Summary
Person-centered care has been advanced as an effective framework for improving patient satisfaction. By considering biopsychosocial factors — including socioeconomic status, environment, intellectual development, health, cultural factors, and social interactions — such care can help optimize treatment outcomes, advance health equity, and decrease costs. However, these factors, adopted by the medical field and labeled social determinants of health, have been inconsistently evaluated, thereby missing an opportunity to truly understand the individual needing care. Furthermore, a balance of specific social determinants of health factors and assessments of cognition and functional status can improve understanding of a patient and their context. The authors explore new possibilities with a shift in assessment methodologies, using end-stage renal disease as a model, and present a vision for a more effective person-centered assessment model, which is increasingly possible — and needed — in the modern health care environment. A surprising finding from the qualitative interviews was the importance of social connections formed during in-center dialysis. Additional key considerations include financial barriers, transportation challenges due to financial and mobility limitation, housing insecurity, insufficient knowledge of kidney disease and treatment, and limited contact with nephrologists. This article proposes potential methods for improvement of care that can simultaneously improve patient engagement and outcomes.
Editors’ note: This case study is an early release from Volume 5, Issue 2 of NEJM Catalyst Innovations in Care Delivery. It will appear alongside other issue 5.2 articles in February 2024.
Person-centered care is particularly critical for those who experience chronic health conditions such as chronic kidney disease (CKD), which affects approximately 15% of adults in the United States and disproportionately affects people of low income and communities of color.1 Complicating care, up to 90% of people with CKD are unaware they have it. This is attributed to an absence of symptoms until later stages of the disease, which increases the likelihood of progression to kidney failure and end-stage renal disease (ESRD). Current treatments for ESRD include peritoneal dialysis, hemodialysis, and kidney transplant.
Total inflation-adjusted Medicare expenditures for patients with ESRD increased from $47.1 billion in 2010 to $53.0 billion in 2019.2 Between 2010 and 2020, inflation-adjusted per-patient-per-year spending for ESRD decreased from $96,451 to $79,439. The greatest decrease was in inpatient spending, to $25,313 in 2020 from $32,886 in 2010. Outpatient spending also decreased, to $27,973 in 2020 from $30,966 in 2010.
Although transplantation has the potential to significantly improve quality of life, reduce mortality, and decrease costs, only 13% of patients are deemed eligible for the transplant list, and there are no standardized protocols for selection, potentially revealing another selection bias in survival rates.2 Certain populations are disproportionately disadvantaged when it comes to being waitlisted. The following groups are significantly less likely to be listed for transplantation and hence many fewer receive transplants: older adults; Black, Latinx/Hispanic, Native American/Alaska Native, Native Hawaiian/Pacific Islander, and Asian American people; people of low income; and people with disabilities.3–6 In addition to these selection biases, such patients are also more likely to be dually eligible, that is, those who have insurance coverage by both Medicare and Medicaid, with low income (average less than $20,000 per year) and advanced age (≥65 years) or disability, and are likely to experience very different challenges than individuals covered by Medicare alone.
Needs-Finding in ESRD
In March 2023, the authors launched a quality improvement project focused on person-centered ESRD care delivery. This project was conducted as an independent study by researchers based at Stanford University’s Clinical Excellence Research Center in conjunction with DaVita Kidney Care. We developed a survey (Appendix) and worked from a list provided by DaVita Kidney Care of dually eligible patients who were receiving dialysis. We focused on dually eligible patients because there are approximately 12.3 million people7 in the United States who are dually eligible, and more than 30% of them experience CKD. In 2020, Medicare inflation-adjusted expenditures for ESRD beneficiaries with fee-for-service Medicare was $65,817, higher for Medicare Advantage beneficiaries at $75,263, and much higher for dually eligible beneficiaries at $94,532.2
Top themes identified by individuals undergoing dialysis treatment were related to food insecurity, low rates of home dialysis, transportation barriers, mobility limitations, housing insecurity, social isolation, and cognitive decline.
A semistructured survey was prepared with primarily open-ended questions that gauged patients’ dialysis experiences with respect to barriers to care they faced, knowledge barriers in ESRD/dialysis, perspectives on the practice of home dialysis, goals of care, and highlights in their care journey that could be used to shape improved care delivery. This approach was taken by examining the literature and adapting for qualitative surveys of patients’ experience in dialysis. From a list of 48, we successfully reached 28 patients, but only nine agreed to participate (Table 1). During interviews with this group, we found that the same general themes recurred and determined that we had reached a saturation of themes. This group included participants who resided in urban, suburban, or rural neighborhoods. Interviews were conducted via telephone. The duration of each interview ranged between 29 and 153 minutes (mean [standard deviation], 51.3 [40.3] minutes).
Qualitative interviews with dually eligible ESRD patients were conducted to understand their multifaceted social needs. Interviews were conducted until saturation of themes was reached. Top themes identified by individuals undergoing dialysis treatment were related to food insecurity, low rates of home dialysis, transportation barriers, mobility limitations, housing insecurity, social isolation, and cognitive decline (Table 2).
Nearly all respondents expressed a belief that they were eating healthfully, while reporting diets consisting mostly of fast foods, frozen meals, and animal-based protein. Meal choices are often dictated by what individuals can afford with food assistance programs and/or can prepare with only a microwave or a limited cooking repertoire.8 However, all interviewees reported that they had been given “kidney-friendly” diet recommendations by clinicians, who often fail to consider the reality of the patient’s unique challenges, cultural factors, and preferences. Such a one-size-fits-all approach may limit the effectiveness of treatment plans, diminish rapport between patients and providers, and compound challenges, including limited patient engagement, fragmented care coordination, and suboptimal treatment outcomes.
Approximately 90% of all dually eligible patients in the United States receive dialysis in outpatient dialysis centers despite the goal of the U.S. Department of Health and Human Services of having 80% of patients with ESRD undergoing dialysis at home or receiving a transplant.9,10 In accordance with previous literature, we found that dually eligible patients were less likely to engage in home dialysis due to challenges related to social determinants of health (SDOH), such as housing instability, lack of resources or support systems, and limited health literacy.11,12 In addition, previously reported improved outcomes for home dialysis over in-center dialysis may be applicable only to specific subgroups of patients, such as those with significant support systems, stable housing, and those in better overall health, which often excludes dually eligible patients.13,14
As with nutrition recommendations, health care–centric assumptions about quality of life with different kidney care options might contradict an individual’s preferences; therefore, treatment options warrant tailoring to nuances not routinely captured in clinical settings.
Although in-center dialysis may pose a hardship, both in terms of time (three times a week, for several hours a day) and accessibility to patients who may have to travel 30–60 minutes in each direction to the nearest center, all of the dually eligible in-center interviewees stated that they preferred in-center dialysis for social connection; only one was open to in-home dialysis. Almost all (eight of nine) had to stop working due to dialysis, further limiting outside contact with other people. Interviewees expressed that they had formed strong friendships with staff and other patients through seeing them several times a week, over many years. For example, interviewees stated that staff would make ethnic, home-cooked meals to share; that talking with fellow dialysis patients was their social connection; and that seeing the same people multiple times a week for years was its own support group. Interviewees also stated that they utilized their dialysis time to learn about treatment options, or other tips, from fellow dialysis patients. As with nutrition recommendations, health care–centric assumptions about quality of life with different kidney care options might contradict an individual’s preferences; therefore, treatment options warrant tailoring to nuances not routinely captured in clinical settings. Ultimately, specific challenges and needs and preferences must be addressed if we are to advance kidney health for all patients.
Broadening Assessment to Include Cognitive and Functional Status
In addition to physical decline, CKD/ESRD has been linked to an increase in risk for cognitive decline, as have social isolation and loneliness, further emphasizing the importance of social engagement and the inclusion of cognitive and functional screening in addition to SDOH screening.15–17 Dually eligible individuals who experience cognitive challenges may have difficulty understanding their disease and treatment options. In interviews, some dually eligible patients (six of nine) expressed a lack of comprehension regarding what dialysis was or what dialysis entailed even after education by the dialysis center and/or clinicians, whereas others (two of eight) indicated that they preferred to be naive regarding their disease or treatments; many (six of nine) said that they hoped that providers would spend more time explaining procedures and treatments. Some (three of nine) patients expressed dismay at how dialysis has restricted their lives and daily activities. Persons living with a complicated disease such as ESRD and, in particular, those experiencing cognitive decline would uniquely benefit from increased time with clinicians so that the clinicians can check for comprehension and iterate the care plan, as needed and on a more timely basis.
A majority of interviewees (seven of nine) did not drive, which often was attributed to cognitive and mobility challenges, as well as financial and SDOH barriers. Functional difficulties with bathing, cooking, or other activities of daily living were also often reported (seven of nine). This was especially salient for those who lived alone or lacked support. Several of these patients (three of seven) relied on professional caregivers; some visited three or four times a week, which underscores the importance of understanding individual needs and barriers to engaging in critical health-promoting behaviors.
Understanding Context
Clinical, cognitive, and functional assessments can help to evaluate multidimensional risks for poor health outcomes, as well as provide opportunities for prevention and early intervention, especially for older adults who are more likely to experience a confluence of chronic conditions. Since December 2020, the Centers for Medicare & Medicaid Services (CMS) Advancing Interoperability and Improving Prior Authorization Processes Proposed Rule (85 FR 82586, which was later incorporated into the pending proposed rule CMS-0057-P), has called for accelerating the adoption of standards related to social risk factor data. In the wake of these calls to action, nearly one-quarter of hospitals are now screening for SDOH.18,19 When used in tandem with cognitive and functional assessments, these tools have shown enormous potential for identifying and serving complex, high-needs populations such as dually eligible patients with ESRD. For example, health technology companies have already effectively used functional and cognitive screening data to show how these factors are predictive of ED visits.20
One critical finding was the disparity between clinical recommendations and the lived realities of patients, especially in terms of diet and treatment options.
CMS has expressed interest in improving best practices for collecting functional, cognitive, and social risk data; new technologies should be leveraged to efficiently capture such data across a range of contexts.21 Rather than merely combining lengthy combinations of cognitive and functional assessments with SDOH indicators, new approaches aligned with the realities of telehealth, asynchronous care, and remote patient monitoring present exciting prospects for reimagining the assessment and triage process. For example, artificial intelligence–assisted telehealth, which includes routine wellness questions and evaluates responses, can easily capture important health data for patients with ESRD, potentially predicting future health issues. In addition, experimental wearable devices that assess social engagement could provide a more holistic and continuous picture of patient health, improving accuracy and outcomes without overburdening clinicians.22
To craft such integrated assessments, several prerequisites should be considered:
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Instruments should capture functional, cognitive, and SDOH data across medical, social, and behavioral health domains, to improve health equity and promote shared decision-making.
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Ease of use, workflow integration, and clinical and patient acceptability of these instruments must be considered and codesigned.
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Streamlined screening instruments must be tied to modifiable outcomes of interest and be incentivized by informing standardized billing metrics.
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Instruments must practically incorporate medical, social, and behavioral health needs to better inform clinician treatment planning.
Looking Ahead
Moving forward, the potential of this pilot qualitative study to shape care delivery for dually eligible patients with ESRD is noteworthy, particularly given the relative dearth of studies examining this unique clinical and demographic intersection. Despite the small number of interviews, the sessions lasted on average nearly 1 hour and encouraged open-ended input from participants on their experience of care. One critical finding was the disparity between clinical recommendations and the lived realities of patients, especially in terms of diet and treatment options. Individuals additionally face unique challenges such as financial limitations or lack of social support, which can hinder adherence to home-based care plans.
Based on these insights, we recommend that clinicians engage in conscientious, thorough discussions with patients at the outset of treatment — taking into account their social, cultural, and personal circumstances — to ultimately improve outcomes and drive down costs in the long term. For instance, dietary recommendations should be not only “kidney friendly,” but also realistic and achievable within the patient’s means. Similarly, decisions about dialysis modalities should involve a detailed discussion about the patient’s living conditions and support systems. These practices are not just suggestions, but important steps toward truly person-centered care, ensuring that treatment plans are medically sound as well as practically feasible and aligned with individual preferences. Thus, the findings from the current study may reinforce critical practices and ongoing shifts in kidney care, including an improved focus on the social determinants of kidney health. Further, it may open new vistas into opportunities to improve staffing, processes, or clinical/SDOH-related activities.
Our experience suggests that a thorough and empathetic understanding of the individual’s socioeconomic background, cultural influences, and personal preferences is critical.
In addressing the optimal mix of care delivery methods for patients with ESRD, it is important to consider the individualized needs of each patient, particularly those who are dually eligible. Our findings underscore the need for a more nuanced approach to care delivery. For instance, although at-home dialysis offers convenience and comfort, it may not be suitable for patients facing social isolation or financial barriers that may preclude ease of application in the home. In-clinic dialysis, on the other hand, may provide essential social interaction and support, but may present transportation and mobility challenges. Lastly, although kidney transplantation is the most desirable option for many, its limited availability and eligibility criteria make it an inaccessible choice for a significant portion of patients. Therefore, we recommend a person-centered framework in which care delivery is tailored based on a comprehensive assessment of each individual’s medical, social, and personal needs. This approach would enable more effective and personalized treatment plans, enhancing both outcomes and quality of life.
In implementing a person-centered care model for ESRD, particularly for dually eligible individuals, health care providers may encounter several challenges. First, accurately assessing and integrating individual needs and preferences into care plans can be complex, given the diverse and often underrepresented backgrounds of these individuals. Our experience suggests that a thorough and empathetic understanding of the individual’s socioeconomic background, cultural influences, and personal preferences is critical. This may require additional training for health care providers in cultural competence and communication skills. Furthermore, it is critical to measure what matters and to concretely identify the full breadth of the individual experience for those who engage in dialysis.
To this end, the creation of integrated assessment instruments that more effectively capture the whole person — including the full spectrum of lived experiences, context, and behaviors — offers much promise in building person-centered care models. For clinicians, improved assessments that consider clinical, cognitive, functional, and social determinants of health can improve the identification of clinical risks without additional burden and enable earlier, upstream intervention. For health plans and the government, standardized novel data collection instruments can foster progress toward value-based care and national policy goals. For individuals, such as those with ESRD, more holistic measures and new technologies can help with the efficient capture of the full depth and breadth of an individual’s experience and better align health care with what matters most to patients.
However, challenges lie in the adoption of new technologies for patient monitoring and data collection. Although these technologies offer promising avenues for enhancing care, their integration into existing health care systems can be hindered by logistical, financial, and technical barriers. To address these challenges, we recommend collaborative efforts involving multidisciplinary teams, including IT specialists, to ensure smooth technology integration and staff training. Health care organizations should consider pilot-testing these technologies in selected patient groups to identify and address potential issues before wider implementation. Finally, maintaining consistent and open communication throughout this process is vital to ensure that needs and concerns are continually addressed, fostering trust and engagement in the care journey.
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