Please do not forget about us: The need for patient-centered care for people with kidney disease and are at high risk for poor COVID-19 outcomes

To the Editor,

Almost 40% of Americans (37.6%) are at high risk for significant complications from COVID-19.¹ In particular people with end-stage renal disease,² including those who have had kidney transplants,³ are at high risk for poor COVID-19 outcomes. As a kidney transplant recipient and a family member of a kidney disease patient we implore the transplant community not to forget about the need for patient-centered care for their transplanted patients at this time.

Research on the mental health impact of this pandemic suggests that COVID-19 may increase depression and anxiety.⁴ People who are at high risk may experience stress and poor coping as a result of their increased susceptibility to poor COVID-19 outcomes. COVID-19 reminds us of how our lives are much different than that of healthy individuals. We also may be experiencing grief as we lose our “normal” life as well as friends.

One aspect that could be contributing to poor mental health outcomes for people who are at high risk is the communication (or lack thereof) received from transplant and other medical providers during this time. Using a patient-centered care approach can help patients who are at high risk have the best outcomes. This approach includes attention to mental as well as physical health, and information that is transparent and quickly delivered.⁵

We have experienced, and know others who have also experienced, a lack of communication from medical providers about COVID-19 to patients who are at high risk for poor outcomes. With all of the “unknowns” that are associated with COVID-19 and the daily stresses of the pandemic, this is a frightening time to not hear anything from our medical care teams about what this virus may mean for us. At the same time, people who are at high risk for poor COVID-19 outcomes are taking extreme measures to keep them and their families safe. This includes forgoing medical visits or laboratory testing. Normally, transplant and medical facilities are our safe space, but now they are very scary places for people who are at high risk.

People who are at high risk for poor COVID-19 outcomes are terrified and need proactive communication from their care providers during this time. We need to get information about what we should be doing to help minimize our COVID-19 risks that is unique to our medical needs. What we need is tailored information for our medical conditions, an acknowledgement of the fear and grief we have at this time, emotional support, and to feel safe getting routine care ( Table 1). Simply telling patients to wear masks and socially distance will not be enough to quell fears of high-risk patients. Patients should receive information that is specific to their age, job, family life, living situation, illness, and treatment regimes. Patient-centered care should remain a priority even in these unprecedented times.

TABLE 1.

Suggestions for patient-centered care for people who are at highrisk for poor COVID-19 outcomes

Organizational mission and values aligned with patient goals Review your organization’s mission and values and consider how they should be reflected in current practices with people who are at high risk. Get feedback from patients and families to align organizational mission and values with patient goals in the context of COVID−19.

Care is collaborative, coordinated, and accessible Review your organization’s response to COVID−19, solicit feedback from patients and families on your practices. Transplant centers can leverage their interdisciplinary care teams to work with patients and families and create patient-centered COVID−19 responses. Determine who will be communicating with patients and families about COVID−19 ideally, this should be a team member that patients know and trust. Make sure COVID−19 responses are quickly disseminated and accessible to all patients. Given patient preference, health literacy, and technology access, this may be done by telephone, text messaging, video conferencing by phone or computer, letter, or other methods.

Physical comfort and emotional well-being are top priorities Communicate about the safety protocols you have in place for necessary and routine medical visits. What is your office and building doing to make sure people who come in for visits, have procedures or get laboratory tests, feel safe? How did you change your waiting room to social distance patients and improve the sanitation of the physical environment? Do patients have to wait in a waiting room or can they wait in their cars or outside until their appointment? Are your employees tested for COVID−19? What happens if employees test positive? What steps are in place to make sure your employees and other patients do not infect visiting patients? Are there home-based services or virtual ways of providing care so that patients who are at high risk do not need to come into a medical office? Can blood work be taken in a patient’s home or in a vehicle outside your facility? Use telemedicine as much as possible, especially by phone for patients who do not have internet or technology access. Ask about your patients and their families emotional well-being as a result of COVID−19. Recognize that it is a terrifying time and it is normal to feel stressed or sad or anxious. If your team includes a mental health professional, let them check in on patients’ emotional health and provide supportive counseling. Many health settings have social workers—collaborate with them to attend to these mental health needs. If you do not have a mental health professional on your team, provide your high-risk patients with a list of local mental health resources who are providing telehealth services and accept their insurance or having sliding scale payments. Provide support groups for your patients or refer patients to online supportive services for people with their health conditions. At a time when people who are at high risk are staying home, they may not see people outside their home for months. Providing forums for your patients to talk and get support with other people going through similar difficulties can be helpful.

Patient and family viewpoints are respected and valued, patient and family are always included in decisions, family is welcome in the care settings Do not forget about your patients’ families. Ask how they are doing and provide support and referrals for family members.

Full transparency and fast delivery of information Identify your patients who are high risk for poor COVID−19 outcomes Reach out to all of your high-risk patients and check in on them Provide your high-risk patients with information about COVID−19 that is uniquely relevant to them and their illness(es) and treatment regimes. Professional transplant and other medical societies can review and create patient-centered information for health care organizations to use.

Suggestions are categorized by the NEJM Catalyst’s framework components for patient-centered care.⁵

Prior to COVID-19, there was an encouraging and dramatic increase in the delivery of patient-centered care in many health systems. Providers are encouraged to revisit these principles to help patients who are at high risk for poor COVID-19 outcomes feel safe and supported at this time.