Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

Abstract

ickle cell disease (SCD), an inherited chronic medical condition, affects about 100,000 individuals in the United States, a population that is predominantly African American. 1 These individuals experience multiple serious and life-threatening complications, most frequently recurrent vaso-occlusive pain episodes, 2 and they require interactions with multidisciplinary specialists from childhood. Because of advances in treatments, the majority are reaching adulthood; however, there is a dearth of adult health care providers with the training and expertise to manage their complex medical needs. 3 Other concrete barriers to adequate SCD care include insurance and distance to comprehensive SCD centers. 4,5 Social, behavioral, and emotional factors may also contribute to challenges with SCD management. SCD may limit daily functional abilities and lead to diminished overall quality of life. 6,7 Some adolescents and adults may require high doses of opioids, which contributes to health care

Perspectives of individuals with sickle cell disease on barriers to care

“…Individuals with SCD reported that access to an SCD specialist (a provider-level barrier) was a key barrier, consistent with prior studies on barriers to care for individuals with SCD [ 16 , 19 , 20 ]. As a patient perspective, this finding stands out in contrast to a recent study reporting provider perspectives from emergency department physicians that patient behavior is the most important barrier to SCD care [ 21 ].…”

“…Difficulty with transportation was a significant challenge, particularly for participants who lived in a community that did not have a sickle cell specialist. Among prior studies investigating barriers to care, transportation was infrequently mentioned by adolescents with SCD as a barrier to clinic attendance [ 18 ] but was more frequently endorsed as a barrier to care among adolescents and adults with SCD in Northern California [ 20 ], suggesting adolescents rely on parents/caregivers for transportation and lack of reliable transportation is a more common barrier among adults with SCD. Insurance-funded transportation was an essential source of support for many participants, but its use still involved overcoming barriers that were not an issue with private transportation.…”

“…Previous research on barriers to care for individuals with SCD in the US has been conducted from the perspectives of adults with SCD, adolescents with SCD, caregivers of children with SCD, healthcare providers, and stakeholders (e.g., individuals in community-based organizations). These studies focused on barriers to adherence to the treatment regimen [ 15 ], barriers to and interventions for improving treatment [ 16 ], barriers to primary care [ 17 ], barriers to clinic attendance [ 18 ], barriers to care transition [ 19 ], barriers to care in Northern California [ 20 ], challenges and facilitators to caring for individuals with SCD in the ED in North Carolina [ 21 ], and barriers to receiving care in the ED [ 22 ]. Prior studies primarily focused on narrow aspects of care (e.g., barriers to appointment adherence) and were conducted at single sites; further, only one used multiple or mixed methods approaches.…”

Acupuncture for Pain Management in Pediatric Patients with Sickle Cell Disease

“…Pain management during an acute vaso-occlusive episode in a pediatric patient with sickle cell disease (SCD) is challenging to treat and standard-of-care options are limited to opioids, IV fluids, adjunct ketamine infusions, regional anesthesia, and nonsteroidal anti-inflammatory drugs (NSAIDs) [ 1 , 2 , 3 , 4 ]. Acupuncture has long been studied for pain relief, however, a unified theory of its action in Western Medicine has not been accepted [ 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 ]. Moreover, acupuncture for the use of pain management in pediatric patients with SCD during an acute pain episode is a vastly understudied area of medicine [ 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 ].…”

“…Acupuncture has long been studied for pain relief, however, a unified theory of its action in Western Medicine has not been accepted [ 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 ]. Moreover, acupuncture for the use of pain management in pediatric patients with SCD during an acute pain episode is a vastly understudied area of medicine [ 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 ].…”