Abstract
Background and objectives Individuals receiving in-center hemodialysis experience a high symptom burden that detrimentally affects their quality of life. There are few evidence-based interventions for symptom relief in this population. To stimulate innovation in symptom management, data on patient symptom prioritization and treatment preferences are needed. We undertook this study to (1) identify patient-prioritized symptoms for the development of symptom relief therapies and (2) elicit preferences for treatments among individuals receiving hemodialysis. Design, setting, participants, & measurements We conducted a mixed methods study that included focus groups in Carrboro, North Carolina; Tucson, Arizona; and Seattle, Washington and a nationally distributed online survey. Focus group transcripts were analyzed for patterns, and the highest priority symptoms were determined on the basis of frequency and report severity. We used focus group findings to inform survey items. Focus group and survey results were crossvalidated and synthesized for final symptom prioritization. Results There were 32 participants across three focus groups and 87 survey respondents from 27 states in the United States. The physical symptoms of insomnia, fatigue, muscle cramping, and nausea/vomiting and the mood symptoms of anxiety and depressed mood were reported by participants in all focus groups. Among survey respondents, fatigue (94%), cramping (79%), and body aches (76%) were the most common physical symptoms, and feeling depressed (66%), worried (64%), and frustrated (63%) were the most common mood symptoms. The top-prioritized symptoms were consistent across focus group and survey participants and included the physical symptoms insomnia, fatigue, and cramping and the mood symptoms anxiety, depression, and frustration. Participants indicated that symptom frequency, duration, unpredictability, and social and financial effects factored most heavily into symptom prioritization. Conclusions Patients prioritized the physical symptoms of insomnia, fatigue, and cramping and the mood symptoms of anxiety, depression, and frustration as the top symptoms for which to find new therapies.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 735-745 |
| Number of pages | 11 |
| Journal | Clinical Journal of the American Society of Nephrology |
| Volume | 13 |
| Issue number | 5 |
| DOIs | |
| State | Published - May 7 2018 |
Bibliographical note
Funding Information:This work was supported by the Kidney Health Initiative (KHI), a public-private partnership between the American Society of Nephrology, the US Food and Drug Administration, and .75 member organizations and companies to enhance patient safety and foster innovation in kidney disease. KHI funds were used to defray costs incurred during the conduct of the project, including project management support, which was expertly provided by American Society of Nephrology staff members, Melissa West, Ryan Murray, and Elle Silverman. There was no honorarium or other financial support provided to the KHI workgroup members. J.E.F. is supported by National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health grant K23 DK109401. M.B.R. is supported by grant KL2 TR000421 from the National Center for Advancing Translational Sciences.
Funding Information:
The authors would like to thank all study participants for sharing their experiences and perspectives about symptoms related to in-center hemodialysis. The authors also thank the following research liaisons who assisted with focus group and survey coordination: Manisha Jhamb (University of Pittsburgh), Klemens Meyer (Tufts University), and Bijin Thajudeen (University of Arizona). The authors acknowledge Dialysis Clinic, Incorporated (Karen Majchrzak and Klemens Meyer) and the American Association for Kidney Patients (Paul Conway) for their support of the study survey. This work was supported by the Kidney Health Initiative (KHI), a public-private partnership between the American Society of Nephrology, the US Food and Drug Administration, and >75 member organizations and companies to enhance patient safety and foster innovation in kidney disease. KHI funds were used to defray costs incurred during the conduct of the project, including project management support, which was expertly provided by American Society of Nephrology staff members, Melissa West, Ryan Murray, and Elle Silverman. There was no honorarium or other financial support provided to the KHI workgroup members. J.E.F. is supported by National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health grant K23 DK109401. M.B.R. is supported by grant KL2 TR000421 from the National Center for Advancing Translational Sciences.
Funding Information:
J.E.F. has received speaking honoraria from Dialysis Clinic, Incorporated; American Renal Associates; the American Society of Nephrology; the National Kidney Foundation; Baxter; and multipleuniversities.J.E.F.hasreceivedresearchfunding forstudies unrelated to this project from the Renal Research Institute, a sub-sidiaryofFreseniusMedicalCare,NorthAmerica.A.B.P.hascurrent funding from the Food and Drug Administration and the Renal Research Institute. A.B.P. has served as a consultant for Pfizer Inc., AMAG Pharmaceuticals, and Rockwell Medical. W.L.S.P. has received speaking honoraria from the American Society of Nephrology, the National Kidney Foundation, and the American Nephrology Nurses Association and has received research funding in the past 2 years for studies unrelated to this project from the University of Minnesota College and AstraZeneca.
Publisher Copyright:
© 2018 by the American Society of Nephrology.