and educational attainment compared to their counterparts who presented in adulthood. Adherence to medications remains important to ESKD patients. However, young adults wish to have personal control over their own life and health and need additional support and healthcare advice from the multi-disciplinary team. Qualitative work is required to understand the meaning of these outcomes on the quality of life for each individual patient.