Skip to main content

Table 1 Renal transplantation

From: Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

A number of rare conditions such as renal dysplasia, cystinosis, focal segmental glomerulosclerosis, reflux nephropathy, post urethral valves and nephronophthisis may lead to babies being born with poorly developed kidneys or developing significant kidney damage in childhood [10]. These patients may require a renal transplant at some point to improve their chances of survival and quality of life [11].
In the UK, the five-year graft survival rates following the first adult deceased and live donor kidney transplant are 86 and 92% respectively [12].
However, coping with the demands of preserving a renal transplant can be challenging for adolescents especially during the transition from paediatric to adult care [13]. There is a high rate of graft failure and acute or chronic rejection due to poor adherence to prescribed medical regimen [14]. Studies have found that the transitioning process may increase the risk of allograft loss [15]. Rejection episodes may be life threatening to patients and a significant burden to the health system [16].