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TopChronic Kidney Disease (Ckd)
Chronic Kidney Disease (CKD) is a long-term condition and has been described as the gradual, and usually permanent, loss of kidney function over time (Fogo 2007). Literature has explored different concepts of coping (Muhammad et al. 2012a) and a review has summarized how young people cope with CKD (Muhammad et al. 2012b). Positive coping may also be important potentially allowing a smoother transition. More recent research has informed that coping in young people needs to be better understood (In press, Muhammad et al. 2015). There is also evidence to suggest that rates of acute rejection are higher when young people transition from paediatric renal care to adult renal services (Harden et al. 2012). By implementing an integrated transition clinic, coupled with improving healthcare experiences, can improve young people’s adherence to regular medication as judged by reduced transplant failure rates (Harden et al. 2012).
The ability to treat young people with chronic disease, coupled with the inability to offer an absolute cure, causes ongoing complications in young people with CKD (Fowler and Baas 2006; Eiser and Jenney 2007; Eiser et al. 1999). There are good examples of toolkits and frameworks allowing commissioners and providers to evaluate quality criteria or generic standards for health services for young people with a range of health conditions (including the Department of Health, Quality Criteria for Young People Friendly Health Services, 2011).There are also evaluation instruments that specifically explore the care of young people with kidney disease (as listed in Eiser & Morse 2001). The British Association for Paediatric Nephrology (BAPN) has also developed a series of questionnaires to evaluate the experiences of young people and their families in the care of young people on HD, PD and with kidney transplants (BAPN 2011).
Although patient reported experience measures (PREMS) can provide a helpful indication of patients’ and their carers’ perspectives on their care, by their nature these reflect the process rather than the outcome.