Symptom burden and quality of life in end-stage renal disease: a study of 179 patients on dialysis and palliative care

Abstract

Palliative care for end-stage renal disease (ESRD) is developing in Hong Kong. This is the first local study to explore the symptom burden and quality of life (QOL) of ESRD patients on chronic dialysis and palliative care. This was a prospective cross-sectional study conducted on ESRD patients in a hospital in Hong Kong from January 2006 to April 2007. Data collected included demographics, socioeconomic status, modified Charlson Comorbidity Index (CCI), prevalence and intensity of 23 ESRD-related symptoms as rated by numerical rating scale (0-10), Brief Pain Inventory and QOL by MOS SF-36. A total of 179 ESRD patients completed the study; 45 patients (25.1%) were in the palliative care group and 134 patients (74.9%) in the dialysis group. The palliative care group were older (73.1 +/- 7.1 vs 58.2 +/- 11.4 years, P < 0.001), had marginally higher modified CCI (8.5 +/- 1.9 vs 6.1 +/- 2.4, P = 0.05), had more diabetics (62.2 vs 35.8%, P < 0.001) and were of poorer socioeconomic status than the dialysis group. The mean number of symptoms was 8.2 +/- 3.9 and 9.3 +/- 4.7 in the palliative care and the dialysis group, respectively (P = NS). Fatigue, cold aversion, pruritus, lower torso weakness and difficulty sleeping were the five most prevalent symptoms in both groups, and were also among the most intense symptoms. QOL was significantly impaired in both groups. Scores of all QOL domains correlated negatively with the number of symptoms (P < 0.001). Our ESRD patients under palliative care and dialysis had overlapping symptom prevalence and intensity, significant symptom burden and impaired QOL.

Patients Who Plan for Conservative Care Rather Than Dialysis: A National Observational Study in Australia

“…17 Historically women in the United States and Sweden had only 70-90% chance of receiving renal replacement therapy compared to men; 18 and more recently in Hong Kong a male to female renal conservative care ratio of 1 to1.14 was reported. 5 This association was not observed in two observational studies of conservative patients in the United Kingdom, 19,20 however the finding is consistent with evidence from other chronic diseases suggesting that men may be more likely than women to be treated with active intervention than medical management, (for example carotid endarterectomy for stroke prevention). 21 Patients with private health insurance (including war veterans insurance) were also less likely to commence conservative care.…”

“…We know there were no plans for these patients to commence dialysis in the foreseeable future and other longitudinal studies have shown the majority of patients do not cross over from conservative care to the renal replacement therapy at the last minute, if well prepared and fully informed about their treatment options. 5,7,33 Our study was also limited to incident stage 5 CKD patients managed conservatively by nephrologists (i.e. not in the community).…”

“…2,4 Data from single-center studies suggest that those who choose to forgo dialysis are generally older, of lower socioeconomic status, and more likely to have diabetes mellitus, than patients treated with dialysis. [5][6][7] Clinical practice guidelines in the United States, United Kingdom and Australia recommend all patients approaching end-stage kidney disease (ESKD) be informed about their treatment options including the option of conservative care. [8][9][10][11] The rationale is that patients' treatment decisions should be based on an accurate understanding of their condition and the harms and benefits of each treatment pathway.…”

Dialysis in the Frail Elderly — A Current Ethical Problem, an Impending Ethical Crisis

“…45 High comorbidity scores adversely impact survival. 46 Symptom burden is high for patients with advanced, chronic kidney disease 47 as well as those on HD 14 and supportive care, 48 with limited ability to compare quality of life between groups. 45,48 Many patients' views of their own welfare seem to surround being able to maintain their lifestyle and social interactions more than life extension.…”

“…46 Symptom burden is high for patients with advanced, chronic kidney disease 47 as well as those on HD 14 and supportive care, 48 with limited ability to compare quality of life between groups. 45,48 Many patients' views of their own welfare seem to surround being able to maintain their lifestyle and social interactions more than life extension. 21,49 Patients vary greatly in their personal approach to life, suffering, and death 21 and can have multiple goals of care that influence what beneficence toward them might mean.…”