RL MORTON1, A HOFFMAN2, E JOSLAND2, C COUCHOUD3, M BROWN2,4
1Nhmrc Clinical Trials Centre, The Universty of Sydney, Camperdown, Australia, 2St George Hospital, NSW, , Kogarah, , Australia, 3National French ESRD registry REIN, French Agence de la biomedicine, Paris, France, 4University of New South Wales, Randwick, Australia
Aim: To assess symptom burden and quality of life at referral to Renal Supportive Care services.
Background: The NSW Renal Supportive Care Service is a networked statewide service that integrates palliative care into existing renal services for conservative care, dialysis, pre-dialysis and transplanted patients.
Methods: Symptom burden was measured using the Integrated-Palliative Outcome Scale–Renal (IPOS- Renal) for 15 +/-3 symptoms (on a 0-4 scale, not at all to overwhelming). Quality of life (QOL) was measured with the EuroQol (EQ-5D-5L) questionnaire (0-1 scale, death to full health) at each clinic visit. Means with standard deviations (SD) are presented by treatment pathway.
Results: Of 1255 patients from 22 renal units, between January 2016-September 2017, 353 (28%) completed the EQ-5D-5L questionnaire, mean age 78 years. 49% were on a conservative (non-dialysis) pathway, 38% dialysis, 7% pre-dialysis, 3% transplant, and 3% pathway unrecorded. Considering the maximum symptom burden values for each patient, the mean IPOS-Renal score was 19.43 (SD 9.69). The mean EQ-5D-5L QOL was 0.45 (SD 0.39); and by treatment pathway was 0.49 (SD 0.36) for conservative care (n=174); 0.41 (SD 0.42) for dialysis (n=135) [difference in means not significant p=0.0689]; 0.47 (SD 0.40) pre-dialysis (n=24); 0.30 (SD 0.47) transplant (n=10); and 0.61 (0.42) for those with a pathway unrecorded (n=10). At baseline, mobility, pain, and usual activities dimensions were responsible for the greatest decrement in QOL.
Conclusion: Patients referred to this service experience high symptom burden and poor QOL regardless of treatment pathway. Interventions that target mobility, pain and usual activities dimensions may improve overall QOL. These baseline estimates are essential for calculating the economic benefit of renal supportive care services for patients with ESKD.
Associate Professor Rachael Morton, MScMed(Clin Epi)(Hons), PhD, is Director of Health Economics at the NHMRC Clinical Trials Centre, University of Sydney. She is an academic health economist and clinical trialist with research interests in patient reported outcomes and economic evaluation of interventions in chronic kidney disease and cancer. A/Prof Morton leads the ANZDATA PROMs Working Group, and is an Executive member of the ANZSN Dialysis Advisory Committee. She has over 100 publications and currently holds an NHMRC Translating Research Into Practice (TRIP) Fellowship to embed patient reported outcomes into clinical quality registries.