60% Of Physicians Who Treat Sickle Cell Disease Report Burnout

TheBrief**

Sickle cell disease (SCD) is a chronic and potentially life-threatening blood disorder with physical and emotional effects both sudden and unpredictable. Patients and their families require skillful care from a group of physicians specially trained in the management of this condition. Alarming new research, however, finds that 61% of these physicians experience burnout, which has the potential to affect access, quality, and equity of care for the growing number of patients with the disease.

Recent Research**

A new study out this week attempted to get at the underlying reasons for the workforce crisis in sickle cell disease. The results aren’t what you’d hope for – 60% of SCD specialists reported experiencing burnout, significantly higher than the 44% of non-SCD hematology-oncology physicians who reported burnout. Clearly, these systemic and structural problems that affect our highest acuity patients are having the greatest impact on those who have the grit, determination, and resilience necessary to care for patients with SCD.

What’s driving nearly two-thirds of hematologist-oncologists managing patients with sickle cell disease to a breaking point? A new study highlights the profound challenges faced by these specialists and compares them with their colleagues in other areas of hematology and oncology.

Why It Matters**

Burnout among physicians treating patients with sickle cell disease (SCD) has considerable implications for the physicians and their patients. Providing optimal care to individuals with SCD is a challenging job that involves providing episodic acute pain management and chronic organ surveillance and care, as well as addressing patients’ and families’ psychosocial concerns and linking them to primary care and other community and specialty medical resources. When providers are fully engaged and functioning optimally, timely and effective care is provided. When they experience burnout, are overextended, or abandon the specialty, patients experience longer waits for appointments, less coherent transitions of care, and inconsistent pain management, potentially leading to greater severity of complications and increased hospital use.

Workforce Crisis**

There is a workforce crisis among burned-out staff across healthcare but nowhere is this more pronounced than in the suffering SCD workforce. SCD care is of high intensity with both a high level of inpatient and outpatient management of a patient cohort with early mortality and a lack of effective disease-modifying therapies. SCD physicians, compared to all other specialist physicians, are more likely to work in academic medical centers and to hold leadership or administrative positions (89% vs 74%, 36% vs 16%).

SCD physicians have, on average, more years of clinical experience (81% >5 years in practice) and yet only 36% earn $350,000 or more annually (compared to 64% of peer groups). This disparity may put SCD physicians under a lot of cognitive and emotional stress to try to do a great job, and it could drive some of these specialists out of practice.

Health Equity**

Abstract: Articles have begun to note the potential impact of health workforce challenges on health equity. Clinics serving patients with Sickle Cell Disease (SCD) who have limited financial resources are largely comprised of communities of color. As nearly 90% of the US sickle cell population is Black or of African origin, more than 75% of that patient population have limited financial resources. Therefore, the strain in clinics serving patients with SCD is largely felt by communities of color. In addition to potentially worsening health inequities, lack of necessary resources in clinics and clinics that do not foster care that is culturally competent, that develops connections within communities, and forms long-term relationships with patients, also leads health care clinicians to experience burnout. Once clinicians experience burnout, they alter their prescribing habits, change their risk tolerance for pain management and safe opioid stewardship, and decide whether patients and families need new and expensive treatments that require ongoing monitoring.

Healthsystem Level**

Lost clinician capacity has significant downstream effects for the health system. Replacing one doctor or rebuilding an already fragile multidisciplinary SCD program is slow and expensive. Payers and health systems need to understand that there are time-intensive tasks involved in delivering high-quality, comprehensive care for patients with SCD, including care coordination, assessment of social needs, and patient education. Lost clinician capacity can also lead to burnout of other clinicians who are seeing a surge in patients with SCD. Additionally, there are medical students and residents who are observing their overwhelmed mentors who are providing care for patients with SCD. Often, these learners are deterred from entering the fields of hematology, pain medicine, or primary care because of the challenges they observe their mentors facing in delivering quality care for patients with SCD.

Who It Affects**

Patients

Although other medical conditions may require more frequent medical care, none have illness behaviors as unique or as potentially life-threatening as sickle cell disease. Patients with sickle cell disease need consistent access to appropriate medical care and appropriate management of both acute events and chronic complications from this condition from health care providers who are knowledgeable about these issues and can manage the distinctive illness behaviors of patients with sickle cell disease. Infrequent access to such care can lead to poor quality of medical care, complications that could be prevented, inadequate pain management, increased hospitalizations for both acute and chronic problems, and decreased patient and family trust in the medical health care system.

Clinicians

This book is intended for the busy hematologist, emergency room physician, primary care provider, nurse practitioner, physician assistant, pain specialist, and other health care providers who take care of patients and families with sickle cell disease daily. Many non-SCD hematologists have little knowledge or discomfort with the more serious complications of SCD, thereby leaving the majority of clinical responsibility with a very small group of specialists. The question is: How do these specialists maintain a life outside of their demanding work? Fifty-one percent of the SCD physicians in this study reported having time for recreation only once a week. In contrast, fifty-nine percent of the non-SCD physicians reported having time for recreation two or more times per week.

A common source of burnout reported to SCD Meds by respondents was the lack of time to recover from work. This is likely one of many factors that may contribute to the fact that only 47% of respondents strongly agreed with the statement “I feel pride in my work as an SCD physician,” which is 8% below the average for all respondents. There are likely many underlying factors for this observation, including the historic marginalization of their patient population and the lack of institutional support and structural underfunding of many SCD practices.

Healthcare professionals experience moral distress when they perceive that they lack the necessary resources to deliver quality care or are unable to address patients’ medical and social needs. Working long hours, administrative tasks, and fear of inappropriately prescribing opioids can also exacerbate the problem of professional burnout.

Healthsystems And Payers**

In addition to harming patients and families, the lack of stability in the SCD workforce will have negative effects on healthsystems and payers. Healthsystems and clinics that rely on SCD clinicians to deliver quality patient care will suffer unintended consequences, such as increased use of emergency departments and inpatient hospital services for individuals with SCD. These consequences will lead to increased downstream costs for Medicaid and other payers that cover a large percentage of the SCD patient population. Policymakers and professional medical societies that are interested in access to and quality of care for individuals with SCD will see the impact of these factors and will be forced to consider regulatory and payment systems that recognize the complex and costly nature of SCD care.

What Changes**

• Providers will need to expend additional time and resources to coordinate care and deliver more comprehensive outpatient management in order to prevent emergency visits and hospitalizations.
• Payers and health systems must consider reimbursement for multidisciplinary SCD programs to ensure that sustainable programs and a competent workforce are maintained; payment reforms similar to bundled payments, enhanced care management fees, or dedicated funding of clinics may be useful strategies to this end.
• Investment in programs that foster workforce development, including training, mentorship, and loan repayment/incentive programs, is important to recruit and retain the clinicians who will deliver quality healthcare to individuals with SCD.
• Integrating Behavioral Health and Social Work, as well as Community Health Workers, into SCD care teams is critical to tackling the drivers of burnout and improving outcomes for patients.

Practical Implications Are Immediate

Clinics for individuals with SCD must balance the need for timely acute care with the need for ongoing, continuous care between acute episodes. Schedules can be organized to accommodate longer visits and more comprehensive care for patients. Telehealth can be used to maintain continuity of care between in-person acute care visits. Clinicians and care teams can build relationships with community-based organizations to address issues related to housing instability, transportation, and food insecurity, for example. For clinicians on the frontlines providing care to individuals with SCD, explicit organizational support of staff, protected time for clinical work, reasonable patient panels, and access to mental health resources and peer support can help to mitigate the effects of burnout.

• Doctors fall ill and face problems. But then they have to deal with the systems that are intended to care for them.
• Recreation Infrastructure will require Institutional Infrastructure (i.e., staff and administrative systems).
• Policy and Funding: There are models of SCD care that exist and can be replicated such as the $15 million invested by the state of California and the $1.2 million annually that supports Virginia’s adult SCD program.

To begin to build a pipeline, initiatives such as the American Society of Hematology (ASH) Hematology-Focused Fellowship Training Program are needed to prevent a few individuals from becoming overly burdened with the need for guidance.

Policy Changes Matter**

Reimbursement policies do not currently value the critical work that goes into non‑procedural activities like phone calls, multidisciplinary case conferences, and social screening for unmet needs to prevent crises. Policymakers can reduce administrative burden to keep physicians working. Prior authorization requirements for medications could also be streamlined, especially for disease‑modifying therapies. All comprehensive SCD clinics must be in network and fully covered for all services. State and federal workforce incentives need to be established to build a workforce of skilled clinicians ready to practice in these underserved areas.

Trade-Offs**

When making clinical decisions, providers have to weigh different options. SCD management involves some unique trade-offs, particularly in terms of pain control in a highly scrutinized environment. Burnout can impede a provider’s ability to make these complex decisions for their patients, sometimes reverting to more conservative management or making hasty decisions that potentially harm their patients. Developing a structured team approach to managing SCD patients can ease some of the cognitive burden by spreading out the responsibility of patient care, creating protocols, arranging timely specialty consultations, and following up with patients to monitor their condition.

Patient Experience Is Central**

Sufferers and their families with sickle cell disease report that they experience stigma when seeking pain management. This can add another layer of emotional challenge for clinicians who strive to provide excellent care in the absence of effective system supports. Skills for effective communication, strategies for anti-bias practice and development of patient advisory groups can help rebuild trust and create a work environment that is consistent with the organisation’s mission.

Looking Ahead**

Develop innovative strategies to prevent burnout and improve SCD care, such as: 1) creating multidisciplinary SCD centers staffed by a combination of hematologists and primary care physicians as well as mental health and pain management specialists and social workers; 2) making SCD practice economically viable through payment reforms that reward non visit work and care coordination; 3) workforce programs that support the creation of new fellowships and mentorship opportunities for SCD care as well as programs to support physicians practicing in underserved communities. Measuring clinicians’ wellbeing and their quality of practice should become an institutional quality metric and strategies to prevent burnout (e.g., modifying staffing, creating respite programs) need to be rapidly implemented when indicated.

In addition to the time between visits, home care also requires staff. Technology can help identify a medical crisis early on, potentially preventing a hospitalization through telemedicine and remote patient monitoring. Technology can also improve the use of electronic health records to make administration easier, highlight patients who are at high risk and need contact with clinicians on a regular basis, and perform other tasks. However, the full potential of these technologies will not be achieved without someone integrating these new tools into the care processes of home care providers.

Alignment of incentives for all stakeholders is critical to making change happen. Healthsystems need to recognize the value of quality time spent on SCD patients and their families. Payers need to develop reimbursement strategies to support the multidisciplinary teams that manage SCD. Medical educators and training programs need to emphasize management of chronic conditions and cultural competence in patient care. Policymakers must address the root causes of the social determinants of health that drive up clinical workload and risk for individuals with SCD. Clinicians working with individuals with sickle cell disease are at risk of transmission of blood-borne pathogens. To better safeguard clinicians and improve patient care, we can take a few simple steps.

References: https://pubmed.ncbi.nlm.nih.gov/41817318/