Barriers to Care for Persons With Sickle Cell Disease

Abstract

As a constant member of the health care team, the case manager may be the only health care team member who has a broad knowledge of the patient's experience of acute and chronic pain, usual state of health, social behavioral health needs, and how these factors may affect both inpatient and outpatient health care use and health outcomes. This article explores the barriers to care and suggests specific interventions within the role of the case manager that can improve care delivered and ultimately contribute to improved patient outcomes. Specifically, these interventions can improve communication among members of the health care team. Case manager interventions can guide coordination, prevent hospital readmissions, reduce health care utilization, and contribute to overall improved patient quality of life and health outcomes.

Why does your pain never get better? Stigma and coping mechanism in people with sickle cell disease

“…In particular, men also feel pressured by friends and even subject themselves to conditions that harm their health and well-being to be accepted and reaffirm their masculinity (18) . Thus, the person who suffers stigma because of some disease and its implications may have difficulty relating not only with family but also with friends, neighbors, co-workers, and people from their more distant social environment (1) . Therefore, stigma in social life is related to interpersonal violence belonging to the public sphere and permeating social relationships.…”

“…Throughout life, pain may increase in frequency and intensity. Chronic complications of SCD, such as necrosis of bone extremities and leg ulcers, also produce painful events (1)(2)(3) . The pain crisis is the most common cause for emergency department admission, and its main complaints are pain, almost always generalized, but which can also be chest, head, abdominal, lower limbs, and leg ulcers (2)(3) .…”

“…The pain crisis is the most common cause for emergency department admission, and its main complaints are pain, almost always generalized, but which can also be chest, head, abdominal, lower limbs, and leg ulcers (2)(3) . The pain can be described as persistent, sharp, radiating, burning, tingling, electric shock, or numbness, among other types (1) .…”

“…In painful crises, for instance, situations of stigma associated with the complications of chronic illness can result in barriers in the care of the sick person and promote passivity and invisibility. All this contributes to the suffering not detected by health professionals, constituting an institutional discrimination that favors the delay in diagnosis and the non-inclusion of the patient in comprehensive care programs (1) .…”

The State of Sickle Cell Disease Care in the United States: How Can Emergency Medicine Contribute?

“… 3 Complications from SCD, such as pain crises, acute chest syndrome, sepsis, and strokes, often occur acutely, requiring rapid evaluation and treatment. Furthermore, there is a national shortage of SCD-trained hematologists 6 , 7 , 8 and primary care providers for adults in the United States, resulting in poor implementation and coordination of chronic care recommendations. This cycle contributes to decreased access and quality of care for individuals living with SCD, particularly adults, and often necessitates the use of EDs as safety-net facilities.…”