Palliative care needs and health-related quality of life among patients with end-stage kidney disease on haemodialysis in a tertiary care hospital in Mumbai: a cross-sectional study

Neha Nitin Shet; Mridula Solanki; Sujata Lavangare

doi:10.18203/2394-6040.ijcmph20261868

Authors

Neha Nitin Shet Department of Community Medicine, Topiwala National Medical College and BYL Nair Charitable Hospital, Mumbai, Maharashtra, India
Mridula Solanki Department of Community Medicine, Seth GS Medical College and KEM Hospital, Parel, Mumbai, Maharashtra, India
Sujata Lavangare Department of Community Medicine, Seth GS Medical College and KEM Hospital, Parel, Mumbai, Maharashtra, India

DOI:

https://doi.org/10.18203/2394-6040.ijcmph20261868

Keywords:

End-stage renal disease, Maintenance hemodialysis, Palliative care needs, Health-related quality of life, Symptom burden, EQ-5D-5L

Abstract

Background: End-stage renal disease (ESRD) is associated with substantial symptom burden, impaired health-related quality of life (HRQoL), and unmet palliative care needs. Despite the growing recognition of supportive care in nephrology, evidence from India remains limited. This study assessed HRQoL and palliative care needs among patients undergoing maintenance hemodialysis (MHD) and explored their relationship with symptom burden.

Methods: A hospital-based cross-sectional study was conducted between June 2022 and January 2023 among 236 adults receiving MHD at tertiary care teaching hospitals in Mumbai, India. Palliative care needs were assessed using the palliative outcome scale-symptoms renal (POS-S Renal), while HRQoL was measured using the EuroQol five-dimensional five-level questionnaire (EQ-5D-5L) with the Indian value set. Sociodemographic and clinical data were collected through structured interviews and medical record review. The relationship between palliative care needs, symptom burden, and HRQoL was examined using correlation.

Results: Participants had a median age of 64.5 years, and 63.6% were male. The median POS score was 16.0 (IQR: 12.0-23.0), indicating considerable unmet palliative care needs. Family anxiety, information needs, practical support, and symptom-related concerns were among the most prominent issues. The mean number of symptoms reported was 15.04±5.06, with dry mouth (91.5%), itching (83.1%), dry skin (82.2%), and fatigue being the most common symptoms. The median EQ-5D-5L utility score was 0.78, with older patients reporting poorer HRQoL. Higher POS scores were significantly associated with greater symptom burden and lower HRQoL.

Conclusions: Patients receiving MHD experience substantial symptom burden, unmet palliative care needs, and reduced HRQoL. Early integration of multidisciplinary palliative care into routine nephrology services may improve symptom management, address supportive care needs, and enhance patient-centred outcomes.

References

GBD Chronic Kidney Disease Collaboration. Global, regional, and national burden of chronic kidney disease, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet. 2020;395(10225):709-33.

Intradialytic Hypotension Prevention and Treatment Expert Working Group, Renal and Blood Purification Committee, Chinese Medicine Education Society. Expert consensus on the prevention and treatment of intradialytic hypotension (2022). Chin J Intern Med. 2022;61:269-81.

Song YH, Cai GY, Xiao YF, Chen XM. Risk factors for mortality in elderly haemodialysis patients: a systematic review and meta-analysis. BMC Nephrol. 2020;21(1):377.

Wachterman MW, O'Hare AM, Rahman OK, Lorenz KA, Marcantonio ER, Alicante GK, et al. One-year mortality after dialysis initiation among older adults. JAMA Intern Med. 2019;179(7):987-90.

Wong SPY, Kreuter W, O'Hare AM. Treatment intensity at the end of life in older adults receiving long-term dialysis. Arch Intern Med. 2012;172(8):661-3.

Song YY, Chen L, Yu WW, Wang WX, Yang DJ, Jiang XL. Correlates of symptom burden of hemodialysis patients. West J Nurs Res. 2021;43(5):459-67.

You AS, Kalantar SS, Norris KC, Peralta RA, Narasaki Y, Fischman R, et al. Dialysis symptom index burden and symptom clusters in a prospective cohort of dialysis patients. J Nephrol. 2022;35(5):1427-36.

McKeaveney C, Witham M, Alamrani AO, Maxwell AP, Mullan R, Noble H, et al. Quality of life in advanced renal disease managed either by haemodialysis or conservative care in older patients. BMJ Support Palliat Care. 2020;13(1):87-94.

Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, et al. Redefining palliative care: a new consensus-based definition. J Pain Symptom Manage. 2020;60(4):754-64.

Davison SN, Levin A, Moss AH, Jha V, Brown EA, Brennan F, et al. Executive summary of the KDIGO controversies conference on supportive care in chronic kidney disease: developing a roadmap to improving quality care. Kidney Int. 2015;88(3):447-59.

Chiu HHL, Murphy-Burke DM, Thomas SA, Melnyk Y, Kruthaup-Harper AL, Dong J, et al. Advancing palliative care in patients with CKD: from ideas to practice. Am J Kidney Dis. 2021;77(3):420-6.

Siriwardana AN, Hoffman AT, Brennan FP, Li K, Brown MA. Impact of renal supportive care on symptom burden in dialysis patients: a prospective observational cohort study. J Pain Symptom Manage. 2020;60(4):725-36.

Chettiar M, Montez-Rath M, Liu S, Hall YN, O'Hare AM, Kurella Tamura M. Association of inpatient palliative care with health care utilization and postdischarge outcomes among Medicare beneficiaries with end-stage kidney disease. Clin J Am Soc Nephrol. 2018;13(8):1180-7.

Richards CA, Liu CF, Hebert PL, Ersek M, Wachterman MW, Reinke LF, et al. Family perceptions of quality of end-of-life care for veterans with advanced CKD. Clin J Am Soc Nephrol. 2019;14(9):1324-35.

Gelfand SL, Scherer JS, Koncicki HM. Kidney supportive care: core curriculum 2020. Am J Kidney Dis. 2020;75(5):793-806.

Chung H, Harding R, Guo P. Palliative care in the greater China region: a systematic review of needs, models, and outcomes. J Pain Symptom Manage. 2021;61(3):585-612.

Afolabi OA, Nkhoma K, Maddocks M, Harding R. What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence. Palliat Med. 2021;35(6):1052-70.

Bostwick D, Wolf S, Samsa G, Bull J, Taylor DH Jr, Johnson KS, et al. Comparing the palliative care needs of those with cancer to those with common non-cancer serious illness. J Pain Symptom Manage. 2017;53(6):1079-84.e1.

Palliative Care Outcome Scale (POS). The Palliative Care Outcome Scale outline for new and current users. Available at: https://pos-pal.org/maix/pos-and-ipos-summary.php. Accessed on 28 February 2026.

Bausewein C, Booth S, Gysels M, Kühnbach R, Haberland B, Higginson IJ. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med. 2010;13(9):1109-18.

Marcucci FCI, Cabrera MAS, Perilla AB, Brun MM, de Barros EML, Martins VM, et al. Identification and characteristics of patients with palliative care needs in Brazilian primary care. BMC Palliat Care. 2016;15:51.

Palliative Care Outcome Scale (POS). How to score POS version 1 and version 2. Available at: https://pos-pal.org/maix/how-to-score.php. Accessed on 28 February 2026.

Min Y. The quality of palliative care to advanced cancer patient and associated factors: a cross-sectional study in Shanghai master's thesis]. Shanghai: The Second Military Medical University; 2013.

Palliative Care Outcome Scale (POS). POS downloads. Available at: https://pos-pal.org/maix/pos-downloads.php. Accessed on 02 February 2026.

Weisbord SD, Fried LF, Arnold RM, Rotondi AJ, Fine MJ, Levenson DJ, et al. Development of a symptom assessment instrument for chronic hemodialysis patients: the Dialysis Symptom Index. J Pain Symptom Manage. 2004;27(3):226-40.

Fleishman TT, Dreiher J, Shvartzman P. Patient-reported outcomes in maintenance hemodialysis: a cross-sectional, multicenter study. Qual Life Res. 2020;29(9):2345-54.

Weisbord SD, Fried LF, Unruh ML, Kimmel PL, Switzer GE, Fine MJ, et al. Associations of race with depression and symptoms in patients on maintenance haemodialysis. Nephrol Dial Transplant. 2007;22(1):203-8.

Ng MSN, So WKW, Wong CL, Hui YH, Ho EHS, Choi KC, et al. Stability and impact of symptom clusters in patients with end-stage renal disease undergoing dialysis. J Pain Symptom Manage. 2020;59(1):67-76.

Tsuruya K, Arima H, Iseki K, Hirakata H; Kyushu Dialysis-Related Amyloidosis Study Group. Association of dialysis-related amyloidosis with lower quality of life in patients undergoing hemodialysis for more than 10 years: the Kyushu Dialysis-Related Amyloidosis Study. PLoS One. 2021;16(8):e0256421.

Brooks R. EuroQol: the current state of play. Health Policy. 1996;37(1):53-72.

Liu GG, Wu HY, Li MH, Gao C, Luo N. Chinese time trade-off values for EQ-5D health states. Value Health. 2014;17(5):597-604.

Kwok JYY, Huang TW, Tretriluxana J, Auyeung M, Chau PH, Lin CC, et al. Symptom burden and unmet support needs of patients with Parkinson's disease: a cross-sectional study in Asia-Pacific regions. J Am Med Dir Assoc. 2021;22(6):1255-64.

Haun MW, Estel S, Rücker G, Friederich HC, Villalobos M, Thomas M, et al. Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev. 2017;6(6):CD011129.

Brännström M, Boman K. Effects of person-centred and integrated chronic heart failure and palliative home care (PREFER): a randomized controlled study. Eur J Heart Fail. 2014;16(10):1142-51.

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 Am Soc Nephrol. 2011;6(7):1580-90.

Higginson IJ, Gao W. Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity. Health Qual Life Outcomes. 2008;6:42.

Movilli E, Gaggia P, Zubani R, Camerini C, Vizzardi V, Parrinello G, et al. Association between high ultrafiltration rates and mortality in uraemic patients on regular haemodialysis: a 5-year prospective observational multicentre study. Nephrol Dial Transplant. 2007;22(12):3547-52.

Noordzij M, Boeschoten EW, Bos WJ, Dekker FW, Bossuyt PM, Krediet RT, et al. Disturbed mineral metabolism is associated with muscle and skin complaints in a prospective cohort of dialysis patients. Nephrol Dial Transplant. 2007;22(10):2944-9.

Bossola M, Marzetti E, Di Stasio E, Monteburini T, Cenerelli S, Mazzoli K, et al. Prevalence and associated variables of post-dialysis fatigue: results of a prospective multicentre study. Nephrology (Carlton). 2018;23(6):552-8.

Picariello F, Moss-Morris R, Norton S, MacDougall IC, da Silva-Gane M, Farrington K, et al. Feasibility trial of cognitive behavioral therapy for fatigue in hemodialysis (BReF intervention). J Pain Symptom Manage. 2021;61(6):1234-46.

Lai FC, Chen IH, Chen PJ, Chen IJ, Chien HW, Yuan CF. Acupressure, sleep, and quality of life in institutionalized older adults: a randomized controlled trial. J Am Geriatr Soc. 2017;65(5):e103-8.

Hargrove N, El Tobgy N, Zhou O, Pinder M, Plant B, Askin N, et al. Effect of aerobic exercise on dialysis-related symptoms in individuals undergoing maintenance hemodialysis: a systematic review and meta-analysis of clinical trials. Clin J Am Soc Nephrol. 2021;16(4):560-74.

Gilbertson EL, Krishnasamy R, Foote C, Kennard AL, Jardine MJ, Gray NA. Burden of care and quality of life among caregivers for adults receiving maintenance dialysis: a systematic review. Am J Kidney Dis. 2019;73(3):332-43.

Shah KK, Murtagh FEM, McGeechan K, Crail SM, Burns A, Morton RL. Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care. BMC Nephrol. 2020;21(1):160.

Lam DY, Scherer JS, Brown M, Grubbs V, Schell JO. A conceptual framework of palliative care across the continuum of advanced kidney disease. Clin J Am Soc Nephrol. 2019;14(4):635-41.

Chan KY, Yip T, Yap DYH, Sham MK, Wong YC, Lau VWK, et al. Enhanced psychosocial support for caregiver burden for patients with chronic kidney failure choosing not to be treated by dialysis or transplantation: a pilot randomized controlled trial. Am J Kidney Dis. 2016;67(4):585-92.

Ladin K, Buttafarro K, Hahn E, Koch-Weser S, Weiner DE. End-of-life care? I'm not going to worry about that yet: health literacy gaps and end-of-life planning among elderly dialysis patients. Gerontologist. 2018;58(2):290-9.

Raj R, Thiruvengadam S, Ahuja KDK, Frandsen M, Jose M. Discussions during shared decision-making in older adults with advanced renal disease: a scoping review. BMJ Open. 2019;9(11):e031427.

Liu J, Hutton DW, Gu YH, Hu Y, Li Y, Ma L, et al. Financial implications of dialysis modalities in the developing world: a Chinese perspective. Perit Dial Int. 2020;40(2):193-201.

Raj R, Brown B, Ahuja KDK, Frandsen M, Jose M. Enabling good outcomes in older adults on dialysis: a qualitative study. BMC Nephrol. 2020;21(1):28.

Bausewein C, Le Grice C, Simon S, Higginson IJ; PRISMA. The use of two common palliative outcome measures in clinical care and research: a systematic review of POS and STAS. Palliat Med. 2011;25(4):304-13.

Raj R, Ahuja KDK, Frandsen M, Murtagh FEM, Jose M. Validation of the IPOS-Renal Symptom Survey in advanced kidney disease: a cross-sectional study. J Pain Symptom Manage. 2018;56(2):281-7.