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Wael Hussein, MD, is senior director of clinical research at Satellite Healthcare and an adjunct assistant professor at Stanford School of Medicine. He can be reached at husseinw@satellitehealth.com.

Disclosures: Hussein reports no relevant financial disclosures.
March 10, 2021
3 min read

On World Kidney Day, nephrology community should focus on patient-centered care


Wael Hussein, MD, is senior director of clinical research at Satellite Healthcare and an adjunct assistant professor at Stanford School of Medicine. He can be reached at husseinw@satellitehealth.com.

Disclosures: Hussein reports no relevant financial disclosures.
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Shortly after the COVID-19 pandemic started, recognition of the value of telehealth – although long overdue – became clear in an environment where person-to-person contact was minimized.

Before that, we were inching our way along for many years in efforts to make it happen. Why were we so slow in embracing this technology? Despite the burdens of in-person visits, we were comfortable with the status quo. When the pandemic hit, we suddenly had to come out of our comfort zone, and telehealth became the new norm. It is a good example of what we can achieve when we focus on what benefits our patients.

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Kidney care has saved lives in the last few decades with advances on multiple fronts. Yet, it is due for a shake-up. People with kidney disease, particularly those on dialysis, experience poor quality of life, and we need to change that. Fatigue, frailty and many other symptoms are common, and patients are unable to continue engaging with social life, notwithstanding the high mortality and hospitalization rates.

Yet, we pat ourselves on the shoulder for achieving outcome measures such as Kt/V and biomarkers that most patients do not understand. This, I would argue, is the same dancing around the fence we experienced with telehealth before the pandemic. Feeling comfortable with what we have precludes us from pursuing the changes that are necessary.

World Kidney Day is a good time to start.

Person-centered care

Our traditional training and practice of nephrology focus on the disease and are guided by population-based patterns. This approach, however, does not consider the unique physical, emotional and social characteristics of the person with the disease, or their values and aspirations.

In contrast, person-centered care takes these aspects in consideration and renders the evidence as guidance instead of a mandate. To switch to person-centered care, we will need to adopt shared decision-making and care directed by patient goals. The switch will require significant changes in the system, including training of clinicians, establishing methods for clear communication of patient goals and coordination of care.

Regulators need to stop holding the stick against practices that do not achieve traditional metrics because clinicians now are addressing the goals of the individual patient.

Wael Hussein

The inclusion of patient activation as a quality metric in the Kidney Care Choices (KCC) model demonstration, now delayed until January 2022, is a welcome move. Patient activation is a measure of the patient’s knowledge, skill and confidence in managing their own health care. Research has shown patients with high activation are more likely to adopt healthy lifestyles, such as exercise and diet; avoid health damaging behaviors, such as smoking; seek preventative care, and are more adherent to mediations. They also have fewer emergency room visits and incur lower costs of care. Activated patients report better quality of life and higher satisfaction with care. We need to adopt interventions that can increase activation, including health coaching, peer mentoring and more patient involvement in their dialysis care.

Balanced score card

Finally, we need to evolve our quality metrics to a balanced score card that considers the goals of individual patients. As current metrics are based on population outcomes, the goal should be to achieve these in most patients, while accepting that some patients may deviate from standard medical advice to account for their unique conditions.

We currently shy away from patient-reported outcome measures (PROMs) because we do not know how to measure these easily and objectively. PROMs are also affected by factors we do not usually pay attention to, including social determinants of health. We need to evolve our use of PROMs as quality metrics and integrate these in patient care.

Excellent work has been initiated by multiple parties to account for the patient’s voice. Examples include the Standardized Outcomes in Nephrology (SONG) initiative, which aims to establish core outcomes in nephrology, and the Patient-Centered Outcomes Research Institute (PCORI), which funds research to support patients and families in making better informed decisions about health care. These initiatives are establishing the foundation upon which meaningful change can be developed.

We are in health care because we want to help patients. Paternalistic care that is designed and dictated by providers is something from the past. To deliver person-centered care, we must engage patients in health care and research, and change our practice and regulations to accommodate shared decisions, as this is the path to our true goal of helping patients experience better life.


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