nhs outcomes * preventing people from dying prematurely

Exploring deaths in young adults with chronic kidney disease
Lentell, L1, Shah, P2, Lambert, H1, Baines, L1
1BKPA ‘Supporting Young Adults’ Service, Newcastle upon Tyne NHS Foundation
2Newcastle University
INTRODUCTION : Young adults with end stage kidney disease are known to have
reduced survival rates compared to the general population. Preventing premature death,
domain 1 in the NHS Outcomes Framework for 2013/14, specifically includes an
indicator to measure potential years of life lost from causes amenable to health care in
young people. It also includes reducing premature mortality in people with learning
AIM: To review deaths in young adults with chronic kidney disease (CKD) and explore
possible contributing factors.
METHOD : Single centre retrospective review of case notes of young adults with CKD
aged between 18 and 30 who died between 2002-2012. Data collected included
demographics, primary diagnosis, renal diagnosis, comorbidities, psychosocial problems
and cause of death.
RESULTS: 19 young adults died between 2002 and 2012 (13 female) mean age 25 years
old. Fifteen young adults had been under the care of children’s services, five had a
complex genetic disorder. Nine young adults were treated with dialysis at the time of
death, 6 of these had a previous kidney transplant and 2 had a functioning transplant at
the time of death. Causes of death in the whole group included multi-organ failure,
cardiac disease, neurological events, malignancy, intra-abdominal sepsis, end stage
kidney failure, self harm and road traffic accident. 16 young adults had additional
significant long term conditions and 14 had hypertension. Twelve young adults were
documented to have sub-optimal concordance with treatment, 7 had mental health
problems and 7 had learning disability. Eleven young adults had more than 3 hospital
admissions in the 6 months prior to death. Concerning 10 young adults, medical and
nursing staff were ‘surprised’ that young adult had died.
CONCLUSIONS: Young adults with CKD are a complex patient group. Young adults
who died had high rates of additional long term health conditions as well as mental health
problems and learning disability all of which may contribute to adversely affect survival
over and above CKD. The challenge in this patient group is to recognise these factors
early so that appropriate interventions can be put into place designed to minimise their
impact thereby aiming to improve survival in this group.
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