Related article, p. 543
Although reviewing patients’ laboratory data and adjusting dialysis prescriptions and medications are routine tasks for nephrologists, an older person receiving hemodialysis treatment faces challenges that go well beyond Kt/V, hyperphosphatemia, or anemia. In-center dialysis fundamentally changes life’s routine activities and in older people may present even more of a challenge because of the intersection of functional challenges of aging and demands of the dialysis schedule. Although dialysis units include multidisciplinary caregivers, it is not clear that the dialysis unit is well equipped to address the most critical needs of the older patient. Newer models of care such as the End Stage Renal Disease Seamless Care Organizations1 or the Patient-Centered Medical Home2 exist to coordinate care for in-center dialysis patients, but those are not specific to the elderly.
In this issue of Kidney Medicine, Hall et al3 use a framework from the Geriatric Resources for Assessment and Care of Elders (GRACE)4 in a qualitative study to explore how the GRACE model might align with the needs of older adults at dialysis. The GRACE model of care was developed to optimize the functional status and health of the elderly population, improve the geriatric care provided, and prevent nursing home admissions. It entails the intervention of a support team composed of a nurse practitioner and a social worker. The team conducts a comprehensive assessment including a medical and psychosocial history, medication review, functional assessment, and review of social supports and advance directives. The team also evaluates a patient’s safety at home. Thus, this model of care addresses common complications of aging, which might also affect those with end-stage kidney disease.5
The authors assessed 14 in-center hemodialysis patients and 24 dialysis unit personnel (12 nurses or technicians, 2 social worker or dietician, 1 dietician, 1 nurse manager, and 8 nephrologists). The aim of this study was to determine areas in which dialysis patients may need help and support to improve their functional status. Patients were not included if they were nonambulatory, had advanced dementia, were dependent for activities of daily life, were living in long-term care or in hospice care, or were non–English speaking.
A “modified nominal group technique” was used, which is a well-established structured group meeting technique6 to generate and prioritize responses to a specific question by a group of people with a given expertise. The first question asked was “What are the biggest threats to the well-being of older dialysis patients?” and elements of the GRACE model were explored. Nephrologists were interviewed in focus groups that were separated from those including other clinic personnel to avoid concerns regarding power dynamics. The authors identified 4 areas of unmet needs: mobility, medication management, social support, and communication.
This study presents a few limitations. First, it included only 5 dialysis units within a limited geographical area. The number of patients interviewed was small (n = 14). Regarding dialysis personnel, only 3 of them are qualified as “social worker or dietician” (Table 1), which is unfortunate because social workers and dieticians have a unique perspective relative to some of these challenges. The nurses and technicians are likely those who spend the most time with patients during their dialysis treatment, so ideally they would be aware of a broad range of concerns beyond the technical aspects of the dialysis procedure.
Second, it is noteworthy that no complete overlap in broad themes was found after 4 personnel focus groups (including 21 personnel), so 3 additional personnel semi-structured interviews were conducted. It is unclear which roles the personnel included in those first 4 focus groups had, as opposed to those in the additional semi-structured interviews.
Third, the findings of the broad themes were confirmed with personnel, but not with patients out of concern for the burden of re-contacting them.
Many studies exist on the medical challenges and complications that older adults with end-stage kidney disease face, such as frailty,7,8 polypharmacy,9 or poor outcomes10,11 including cardiovascular disease or mortality. However, the pragmatic social issues of patients’ everyday life, such as problems with transportation or medication management, are rarely the primary focus of research studies. Data for dialysis patients’ perception of these issues are scarce and studies are small.12 These aspects of daily living are difficult to quantify in a standardized way for a research study, and more importantly, they are difficult to address without a larger support system or framework. The current study determined areas in which increased support might be called for to address dialysis patients’ needs outside of the dialysis procedure. These findings will likely not surprise those who work with dialysis populations, but the focus on the older population and the use of the GRACE framework are helpful.
How might we move forward to better quantify and support these areas of need? The Centers for Medicare & Medicaid Services run a quality incentive program13 to assess the quality of care provided in dialysis units. This program includes measures such as dialysis adequacy (Kt/V), vascular access type, frequency of hospitalizations, and transplant wait-listing. Since 2014, it also includes an “In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems” (ICH CAHPS) survey.14,15 This is a questionnaire administered to hemodialysis patients inquiring about how well their nephrologist and dialysis staff pay attention to them and treat them with respect. This survey is administered semi-annually to a sample population of adult patients receiving hemodialysis for at least 3 months.
Studies have examined patients’ characteristics associated with better experience based on this survey16 and whether patient satisfaction correlates with dialysis care quality.17 Some of the supplemental questions are about transportation: how easy it is for the patient to get to the dialysis unit, whether they have to park their car nearby, how easy it is to find parking, or whether the patient has ever reached out to the unit for help with transportation and whether help was adequate. Unfortunately, the supplemental questionnaire has not been administered in a standardized way, and to our knowledge, its answers have not been studied. Although assessing patients’ transportation issues is certainly not a quality metric, it is a crucial step toward the improvement of patients’ quality of life. Future research using answers to the supplemental material of the ICH CAHPS survey, or adding more relevant questions to this survey, may prove helpful to better understand and address the transportation challenges, among others, of in-center dialysis patients.
This qualitative study brings insight into the significant challenges of elderly in-center dialysis patients’ everyday lives. It finds that these include the lack of social support and communication and the need for help with medication management and transportation. There is no doubt that these unmet needs deeply affect patients’ quality of life. They are complex issues and obviously do not have a 1-size-fits-all type of solution. The first step toward the solution is to raise awareness of the problem, which this study accomplishes. Nephrologists will likely not be able to fix these issues without the contribution of a team of caregivers and without appropriate funding support. Policy makers considering changes to the structure of dialysis care could consider options that take these needs into account.
Article Information
Authors’ Full Names and Academic Degrees
O. Alison Potok, MD, and Dena E. Rifkin, MD, MS.
Support
Dr Potok was supported by the American Kidney Fund Clinical Scientist in Nephrology Fellow Program and Akebia Therapeutics, Inc. Dr Rifkin was supported by Veterans’ Affairs Merit award H160180 (Health Services Research and Development).
Financial Disclosure
The authors declare that they have no relevant financial interests.
Peer Review
Received August 7, 2020, in response to an invitation from the journal. Direct editorial input by the Editor-in-Chief. Accepted in revised form August 18, 2020.
References
- 1.Parker T.F., Aronoff G.R. The medical director in integrated clinical care models. Clin J Am Soc Nephrol. 2015;10(7):1282–1286. doi: 10.2215/CJN.05120514. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Porter A.C., Fitzgibbon M.L., Fischer M.J. Rationale and design of a patient-centered medical home intervention for patients with end-stage renal disease on hemodialysis. Contemp Clin Trials. 2015;42:1–8. doi: 10.1016/j.cct.2015.02.006. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Hall R., Rutledge J., Colón-Emeric C., Fish L.J. Unmet needs of older adults receiving in-center hemodialysis: a qualitative needs assessment. Kidney Med. 2020;2(5):543–551. doi: 10.1016/j.xkme.2020.04.011. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Counsell S.R., Callahan C.M., Buttar A.B., Clark D.O., Frank K.I. Geriatric Resources for Assessment and Care of Elders (GRACE): a new model of primary care for low-income seniors. J Am Geriatr Soc. 2006;54(7):1136–1141. doi: 10.1111/j.1532-5415.2006.00791.x. [DOI] [PubMed] [Google Scholar]
- 5.Bhattarai M. Geriatric issues in older dialysis patients. R I Med J. 2016;99(7):15–18. [PubMed] [Google Scholar]
- 6.Søndergaard E., Ertmann R.K., Reventlow S., Lykke K. Using a modified nominal group technique to develop general practice. BMC Fam Pract. 2018;19(1):117. doi: 10.1186/s12875-018-0811-9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Johansen K.L. The frail dialysis population: a growing burden for the dialysis community. Blood Purif. 2015;40(4):288–292. doi: 10.1159/000441575. [DOI] [PubMed] [Google Scholar]
- 8.Bao Y., Dalrymple L., Chertow G.M., Kaysen G.A., Johansen K.L. Frailty, dialysis initiation, and mortality in end-stage renal disease. Arch Intern Med. 2012;172(14):1071–1077. doi: 10.1001/archinternmed.2012.3020. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Parlevliet J.L., Buurman B.M., Pannekeet M.M.H. Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study. BMC Nephrol. 2012;13(1):30. doi: 10.1186/1471-2369-13-30. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Boulware L.E., Liu Y., Fink N.E. Temporal relation among depression symptoms, cardiovascular disease events, and mortality in end-stage renal disease: contribution of reverse causality. Clin J Am Soc Nephrol. 2006;1(3):496–504. doi: 10.2215/CJN.00030505. [DOI] [PubMed] [Google Scholar]
- 11.van Loon I.N., Wouters T.R., Boereboom F.T.J., Bots M.L., Verhaar M.C., Hamaker M.E. The relevance of geriatric impairments in patients starting dialysis: a systematic review. Clin J Am Soc Nephrol. 2016;11(7):1245–1259. doi: 10.2215/CJN.06660615. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Chenitz K.B., Fernando M., Shea J.A. In-center hemodialysis attendance: patient perceptions of risks, barriers, and recommendations. Hemodial Int. 2014;18(2):364–373. doi: 10.1111/hdi.12139. [DOI] [PubMed] [Google Scholar]
- 13.CMS ESRD Quality Incentive Program. Accessed July 27, 2020. https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/ESRDQIP
- 14.Dad T., Tighiouart H., Fenton J.J. Evaluation of non-response to the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) survey. BMC Health Serv Res. 2018;18(1):790. doi: 10.1186/s12913-018-3618-4. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Weidmer B.A., Cleary P.D., Keller S. Development and evaluation of the CAHPS (Consumer Assessment of Healthcare Providers and Systems) survey for in-center hemodialysis patients. Am J Kidney Dis. 2014;64(5):753–760. doi: 10.1053/j.ajkd.2014.04.021. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Dad T., Tighiouart H., Lacson E., Meyer K.B., Weiner D.E., Richardson M.M. Hemodialysis patient characteristics associated with better experience as measured by the In-center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) survey. BMC Nephrol. 2018;19(1):340. doi: 10.1186/s12882-018-1147-3. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Kshirsagar A.V., Tabriz A.A., Bang H., Lee S.-Y.D. Patient satisfaction is associated with dialysis facility quality and star ratings. Am J Med Qual. 2019;34(3):243–250. doi: 10.1177/1062860618796310. [DOI] [PMC free article] [PubMed] [Google Scholar]