PAlliative Care in chronic Kidney diSease: the PACKS study—quality of life, decision making, costs and impact on carers in people managed without dialysis

Helen Rose Noble, Ashley Agus, Kevin Brazil, Aine Burns, Nicola A. Goodfellow, Mary Guiney, Fiona McCourt, Cliona McDowell, Charles Normand, Paul Roderick, Colin Thompson, Alexander Maxwell, M. M. Yaqoob

Research output: Contribution to journalArticle

4 Citations (Scopus)
306 Downloads (Pure)

Abstract

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.

Original languageEnglish
Article number BMC nephrology IF 1.69 ISI Journal Citation Reports © Ranking: 2014 31/78 (Urology & Nephrology)
Number of pages11
JournalBMC Nephrology
Volume16
DOIs
Publication statusPublished - 11 Jul 2015
Event43rd EDTNA/ ERCA International Conference - Riga, Latvija, Latvia
Duration: 06 Sep 201409 Sep 2014

Bibliographical note

IF 1.7

Keywords

  • Palliative Care
  • Renal Insufficiency, Chronic
  • End of life
  • Research protocol
  • methods

ASJC Scopus subject areas

  • Health Professions(all)

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  • Projects

    Activities

    • 3 Invited or keynote talk at national or international conference
    • 3 Invited talk
    • 1 Contribution to the work of national or international committees and working groups

    Quality of life, costs, carers and decision making in advanced CKD – a study protocol

    Helen Noble (Invited speaker)

    05 Jul 2014

    Activity: Talk or presentation typesInvited or keynote talk at national or international conference

    Chair of UK Renal Scientist Working Party

    Amy Jayne McKnight (Chair)

    20122016

    Activity: Consultancy typesContribution to the work of national or international committees and working groups

    Palliative care for patients suffering from chronic kidney disease: what do our patients need?

    Helen Noble (Invited speaker)

    01 Oct 2010

    Activity: Talk or presentation typesInvited or keynote talk at national or international conference

    Cite this

    Noble, H. R., Agus, A., Brazil, K., Burns, A., Goodfellow, N. A., Guiney, M., McCourt, F., McDowell, C., Normand, C., Roderick, P., Thompson, C., Maxwell, A., & Yaqoob, M. M. (2015). PAlliative Care in chronic Kidney diSease: the PACKS study—quality of life, decision making, costs and impact on carers in people managed without dialysis. BMC Nephrology, 16, [ BMC nephrology IF 1.69 ISI Journal Citation Reports © Ranking: 2014 31/78 (Urology & Nephrology)]. https://doi.org/10.1186/s12882-015-0084-7