An Updated Equitable Model of Readiness for Transition to Adult Care

The dynamic process of transitioning from pediatric to adult health care for people with sickle cell disease (SCD) is complicated by challenges that lie at the intersectionality of medical, social, economic, and environmental factors. Sickle cell disease is a biologically based inherited blood disorder that can be traced to geographic origins. It is not race limited, yet it is unquestionably associated with racism, bias, and inequity. Systems-based inequities in drug development, discordant allocation of resources, access to care, treatment of pain, and quality of care contribute to poor health care outcomes for people living with SCD. Collectively, these complex drivers of disparities, many of which originate from systems of power and have considerable overlap with the social drivers of health, impact quality of life for those with SCD throughout the life course.Thanks to advancements in science over the last half century, including the implementation of universal newborn screening, prophylactic penicillin, vaccinations, and hydroxyurea, the early mortality once seen in SCD has been dramatically reduced, at least in developed countries. 1 The average life expectancy for people with SCD in the US now extends into the fifth decade of life and most patients will now spend more time in adulthood than in childhood. 2 As such, the need for adult health care professionals with comprehensive expertise in caring for people living with SCD is greater than ever, yet still insufficient. Antecedent to the actual transfer of care of a pediatric patient to an adult professional, pediatricians are tasked with assessing, preparing, and educating patients about the process of health care transition and can be guided in these efforts by several existing models designed to structure the process.

Stepping Systematically Forward Toward Health Equity in Sickle Cell Disease

Marsh,

Treadwell

2024

The Physician’s Calling and Science Promote Health Equity and Outcomes

Steinbach

2024

To the Editor The article by Prussien and colleagues 1 presents an updated Social-Ecological Model of Adolescent and Young Adult Readiness for Transition to Promote Health Equity (SMART-E) that challenges the physician to address a wide range of broadly defined effectors of health, well-being, and readiness to transition from pediatric to adult care and the spectrum of disparities that influence health equity and lifelong health outcomes. The article and associated Editorial 2 raise profound questions at the heart of the physician's calling and the practice of medicine and science.Most physicians have read Hamlet or similar works and have developed the commitment to respond to the "slings and arrows of outrageous fortune" to which humans are subject. As physicians, they experience these disparities in real time. Response to the human condition with compassion, diagnosis, and treatment of the individual patient is the physician's calling. But the article, which includes feedback from interviews with 20 patients, offers a diverging path. The physician is directed to consider how "practitioner readiness factors might be impacting patient success and health equity" and to target "institutional and interpersonal drivers of disparities, such as limited practitioner cultural humility and implicit bias." Physicians are challenged to divert their focus from the patient to the ills of society and into the depths of their own subconscious. No, the physician must not become a Hamlet, futilely battling the "sea of troubles." Advances in precision medicine demonstrate that awareness, questioning, and compassion are at the origin, but are not the end point of medical care.Next comes the question as to whether physicians and scientists promote equity. The reply begins by saying thank you to the countless health care professionals and scientists who serve to advance humanity. Thank you for medications, vaccines, gene editing treatment of sickle cell disease, instant access to patient records, and instant sharing of knowledge. We now have the tools to provide precision care and continuity of care. Medicine and science do promote equity, 3 but the contributions of a wide range of professionals are needed to bridge the remaining gaps in the delivery of optimal treatment modalities to all patients. 4 A remaining concern is the perceived encroachment of ideology into medicine and science. The view of the physician through the lens of intersectionality, racism, systems of power, and implicit bias is disheartening and counterproductive. This concern has been critically and comprehensively evaluated by a group of scientists who advocate for adherence to scientific methodology as the path forward to advance equity, 3 resolve barriers to care, and uphold the physician's calling.

The Physician’s Calling and Science Promote Health Equity and Outcomes—Reply

Prussien,

Crosby,

Schwartz

2024

Self Cite

COMMENT & RESPONSEIn Reply Our study of adolescents and young adults with sickle cell disease (SCD), caregivers, and clinicians provides initial validation of the Social-Ecological Model of Adolescents and Young Adults Readiness for Transition to Promote Health Equity (SMART-E). 1 This work builds on the extant widely used and validated SMART framework, 2 and it joins the rigorous scientific literature illustrating how systems of power can influence the behaviors and beliefs of health care clinicians, which can have downstream effects on patient health and well-being. 3 We agree with the letter writer regarding the incredible advances led by scientists and physicians to develop disease-modifying therapies (DMTs) in SCD. Prior to July 2017, there was only 1 medication approved by the US Food and Drug Administration; to date, there are 4. However, health equity cannot be achieved solely through biomedical discoveries. Indeed, even a study referenced in the letter demonstrates that despite the increased availability of DMTs for SCD, only 1 in 4 individuals with SCD are using any DMT. 4 Further, the National Academies of Sciences, Engineering, and Medicine report, "Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action," 5 written by leading scientists and physicians in SCD, recognizes the role racism within the health care system has played in delaying the development of DMTs for SCD. This report, alongside national practice guidelines, has elucidated the clinician's responsibility in the recognition and management of socioecological factors, either through direct screening or by facilitating referrals to psychosocial and community resources. This is precisely what SMART-E describes within the context of the transition to adult-oriented health care. 1 In alignment with this, the National Institutes of Health, the American Society of Hematology, and JAMA Pediatrics have expressed a commitment to inclusion and health equity, urging scientists and physicians to take active steps to reduce bias in their science and patient care. The JAMA Network has directly stated that "the JAMA Network journals can and must do better and advance toward inclusion and antiracism in all journal-related activities," and "JAMA Health Forum issued calls for manuscripts on prevention and effects of systemic racism on health." 6 While clinicians represent just 1 aspect of the multifaceted structural and interpersonal factors influencing patient outcomes, understanding how clinicians can mitigate disparities merits exploration and intervention to improve patient outcomes. "The physician's calling" is to deliver the best possible care to their patient, and this entails a humble assessment of institutional and personal biases that may influence behaviors, such as DMTprescribing practices and communication with patients and families, to ensure they are not contributing to health disparities and impeding progress toward achieving health equity.