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

M. M. Yaqoob⁸  A. P. Maxwell⁵  Colin Thompson⁶  Paul Roderick²  Charles Normand⁴  Cliona McDowell³  Fiona McCourt³  Mary Guiney³  Nicola A Goodfellow³  Aine Burns⁷  Kevin Brazil¹  Ashley Agus³  Helen Rose Noble¹ 

[1] School of Nursing and Midwifery, Queen’s University Belfast, Medical Biology Centre: 97 Lisburn Rd, Belfast, BT9 7BL, UK;University of Southampton, Mailpoint 805, C floor, South Academic Block, Southampton General Hospital, Southampton SO166YD, UK;Northern Ireland Clinical Trials Unit, 1st Floor Elliott Dynes Building, Royal Hospitals, Grosvenor Road, Belfast BT12 6BA, UK;Trinity College Dublin, 3–4 Foster Place, Dublin 2, Ireland;School of Medicine, Dentistry and Biomedical Sciences, Queens University Belfast & Regional Nephrology Unit, Belfast City Hospital, Belfast HSC Trust, Belfast, UK;Kidney Patient Association, Northern, Ireland, UK;Royal Free Hospital, Pond Street, London NW3 2QN, UK;William Harvey Research Institute, Queen Mary University of London, London & Renal Unit, The Royal London Hospital, London E1 1BB, UK

关键词: Quality of life renal;    Palliative care;    Mixed methods research;    End-of-life;    Conservative kidney management;    Carers;   

Others  :  1220011
DOI  :  10.1186/s12882-015-0084-7

 received in 2015-03-06, accepted in 2015-06-04,  发布年份 2015

【 摘 要 】

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.

【 授权许可】

   
2015 Noble et al.

【 图 表 】

Fig. 1.

【 参考文献 】

• [1]Quality End-of-Life Care Coalition of Canada. Blueprint for action 2010–2012. 2010. http://www.qelccc.ca/ Accessed 30.1.15
• [2]American Medical Association. AMA policy on end of life care. 2012 (11/11). http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/about-ethics-group/ethics-resource-center/end-of-life-care/ama-policy-end-of-life-care.page? Accessed 30.1.15
• [3]Department of Health, Social Services and Public Safety (DHSSPS). Living Matters: Dying Matters. A Palliative and End of Life Care Strategy for Adults in Northern Ireland, 2010. 2010; Available at: http://www.dhsspsni.gov.uk/8555_palliative_final.pdf Accessed 10.1.14
• [4]National End of Life Care Programme. Transforming end of life care in acute hospitals: The route to success ‘how to’ guide. 2012; Available at: http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/resources-search/publications/imported-publications/transforming-end-of-life-care-in-acute-hospitals.aspx Accessed 30.1.15
• [5]Small N, Barnes S, Gott M, Payne S, Parker C, Seamark D et al.. Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK. BMC Palliative Care. 2009; 8(1):6. BioMed Central Full Text
• [6]Coresh J, Selvin E, Stevens L, Manzi J, Kusek JW, Eggers P, Van Lente F, Levey AS. Prevalence of chronic kidney disease in the United States. JAMA. 2007; 298(17):2038-47.
• [7]Levey AS, Schoolwerth AC, Burrows NR, Williams DE, Stith KR, McClellan W. Comprehensive public health strategies for preventing the development, progression, and complications of CKD: report of an expert panel convened by the Centers for Disease Control and Prevention. AJKD. 2009; 53(3):522-35.
• [8]Moeller S, Gioberge S, Brown G. ESRD patients in 2001: global overview of patients, treatment modalities and development trends. NDT. 2002; 17:2071-6.
• [9]Schieppati A, Remuzzi G. Chronic renal disease as a public health problem: epidemiology, social, and economic implications. Kidney Int Suppl. 2005; 68:7-10.
• [10]Shaw C, Pitcher D, Pruthi R, Fogarty D. UK Renal Registry 16Th Annual Report: Chapter 2 UK RRT Prevalence in 2012: National and Centre-Specific Analyses. Nephron Clin Pract. 2013; 125(1–4):29-53.
• [11]Shaw, Catriona et al.. UK Renal Registry 16Th Annual Report: Chapter 2 UK RRT Prevalence In 2012: National And Centre-Specific Analyses. Nephron Clin Pract. 2013; 125(1-4):29-53.
• [12]Kerr M, Bray B, Medcalf J, O'Donoghue DJ, Matthews B. Estimating the financial cost of chronic kidney disease to the NHS in England. Nephrology Dialysis Transplantation 2012 August 05. http://ndt.oxfordjournals.org/content/early/2012/08/03/ndt.gfs269.full Accessed 30.1.15
• [13]Steencamp R, Castledine C, Feest T, Fogarty D. The Renal Association UK Renal Registry. The Thirteenth Annual Report December 2010. 2010; Available at: https://www.renalreg.org/wp-content/uploads/2014/09/Renal-Report-2011_press-bw.pdf. Accessed 12.12.12, 2012.
• [14]Ashby M, op't Hoog C, Kellehear A, Kerr PG, Brooks D, Nicholls K et al.. Renal dialysis abatement: lessons from a social study. Palliat Med. 2005; 19(0269–2163; 5):389-96.
• [15]USRDS 2002 Annual Data Report: Atlas of End‐Stage Renal Disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Disease, Bethesda, MD; 2002.
• [16]Gilg J, Rao R, Fogarty D. UK Renal Registry 16th Annual Report: Chapter 1 UK Renal Replacement Therapy Incidence in 2012: National and Centre-specific Analyses. Nephron Clin Pract. 2013; 125:1-28.
• [17]Murtagh FE, Addington-Hall JM, Higginson IJ. End-stage renal disease: a new trajectory of functional decline in the last year of life. J Am Geriatr Soc. 2011; 59(2):304-8.
• [18]Smith C, Silva-Gane M, Chandra S, Warwicker P, Greenwood R, Farrington K. Choosing not to dialyse: evaluation of planned non-dialytic management in a cohort of patients with end-stage renal failure. Nephron Clin Pract. 2003; 95(2):917-30.
• [19]Baboolal K, McEwan P, Sondhi S, Spiewanowski P, Wechowski J, Wilson K. The cost of renal dialysis in a UK setting--a multicentre study. NDT 2008 23(6):1982–9.
• [20]NHS Kidney Care and the NHS National End of Life Care Programme. End of Life Care in Advanced Kidney Disease. A Framework for Implementation. 2009. http://www.nhsiq.nhs.uk/resource-search/end-of-life-care-in-advanced-kidney-disease-a-framework-for-implementation.aspx Accessed 30.1.15
• [21]Levey A, Bosch J, Lewis J, Greene T, Rogers N, Roth D. Modification of Diet in Renal Disease Study Group: a more accurate method to estimate glomerular filtration rate from serum creatinine: a new prediction equation. Ann Int Med. 1999; 130:461-70.
• [22]Jassal SV, Watson D. Dialysis in late life: benefit or burden. Clin J Am Soc Nephrol. 2009; 4(12):2008-12.
• [23]Murtagh FEM, Sheerin NS, Addington-Hall J, Higginson IJ. Trajectories of illness in stage 5 chronic kidney disease: a longitudinal study of patient symptoms and concerns in the last year of life. Clin J American Soc Neph. 2011; 6(7):1580-90.
• [24]Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris FE. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. NDT. 2007; 22(7):1955-62.
• [25]Jassal SV, Watson D. Dialysis in late life: benefit or burden. Clinical J American Soc Neph. 2009; 12:2008-12.
• [26]Tong A, Cheung K, Nair S, Kurella Tamura M, Craig J, Winkelmayer W. Thematic Synthesis of Qualitative Studies on Patient and Caregiver Perspectives on End-of-Life Care in CKD. Am J Kidney Dis. 2014;63(6):913–27. doi:. 10. 1053/j.ajkd.2013.11.017 webcite
• [27]Visser A, Dijkstra GJ, Kuiper D, de Jong PE, Franssen CF, Gansevoort RT et al.. Accepting or declining dialysis: considerations taken into account by elderly patients with end-stage renal disease. J Nephrol. 2009; 22(6):794-9.
• [28]Noble H, Meyer J, Kelly D, Johnson B, Bridges J. Reasons renal patients give for deciding not to dialyse: prospective qualitative interview study. Dial Transplant. 2009; 38(3):82-9.
• [29]Noble H, Meyer J, Kelly D, Johnson B, Bridges J. Exploring symptoms in patients managed without dialysis. JORC. 2010; 36(1):9-15.
• [30]Johnston S, Noble H. Factors influencing patients with stage 5 chronic kidney disease to opt for conservative management: a practitioner research study. J Clin Nurs. 2012; 21(9):1215-22.
• [31]O’Connor NR, Kumar P. Conservative management of end-stage renal disease without dialysis: a systematic review. J Palliat Med. 2012; 15:228-35.
• [32]Germain M, Cohen L, Davison S. Withholding and withdrawal from dialysis: What we know about how our patients die. Semin Dial. 2007; 20(3):195-9.
• [33]Da Silva-Gane M, Wellsted D, Greenshields H, Norton S, Chandna SM, Farrington K. Quality of Life and Survival in Patients with Advanced Kidney Failure Managed Conservatively or by Dialysis. Clin J American Soc Neph. 2012;7(12):2002–9. doi: 10.2215/CJN.01130112. Epub 2012 Sep 6.
• [34]Brown MA, Masterson R. Renal palliative care in Australia: time to engage. Nephrology (Carlton). 2011; 16(1):2-3.
• [35]Werb R. Palliative care in the treatment of end-stage renal failure. Prim Care. 2011; 38(2):299-309.
• [36]Davison SN. Integrating palliative care for patients with advanced chronic kidney disease: recent advances, remaining challenges. J Palliat Care. 2011; 27(1):53-61.
• [37]Chan C, Noble H, Lo S, Kwan T, Lee S, Sze W. Palliative care for patients with end-stage renal disease: experiences from Hong Kong. Int J Palliat Nurs. 2007; 13(7):310-4.
• [38]Creswell JW, Plano Clark VL. Designing and Conducting Mixed Methods Research. 2nd ed. Sage, California; 2011.
• [39]Noble H. PAlliative Care in chronic Kidney diSease study (PACKS study). 2014; Available at: http://www.isrctn.com/ISRCTN06857980?q = noble&filters = &sort = &offset = 1&totalResults = 23&page = 1&pageSize = 10&searchType = basic-search. Accessed 30.1.15
• [40]Creswell J. Qualitative Enquiry and Research Design - Choosing among Five Traditions. Sage, London; 1998.
• [41]Chamney M, Cook T, Das R, Muhammad S, Jones J. Renal health care professionals’, patients’ and carers’ collaboration to improve education and research. Renal Soc Aust J. 2012; 8(3):120-5.
• [42]Jupp V. The SAGE Dictionary of Social Research Methods. SAGE Publications, London; 2006.
• [43]de Wet, J and Erasmus, Z (2005). Towards Rigour in Qualitative Research’. Qual Res J. 2005;52(2):27–40.
• [44]Oakes J. Risks and wrongs in social science research: an evaluator’s guide to the IRB. Eval Rev. 2002; 26(443):479.
• [45]Mount B, Cohen R, MacDonald N, Bruera E. Ethical issues in palliative care research revisited. Palliat Med. 1995; 9(2):165-70.
• [46]Murray SA, Sheikh A, Thomas K. Advance care planning in primary care. BMJ. 2006; 333(7574):868-9.
• [47]Davison S, Murtagh F, Higginson I. Methodological considerations for end-of-life research in patients with chronic kidney disease. J Nephrol. 2008; 21:268-82.
• [48]Barnes S, Gott M, Parker C, Payne S, Seamark D, Small N et al.. Recruiting older people into a large, community-based study of heart failure. Chronic Illness. 2005; 1(4):321-9.
• [49]Hays R, Kallich J, Mapes D, Coons S, Carter W. Development of the kidney disease quality of life (KDQOL) instrument. Qual of Life Res. 1994; 3(5):329-38.
• [50]Herdman M, Gudex C, Lloyd A, Janssen M, Kind P, Parkin D, Bonsel G, Badia X. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual of Life Res. 2011; 20(10):1727-36.
• [51]Wasserfallen J, Halabi G, Saudan P, Perneger T, Feldman HI, Martin PY et al.. Quality of life on chronic dialysis: comparison between haemodialysis and peritoneal dialysis. NDT. 2004; 19:1594-9.
• [52]Murtagh F, Weisbord S. Symptoms in renal disease; their epidemiology, assessment, and management. In: Supportive Care for the Renal Patient. 2nd ed. Brown E, Germain M, editors. Oxford University Press, Oxford; 2010: p.103-32.
• [53]Brooke P, Bullock R. Validation of a 6 item cognitive impairment test with a view to primary care usage. Int J Geriatr Psychiatry. 1999; 14(11):936-40.
• [54]Rockwood K, Song X, MacKnight C, Bergman H, Hogan DB, McDowell I et al.. A global clinical measure of fitness and frailty in elderly people. CMAJ. 2005; 173:489-95.
• [55]Anderson F, Downing G, Hill J. Palliative Performance Scale (PPS): a new tool. J Palliat Care. 1996; 12(1):5-11.
• [56]O'Connor A. Decisional Conflict Scale - User Manual. 2010; Available at: http://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Decisional_Conflict.pdf. Accessed 30.1.15
• [57]Wordsworth S, Thompson S. An annotated cost questionnaire for patients: results of piloting, HERU Discussion Paper, 2001, Discussion Paper 03/01. 2001. http://www.dirum.org/assets/downloads/634432307461163116-An%20annotated%20cost%20questionnaire%20for%20completion%20by%20patients.pdf Accessed 30.1.15