title: PAlliative Care in chronic Kidney diSease: the PACKS study--quality of life, decision making, costs and impact on carers in people managed without dialysis.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: School of Nursing and Midwifery, Queen's University Belfast, Medical Biology Centre: 97 Lisburn Rd, BT9 7BL, Belfast, UK. helen.noble@qub.ac.uk.
authors.forename: Helen Rose
authors.initials: HR
authors.lastname: Noble
authors.affiliation: Northern Ireland Clinical Trials Unit, 1st Floor Elliott Dynes Building, Royal Hospitals, Grosvenor Road, Belfast, BT12 6BA, UK. Ashley.Agus@nictu.hscni.net.
authors.forename: Ashley
authors.initials: A
authors.lastname: Agus
authors.affiliation: School of Nursing and Midwifery, Queen's University Belfast, Medical Biology Centre: 97 Lisburn Rd, BT9 7BL, Belfast, UK.
authors.forename: Kevin
authors.initials: K
authors.lastname: Brazil
authors.affiliation: Royal Free Hospital, Pond Street, London, NW3 2QN, UK. aine.burns@nhs.net.
authors.forename: Aine
authors.initials: A
authors.lastname: Burns
authors.affiliation: Northern Ireland Clinical Trials Unit, 1st Floor Elliott Dynes Building, Royal Hospitals, Grosvenor Road, Belfast, BT12 6BA, UK. nicola.goodfellow@nictu.hscni.net.
authors.forename: Nicola A
authors.initials: NA
authors.lastname: Goodfellow
authors.affiliation: Northern Ireland Clinical Trials Unit, 1st Floor Elliott Dynes Building, Royal Hospitals, Grosvenor Road, Belfast, BT12 6BA, UK. Mary.Guiney@belfasttrust.hscni.net.
authors.forename: Mary
authors.initials: M
authors.lastname: Guiney
authors.affiliation: Northern Ireland Clinical Trials Unit, 1st Floor Elliott Dynes Building, Royal Hospitals, Grosvenor Road, Belfast, BT12 6BA, UK. Fiona.McCourt@nictu.hscni.net.
authors.forename: Fiona
authors.initials: F
authors.lastname: McCourt
authors.affiliation: Northern Ireland Clinical Trials Unit, 1st Floor Elliott Dynes Building, Royal Hospitals, Grosvenor Road, Belfast, BT12 6BA, UK. clionauuj@hotmail.com.
authors.forename: Cliona
authors.initials: C
authors.lastname: McDowell
authors.affiliation: Trinity College Dublin, 3-4 Foster Place, Dublin 2, Ireland. normandc@tcd.ie.
authors.forename: Charles
authors.initials: C
authors.lastname: Normand
authors.affiliation: University of Southampton, Mailpoint 805, C floor, South Academic Block, Southampton General Hospital, Southampton, SO166YD, UK. pjr@soton.ac.uk.
authors.forename: Paul
authors.initials: P
authors.lastname: Roderick
authors.affiliation: Kidney Patient Association, Northern, Ireland, UK.
authors.forename: Colin
authors.initials: C
authors.lastname: Thompson
authors.affiliation: School of Medicine, Dentistry and Biomedical Sciences, Queens University Belfast & Regional Nephrology Unit, Belfast City Hospital, Belfast HSC Trust, Belfast, UK. A.P.Maxwell@qub.ac.uk.
authors.forename: A P
authors.initials: AP
authors.lastname: Maxwell
authors.affiliation: William Harvey Research Institute, Queen Mary University of London, London & Renal Unit, The Royal London Hospital, London, E1 1BB, UK. m.m.yaqoob@qmul.ac.uk.
authors.forename: M M
authors.initials: MM
authors.lastname: Yaqoob
mesh_terms: D017028:Caregivers / Q000523:psychology*; D003072:Cognition Disorders / Q000523:psychology; D017281:Cost of Illness; D003657:Decision Making; D017048:Health Care Costs; D006801:Humans; D007676:Kidney Failure, Chronic / Q000191:economics / Q000451:nursing / Q000523:psychology* / Q000628:therapy; D008137:Longitudinal Studies; D010166:Palliative Care; D011446:Prospective Studies; D036301:Qualitative Research; D011788:Quality of Life; D051436:Renal Insufficiency, Chronic / Q000191:economics / Q000451:nursing / Q000523:psychology / Q000628:therapy; D006113:United Kingdom