As part of a renewed focus on the individual in the delivery of medical care, there is an increased interest in including patient-reported outcomes and symptoms as a routine component of the management of patients with chronic conditions.
It is well-known that chronic pain is commonly experienced by patients with end-stage renal disease who receive dialysis.1 There are likely many factors that contribute to pain in this patient population, including the high prevalence of comorbid conditions such as diabetes and its complications (eg, polyneuropathy).2,3 Dialysis itself is also a potential source of recurring painful events, such as muscle cramping, abdominal distension and needle sticks.3,4 Overall, pain is thought to be a primary factor contributing to reductions in quality of life for the end-stage renal disease (ESRD) population.5
To encourage the integration of patient-reported outcomes into the delivery of dialysis care, CMS incorporated regular pain assessment as a reporting measure for the Quality Incentive Program starting in 2016.6 For each eligible patient, dialysis facilities are required to report every 6 months on whether pain was assessed using a standardized tool and, for those patients who indicated they were experiencing pain, whether a follow-up plan was documented.
Monthly pain assessment
Given the importance of trends in patient symptoms with time, the clinical leadership team at our organization set a goal of monthly pain assessment for each patient. These assessments are performed by dialysis nurses during the course of routine patient care using the validated Wong-Baker zero to 10 faces pain scale.7,8 Patients who screen positive for pain (defined as a patient rating of two or greater) are asked to complete a follow-up survey to assess the location, duration and source of pain; treatment of pain and use of medications; and the effects of pain on daily life.
We sought to characterize the responses to these routine pain assessments to better understand the prevalence and impact of pain among our patients. Responses from patients on in-center hemodialysis (ICHD) and patients on peritoneal dialysis (PD) were considered separately because the potential types and sources of pain are likely to be different for the two populations due both to differences in the dialysis procedures and in underlying health status. Therefore, it is possible that the perception and burden of pain could differ for patients on ICHD and patients on PD.
Between May 2016 and April 2017, a total of 1,094,897 pain assessments were performed for 173,340 patients on ICHD and 173,739 assessments were performed for 25,820 patients on PD. On average, each patient on ICHD was assessed 6.5 times and each patient on PD was assessed 7.2 times during this period. We observed a remarkably similar pattern in the pain assessment scores for the ICHD and PD groups (see Figure 1). A total of 161,800 (14.8%) pain assessments for the ICHD group and 23,101 (13.3%) for the PD group had scores of two or greater, indicating the presence of pain. Overall, we found 37.5% of patients on ICHD and 40.5% of patients on PD reported experiencing pain at least once during the time period assessed. These findings are consistent with the high prevalence of chronic pain previously reported.1-3 For example, in a recent scoping review commissioned by Kidney Disease: Improving Global Outcomes, the reported prevalence of pain was 21% to 81% for patients on ICHD (weighted mean across 16 studies, 58.6%) and 38% for patients on PD (single study).1
Next, we sought to understand how the presence of pain affects patients’ lives by examining the answers to the follow-up survey. Few responses from patients on either modality indicated that their pain was dialysis related (8.5% ICHD and 5.7% PD surveys) and the most commonly reported pain type was back pain. Most follow-up survey responses from both patients on ICHD (73.8%) and patients on PD (67%) indicated the pain was chronic in nature, having been present for 3 weeks or more.
Use of pain medication was common among patients on both modalities (reported in 74.8% of ICHD and 65.1% of PD surveys). Acetaminophen, the recommended first-line therapy for treatment of pain in patients with chronic kidney disease (CKD),4,9 was the most commonly used medication (about 30% responses) followed by acetaminophen/hydrocodone (about 15% of responses). It is encouraging that these medications appear to be efficacious: In 84.4% of ICHD and 78.2% of PD surveys, patients indicated their pain was relieved by medication.
Pain impacting quality of life
Responses to follow-up survey questions about the effects of pain on quality of life are illustrated in Figure 2. Response patterns were similar for surveys completed by patients on ICHD and patients on PD. Most responders indicated daily activities were affected by the pain they experienced and both patients on ICHD and patients on PD commonly reported pain affected their sleep. Associations between pain and quality of sleep have previously been observed in both pre-dialysis patients with CKD and in patients on ICHD.10,11
In addition, we found many patients perceived that other aspects of their lives, such as appetite, ability to concentration, relationships and feelings of depression were also impacted by their pain. Prior studies have identified an association between chronic pain and symptoms of depression in patients with CKD and patients with ESRD.11,12 Furthermore, studies from our group and others have demonstrated that depressed patients are more likely to be hospitalized and are less likely to be adherent to dialysis treatment schedules, either through missing dialysis treatments or having abbreviated dialysis treatments.13,14 Patients who do not adhere to dialysis treatment schedules are at greater risk for poor outcomes.15 Thus, pain appears to result in a cascade of quality of life consequences that may ultimately result in negative clinical events as well.
Summary and conclusions
Chronic pain is common among both patients on ICHD and patients on PD and has a profound impact on daily life, as well as contributing to poor health outcomes. It is interesting that the responses to both the overall pain assessments and follow-up survey questions were similar for patients on ICHD and patients on PD and few responders indicated pain was related to dialysis.
Taken together, our observations are consistent with literature reports that most pain experienced by patients with ESRD is perceived to be due to comorbid conditions rather than the dialysis procedure itself.1
Over-the-counter medications were reported to alleviate pain in many patients, suggesting low-risk and low-cost interventions can greatly reduce the burden of pain in these patients. Our experience highlights the value of pain screening as a relatively simple practice to elicit information about the patients’ experience that, in turn, allows us to actively address a factor that poses a great burden on their quality of life.
- Davison SN, et al. Semin Dial. 2014;doi:10.1111/sdi.12196.
- Davison SN. Am J Kidney Dis. 2003;doi:10.1053/j.ajkd.2003.08.025.
- Davison SN. Adv Chronic Kidney Dis. 2005;doi:10.1016/j.ackd.2005.03.008.
- Koncicki HM, et al. Semin Dial. 2015;doi:10.1111/sdi.12372.
- Weisbord SD. Semin Dial. 2016;doi:0.1111/sdi.12464.
- End-Stage Renal Disease Quality Incentive Program Payment Year 2017 and Payment Year 2018; Final Rule. Federal Register. 2016;77834-77969.
- Herr KA, et al. Clin J Pain. 1998;14: 29-38.
- Stuppy DJ. Appl Nurs Res. 1998;11: 84-89.
- Pham PC, et al. Clin Kidney J. 2017;doi:10.1093/ckj/sfx080.
- Shayamsunder AK, et al. Semin Dial. 2005;doi:10.1111/j.1525-139X.2005.18218.x.
- Cohen SD, et al. Clin J Am Soc Nephrol. 2007;doi:10.2215/CJN.00820207.
- Davison SN, et al. J Pain Symptom Manage. 2010;doi: 0.1016/j.jpainsymman.2009.08.008.
- Aebel-Groesch K, et al. Presented at American Society of Nephrology Kidney Week; Oct. 31-Nov. 5, 2017; New Orleans.
- Weisbord SD, et al. Clin J Am Soc Nephrol. 2014;doi: 0.2215/CJN.00220114.
- Gray KS, et al. Clinicoecon Outcomes Res. 2017;doi: 10.2147/CEOR.
For more information: Francesca Tentori, MD, MS, is a medical director for outcomes research at DaVita Clinical Research, based in Minneapolis. Nancy Culkin, RN, BSN, CNN, is a director of regulatory affairs at DaVita Inc., based in Denver. Disclosures: The authors report no relevant financial disclosures.