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2015 ; 16
(ä): 104
Nephropedia Template TP
gab.com Text
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English Wikipedia
PAlliative Care in chronic Kidney diSease: the PACKS study--quality of life,
decision making, costs and impact on carers in people managed without dialysis
#MMPMID26163382
Noble HR
; Agus A
; Brazil K
; Burns A
; Goodfellow NA
; Guiney M
; McCourt F
; McDowell C
; Normand C
; Roderick P
; Thompson C
; Maxwell AP
; Yaqoob MM
BMC Nephrol
2015[Jul]; 16
(ä): 104
PMID26163382
show ga
BACKGROUND: The number of patients with advanced chronic kidney disease opting
for conservative management rather than dialysis is unknown but likely to be
growing as increasingly frail patients with advanced renal disease present to
renal services. Conservative kidney management includes ongoing medical input and
support from a multidisciplinary team. There is limited evidence concerning
patient and carer experience of this choice. This study will explore quality of
life, symptoms, cognition, frailty, performance decision making, costs and impact
on carers in people with advanced chronic kidney disease managed without dialysis
and is funded by the National Institute of Health Research in the UK. METHODS: In
this prospective, multicentre, longitudinal study, patients will be recruited in
the UK, by renal research nurses, once they have made the decision not to embark
on dialysis. Carers will be asked to 'opt-in' with consent from patients. The
approach includes longitudinal quantitative surveys of quality of life, symptoms,
decision making and costs for patients and quality of life and costs for carers,
with questionnaires administered quarterly over 12 months. Additionally, the
decision making process will be explored via qualitative interviews with renal
physicians/clinical nurse specialists. DISCUSSION: The study is designed to
capture patient and carer profiles when conservative kidney management is
implemented, and understand trajectories of care-receiving and care-giving with
the aim of optimising palliative care for this population. It will explore the
interactions that lead to clinical care decisions and the impact of these
decisions on informal carers with the intention of improving clinical outcomes
for patients and the experiences of care givers.