Coping and Transition in Young People With Chronic Kidney Disease (CKD) – Maintaining Best Practice: Paediatric Nephrology

Coping and Transition in Young People With Chronic Kidney Disease (CKD) – Maintaining Best Practice: Paediatric Nephrology

Shahid Muhammad
DOI: 10.4018/978-1-5225-7122-3.ch021
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Most young people coping with Chronic Kidney Disease (CKD) know that over time this disease can affect their physical health, lifestyle and psychological wellbeing. Transition services and experiences differ; some young people also have better coping strategies than others. This article explores 1) whether there is a need for a transition reorganization to maintain best practice for young people with CKD and 2) what would make more effective coping and transition research for the future. Three coordinated meetings took place inviting young people to contribute their insights on transition and coping questions. 1) Twelve (12) young people from the Renal Patient Support Group (RPSG) online invited (mean age = 15 years), 2) Nine (9) young people attended a Medicines for Children Research Network (MCRN) Young Person's Advisory Group (YPAG) at the Birmingham Children's Hospital, UK (mean age = 14 years) and 3) Nine (9) from the MCRN YPAG meeting at Great Ormond Street Hospital, London UK (mean age = 15 years). Young people's contribution can be summarized: 1) The ‘rounded experiences' before, during and after transition of young people with CKD are still required, 2) It is important to see if there is an association between positive coping and smoother transition, 3) Need to appreciate care needs to be better integrated for young people ahead of their transition to achieve best practice and 4) Supporting young people with CKD to build aptitudes is important so they become independent and cope with their health. An overall transition guideline and reorganization that factors in coping strategies should be prompted in future research for teams supporting the care for young people to maintain best practice.
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Chronic 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.

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