Patient care experience with in-center hemodialysis: How clinicians can assess and incorporate in their practice
In the past several years, patients’ experience of care has garnered significant attention within hospitals and health systems and is now increasing in importance and visibility within the dialysis community.
In a 2018 survey of 65 nephrologists, 98% agreed that their patients’ experience while receiving dialysis was important to them. However, 28% reported they had a strong understanding of what factors drive patient experience.1 CMS further emphasized the importance of patient experience by introducing the patients’ experiences star rating in October 2018.
Within this context, there is a strong need to foster an open dialogue on this topic within the renal community. What does patient experience mean and how is it measured? What factors have an impact? What can be done to improve the experience of patients receiving chronic dialysis? This article, provides a summary of current understandings of patient experience and offers perspective to debunk common misconceptions in this area.
Definition of patient experience
Patient experience is defined by the Beryl Institute as the “sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.”2 For the medically complex patient on dialysis, interactions occur frequently and include those with care teams and staff within multiple settings: the dialysis center, hospital, primary care clinics, specialty clinics (which care for patients’ frequent comorbidities), vascular access clinics, behavioral health centers and more. As patients on in-center hemodialysis (ICH) typically visit the dialysis center three times a week for treatment (in addition to other medical appointments), the ongoing experience as patients can have a profound impact on their overall lives.
In an attempt to better understand elements that constitute a positive patient experience for those receiving dialysis, we conducted a series of interviews from 2016 through 2017 with approximately 200 patients on chronic hemodialysis and identified the following three main areas that patients perceived as having an impact on their experience of care:
- safety — Patients believe no harm will come to them;
- clinical quality — Patients recognize they will get the care they need when they need it; and
- caring experience — Patients feel cared about and respected by their clinical team.
These findings are not surprising, as these concepts are key cornerstones of high-quality care. While specific metrics exist to monitor safety and clinical quality, only in recent years has there been a concerted effort to develop tools that measure the care experience of patients on dialysis.
In the United States, CMS mandates assessment of the experience of patients on in-center hemodialysis using the ICH Consumer Assessment of Healthcare Providers and Systems (CAHPS). Adapted in part from the hospital CAHPS instrument, it is administered in dialysis clinics in the spring and fall by a third-party vendor. Eligible patients are older than 18 years, have received in-center hemodialysis for more than 90 days, and are not in hospice or an institution.
ICH-CAHPS is composed of 35 core questions (excluding skip-logic questions, demographic questions, etc.) that are summarized into six publicly reported measures (see Figure 1).
While this is a comprehensive list, ICH-CAHPS obviously does not assess “the sum of all interactions” during the continuum of care, nor does it necessarily address all areas that are most important to patients. Furthermore, the instrument length and current administration methods are perceived as burdensome and are likely to limit many patients’ willingness and ability to respond. Finally, ICH-CAHPS was developed to assess the experience related to in-center hemodialysis, and no instruments are currently available for patients on home hemodialysis or PD.
Misconceptions and reality
Currently, the dialysis community is skeptical of the value of ICH-CAHPS as the optimal instrument to assess the care experience of patients on dialysis. There is also a knowledge gap around clinical practices and behaviors that can affect ICH-CAHPS. Despite these limitations, ICH-CAHPS is the currently mandated instrument and a benchmark tool, both within and across dialysis facilities. With this context, it is important to shed light on some of the most common misconceptions around ICH-CAHPS. By doing this, we hope to help the reader to interpret ICH-CAHPS results more objectively and leverage results to improve the overall experience of patients on dialysis.
Misconception 1: Response rates are low; therefore, scores are not meaningful.
Reality: The national patient response rate has remained stable at approximately 33% for the past several survey periods. This aligns with or exceeds the average response rate for surveys in the general population (once accounting for survey administration methods).3 While patients who are able and willing to complete the survey are likely a selected group and not representative of the ICH population as a whole, it is important to remember that ICH-CAHPS reflects the experience of a substantial number of patients across the United States, and the results likely reflect, to a certain extent, the experience of other fellow patients.
Misconception 2: Only satisfied or dissatisfied patients fill out the survey.
Reality: According to the 2018 nephrologist survey mentioned above, most nephrologists expected patient responses on the ICH-CAHPS survey to be either bimodal or negative. However, the 2017 ICH-CAHPS survey responses were significantly leaning toward positive scores — and this has been consistent since the inception of the survey in 2015 (see Figure 2). Less than 14% of patients rated their nephrologist between 0 and 6, whereas 60% rated their nephrologist between 9 and 10, which is the best-possible score.
Part of the misconception about which patients engage most in the ICH-CAHPS survey is due to the ICH-CAHPS top-box methodology, which measures the percentage of patients who gave very favorable scores (eg, 9 and 10 on a scale of 0 to 10). Therefore, a 60% score would indicate that most patients feel their nephrologists do an excellent job; not that the average score was 6 out of 10.
Misconception 3: Time spent with patients is the main driver of how patients rate their experience with their nephrologist.
Reality: Research has shown that quality interactions between patients and their nephrologist are more important than the frequency or duration of the interactions.4 A positive caring experience (ie, the patient feels the physician cares about him or her as a person) is a key driver in overall nephrologist ratings, irrespective of the amount of time a clinician is able to spend with a given patient.
Misconception 4: Patients are not able to objectively rate their experience.
Reality: There may be some subjectivity in how anyone fills out a survey. However, that does not mean the perceptions are inaccurate, invalid or diminished in importance. A survey for nephrologists on their dialysis centers found nephrologists’ perceptions of their experiences were closely aligned with those of their ICH patients, as measured by the ICH-CAHPS scores for the same facility.5 This alignment may indicate that physicians and patients have similar experiences and perspectives, and/or physicians’ perceptions and overall attitudes have a large influence on patients’ perceptions of physicians, dialysis centers and staff.
While these observations support the notion that CAHPS captures important aspects of the care experience, patient perspectives should always be taken into account, even when these do not align with those of their nephrologist and care team.
Overall, these observations support that, despite its limitations, ICH-CAHPS provides important information on patients experience of care. As a standardized and validated assessment tool, ICH-CAHPS provides insight on patients’ perspectives of care and allows objective comparisons within a certain dialysis center over time and across dialysis centers. In addition, public reporting of facility ICH-CAHPS scores enhances transparency and accountability for clinicians and dialysis organizations and creates incentives to improve quality of care.
Patient experience, clinical outcomes
In addition to being a key outcome per se, patient experience is strongly correlated with clinical outcomes. This goes against another misconception: patient experience and clinical outcomes are at odds with each other, and if a care team focuses on delivering an optimal patient experience, clinical care and outcomes will suffer. However, research has shown these outcomes are positively correlated and can work in tandem to help maximize clinical achievements. Patient experience, when delivered well, can enable a stronger patient-clinician partnership to reach clinical goals and improve outcomes.
The connection between patient experience and clinical outcomes has been observed across a variety of care settings and clinical outcomes (see Figure 3).
In addition, a study published in the American Journal of Medical Quality reviewed the relationship between ICH-CAHPS scores in dialysis centers and publicly reported clinical outcomes through the CMS Five Star Quality Rating System and Quality Incentive Program.9 The study found a direct association between patient experience and publicly reported dialysis center clinical metrics.
Affect the patient experience
A study conducted by the Beryl institute indicated the three top drivers of a positive patient experience throughout the health care industry involve patients feeling listened to, respected and communicated with in a way they understand. In the study, patients confirmed that human interactions are the most important aspect of their experience and also believed a good experience contributes to their healing.10 Similar findings were confirmed in a recent survey of DaVita patients, indicating a positive caring experience with the nephrologist and clinic staff were key to patient experience.
These studies support what clinicians already know, both as health care providers and from their own experience as patients: Everyone wants to be treated with respect and feel acknowledged and cared about as a person.
The challenge is to identify ways we can improve in making our patients feel this way more consistently in all interactions, whether it be ensuring the patients understand safety precautions or feel caregiver empathy. It is important to recognize that caregiver intent has no impact on patients unless caregivers can help patients truly believe, recognize and feel these intentions. Even when a center provides superior clinical care, if caregivers do not effectively communicate with their patients, the patients may never recognize the quality of their care.
Cultivating and maintaining a consistently positive patient experience is the biggest challenge currently faced by the dialysis community. We are now at a frontier with understanding what is ultimately important to our patients, and what can be done to have a positive impact. Working together as a community to find creative solutions will help improve patient experience and quality of life.
- For more information:
- Francesca Tentori, MD, MSCI, is the medical director for outcomes research and patient empowerment at DaVita Kidney Care.
- Sandy Levine, MBA, is the senior director of patient experience at DaVita Kidney Care.
- Martha Wofford, MBA, is group vice president at DaVita Kidney Care.
- Allen R. Nissenson, MD, is chief medical officer at DaVita Kidney Care.
- 1. DaVita internal survey. 2018.
- 2. The Beryl Institute. www.theberylinstitute.org/page/DefiningPatientExp.
- 3. Schonlau M, et al. Conducting Research Surveys via E-mail and the Web. Santa Monica, California: RAND Corporation, 2002.
- 4. The Advisory Board, 2015. www.advisory.com/research/physician-executive-council/resources/posters/5-myths-physicians-believe-about-patient-experience?wt.ac=banner_pec_info___5mythspatexp_.
- 5. DaVita internal survey. 2018.
- 6. Boulding W, et al. Am J Manag Care. 2011;17:41-48
- 7. Glickman SW, et al. Circ Cardiovasc Qual Outcomes. 2010;doi: 10.1161/circoutcomes.
- 8. Bertakis KD, et al. J Am Board Fam Med. 2011;doi:10.3122/jabfm.2011.03.100170.
- 9. Kshirsagar AV, et al. Am J Med Qual. 2018;doi:10.1177/1062860618796310.
- 10. The Beryl Institute, 2018. www.theberylinstitute.org/page/PXCONSUMERSTUDY.