Patient-Reported Outcome Instruments for Physical Symptoms Among Patients Receiving Maintenance Dialysis: A Systematic Review

Abstract

Background Patients with end-stage renal disease (ESRD) receiving dialysis have poor health-related quality of life (HRQoL). Physical symptoms are highly prevalent among dialysis-dependent patients and play important roles in HRQoL. A range of symptom assessment tools have been used in dialysis-dependent patients, but there has been no previous systematic assessment of the existing symptom measures’ content, validity, and reliability. Study Design systematic review of the literature Settings & Population ESRD patients on maintenance dialysis Selection Criteria for Studies instruments with ≥3 physical symptoms previously used in dialysis-dependent patients and evidence of validity or reliability testing Intervention patient-reported physical symptom assessment instrument Outcomes instrument symptom-related content, validity, and reliability Results From 3,148 screened abstracts, 89 full-text articles were eligible for review. After article exclusion and further article identification via reference reviews, 58 articles on 23 symptom assessment instruments with documented reliability or validity testing were identified. Of the assessment instruments, 43.5% were generic and 56.5% were ESRD-specific. Symptoms most frequently assessed were fatigue, shortness of breath, insomnia, nausea and vomiting, and appetite. The instruments varied widely in respondent time burden, recall period, and symptom attributes. Few instruments considered recall periods less than 2 weeks and few assessed a range of symptom attributes. Psychometric testing was completed for congruent validity (70%), known group validity (25%), responsiveness (30%), internal consistency (78%), and test-retest reliability (65%). Content validity was assessed in dialysis populations in 57% of the 23 instruments. Limitations Consideration of physical symptoms only and exclusion of single symptom-focused instruments Conclusions The number of available instruments focused exclusively on physical symptoms in dialysis patients is limited. Few symptom-containing instruments have short recall periods, assess diverse symptom attributes, and have undergone comprehensive psychometric testing. Improved symptom-focused assessment tools are needed to improve symptom evaluation and symptom responsiveness to intervention among dialysis-dependent patients.

Development and content validity of a hemodialysis symptom patient-reported outcome measure

“…[15] The review yielded 23 PROMs containing 3 or more physical symptoms. Thirteen of the 23 PROMs were developed in patients receiving dialysis.…”

“…We followed a 4-step process in developing the hemodialysis symptom PROM: (1) literature review (previously reported[15]); (2) concept elicitation interviews; (3) item selection and draft measure construction; and (4) 3 rounds of cognitive debriefing interviews with intervening measure updates (Figure 1). Advisors, including nephrologists, psychometricians, and patients, provided input during the measure development process.…”

Symptoms and their recognition in adult haemodialysis patients: Interactions with quality of life

“…The Palliative Outcome Score‐Renal (POS‐Renal) questionnaire, validated for use in patients with advanced kidney disease and recommended by recent guidelines, was used to survey symptoms . The POS‐Renal lists the same 17 symptoms (e.g.…”

The Edmonton Symptom Assessment System 25 Years Later: Past, Present, and Future Developments

“…(17) Within other branches of oncology, ESAS has been used by medical oncologists,(59, 60) radiation oncologists,(61) surgical oncologists,(62, 63) and gynecological oncologists. (64, 65) Outside of oncology, ESAS has also been adopted for symptom assessment in patients with kidney diseases,(66, 67) heart failure,(68, 69) pulmonary disorders,(70) hepatic diseases,(71) and sickle cell anemia. (72)…”