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Project Title

PAlliative Care in chronic Kidney diSease  (PACKS) study

Research Focus:

Chronic Illness and Palliative care

Funder & Dates

NIHR Post Doctoral Fellowship

12/13 – 05/17

Principal Investigator or Primary Supervisor (if PhD project)

Dr Helen Noble

Co-Investigators or additional supervisors


Research Fellow(s) or PhD Student


Name & Institution of Collaborators

K. Brazil1, A. Burns2, C. McDowell3, C. Normand4, C. Thompson5, P. Roderick6, P. Maxwell7, M. Yaqoob8

1School of Nursing and Midwifery, Queen's University Belfast, Belfast, United Kingdom

2Nephrology, Royal Free Foundation Trust, London, United Kingdom

3Northern Ireland Clinical Trials Unit, The Royal Hospitals, Belfast, United Kingdom

4Centre for Health Policy and Management, Trinity College Dublin, Dublin, Ireland

5Northern Ireland Kidney Patient Association, Belfast Health and Social Care Trust, Belfast, United Kingdom

6Public Health, University of Southampton, Southampton, United Kingdom

7School of Medicine, Dentistry and Biomedical Sciences and the Regional Nephrology Unit, Belfast City Hospital, Queen’s University Belfast and Belfast Health and Social Care Trust, Belfast, United Kingdom

8Renal Department, The Royal London Hospital, London, United Kingdom



Name of External Partner Organisations

NI Kidney Patient Association

Description of Project:

Aim; Methods; Expected Outcomes


This was a UK multicenter, prospective, observational study carried out between January 2016 to May 2017 which included patients with an eGFR ≤ 20 mL/minute who had opted for conservative management. The primary outcome was quality of life (QoL) at 3 months measured using the EQ-5D-5L visual analogue scale. Secondary outcomes included: QoL over 12 months, symptoms, cognition, frailty status, performance, satisfaction in decision making in patients, costs of services and carer assessment of patient QoL and decisional conflict by proxy. Descriptive cost and health related quality of life analyses were also completed.


Forty-two patients (Female=59%) and 19 carers were recruited. 85.7% of participants had a cardiovascular history. Average eGFR was 12.47 ± 3.22 at baseline and remained stable over 12 months. The mean EQ-5D-5L Visual Analogue Scale at baseline was 63.55 ± 15.86 (n=42) with no substantial change in mean VAS score at 12 months (-2.00 ± 21.70 n= 10). At baseline 83.3% (n=35) reported problems with mobility and 73.8% (n=31) with usual activities. Participants all scored higher measures of QoL compared to when administered by proxy. Scores of the Palliative Performance Scale reduced over time. In relation to frailty, participants scored as ‘vulnerable’ to ‘mildly frail’ at baseline (4.19 ± 1.47) (n=42), with average change from baseline at 12 months being 0.50 ± 0.85, indicating a small increase in frailty over time. Decisional conflict was low (18.38 ± 10.98 n =42). Carers reported higher decisional conflict compared to patients.


Mean costs were; £1622 (0-3 months), £1008 (3-6 months), £554 (6-9 months) and £2626 (9-12 months). Mean annual cost based on complete data (n=8) was £5511, and the weighted mean annual cost was £5620.


In the PACKS study, frail patients with reduced performance maintained QoL over 12 months. Conservative management should be offered as a treatment option, particularly for elderly patients with high rates of co-morbidity. The study also provides substantive new information for health and social care planning of conservative management by demonstrating where demand exists for services, in both the UK and other countries with a comparable health service structure. Methodologically it indicates that it is feasible to collect service use data directly from this patient population.



Photograph of PI, Project Team, Partner Logos; any other images associated with the project.


Photo:  The PACKS study led by Dr Helen Noble has been supported by the Northern Ireland Kidney Patient’s Association


Links/URLs to external pages, e.g., study webpage, reports, publications etc.



Any other relevant information

"Healthcare use, and costs and health-related quality of life in patients with end-stage kidney disease receiving conservative management: results from a multi-centre observational study." – accepted for publication, Palliative Medicine, 16.4.18