PRO: Patient-Reported Outcome Scale for Chronic Kidney Disease
Abstract:
Background: Patients with end-stage renal disease (ESRD) suffer from a wide range of burdensome symptoms that persist despite adequate dialysis as measured by standard solute clearance parameters. Patient-reported outcome measures (PROMs) offer a structured approach to systematically identify and address this symptom burden.
Methods: A cross-sectional descriptive study was conducted in the nephrology department of CHU Ibn Rochd, Casablanca. Thirty-three patients on regular hemodialysis for at least one year were included. Demographic, clinical, and biochemical data were collected, and comorbidity burden was assessed using the Charlson Comorbidity Index. Symptom burden was evaluated using the IPOS-Renal questionnaire, which covers 15 physical symptoms and emotional items scored on a 5-point scale (0–4) over the preceding 7 days. Statistical analyses were performed using SPSS, with significance set at p < 0.05.
Results: The mean age was 55.4 ± 11.5 years; 40% were female. The most prevalent moderate-to-severe symptoms (≥ 2) were fatigue/lack of energy (~70%), sleep disturbances (~64%), pruritus (~61%), somnolence (~52%), restless legs (~49%), decreased appetite (~45%), and pain (~39%). Anxiety/worry was reported at a moderate-to-severe level in ~55% of patients. Total IPOS score correlated positively with the Charlson Comorbidity Index (ρ ≈ +0.42, p ≈ 0.015) and negatively with serum albumin (ρ ≈ –0.36, p ≈ 0.041).
Conclusion: The symptom burden in hemodialysis patients remains high despite dialysis adequacy. Fatigue, sleep disorders, and pruritus are the most frequent and distressing complaints. Symptom load is associated with comorbidity and nutritional status, highlighting the need for an integrated management approach combining symptom control, nutritional support, and comorbidity management.
KeyWords:
patient-reported outcomes; chronic kidney disease; hemodialysis; IPOS-Renal; symptom burden; quality of life; pruritus; fatigue; Charlson Comorbidity Index
References:
- Raj R, Ahuja K, 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):281-287. doi:10.1016/j.jpainsymman.2018.04.006
- Murtagh FEM, Ramsenthaler C, Firth A, et al. A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Palliat Med. 2019;33(8):1045-1057. doi:10.1177/0269216319854264
- Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis. 1987;40(5):373-383. doi:10.1016/0021-9681(87)90171-8
- Fletcher BR, Damery S, Aiyegbusi OL, et al. Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis. PLoS Med. 2022;19(4):e1003954. doi:10.1371/journal.pmed.1003954
- Mettang T, Kremer AE. Uremic pruritus. Kidney Int. 2015;87(4):685-691. doi:10.1038/ki.2013.454
- Rayner HC, Larkina M, Wang M, et al. International comparisons of prevalence, awareness, and treatment of pruritus in people on hemodialysis. Clin J Am Soc Nephrol. 2017;12(12):2000-2007. doi:10.2215/CJN.03280317
- Weisbord SD, Fried LF, Mor MK, et al. Renal provider recognition of symptoms in patients on maintenance hemodialysis. Clin J Am Soc Nephrol. 2007;2(5):960-967. doi:10.2215/CJN.00580107
- van Oevelen M, Bone AA, et al. Health-related quality of life and symptom burden in patients on haemodialysis. Nephrol Dial Transplant. 2024;39(3):436-445. doi:10.1093/ndt/gfad218