Social Determinants of Health Shape Pain Outcomes in Sickle Cell Disease

A new scoping review explored the interaction of social determinants of health (SDOH) on pain outcomes in patients with sickle cell disease (SCD), to underline nursing practices that could improve management strategies in clinical care.¹

Results from this analysis demonstrated patient factors, including socioeconomic status, social support, and inequity-related barriers in SCD-related care, significantly influenced the pain experience of this patient population with SCD.

“The key findings highlight the complex interplay between socioeconomic, psychological, and biological factors in pain experiences among individuals with SCD,” wrote the investigative team, led by Juanita E. Darby, MSN, RN, college of nursing, University of Illinois Chicago. “They underscore the need for an integrated, holistic approach to nursing care that transcends the conventional biomedical model.”

Nearly 100,000 people in the United States are affected by SCD, a hereditary blood disorder that affects up to 300,000 newborns each year globally.² Pain is a lifelong symptom of SCD, with more than half of adults experiencing frequent painful episodes—as the frequency of episodes increases, a subsequent rise in mortality is also experienced.

As these pain episodes, including vaso-occlusive crises (VOCs), can be both acute and chronic, patients with SCD are frequently hospitalized and experience a reduced quality of life, compared with the general population. Genetic factors play a notable part in the incidence and severity of SCD. Still, inequities in related pain outcomes, including severity and impact, are presumed to involve factors outside of genetics, such as SDOH.

The Centers for Disease Control and Prevention (CDC) defines SDOH as non-medical factors influencing health outcomes, including where a person is born, grows, and lives, and their access to healthcare, socioeconomic status, and education.³ The national Healthy People 2030 program established 5 SDOH domains, including emotional stability, education access and quality, health care access and quality, neighborhood and built environment, and social and community context.⁴

The current scoping review used these 5 domains to explore the wide range of social factors that influence SCD-related pain.¹ Two investigators searched for relevant articles in the PubMed/MEDLINE, CINAHL, and Embase databases. Studies were required to be in English, conducted in the US, evaluate pain outcomes, include SDOH factors, and date of publication within 10 years to November 2023.

Of the initial search (n = 425), 8 were included in the scoping review, including 7,992 individuals with SCD. Individuals identifying as Black or African American comprised 93.3% of the population and 57.1% were women or girls.

Overall, the investigative team identified 3 primary SDOH themes affecting pain in SCD, including education and employment, social and emotional functioning, and healthcare access.

Education and employment affected access to and understanding of healthcare, notably influenced by an individual’s health literacy, or the ability to understand information and instructions about healthcare. This review showed unemployment was linked to more frequent pain episodes in people with SCD, suggesting the impact of economic stability on pain management for both SCD-related symptom relief and overall quality of life.

Social and emotional functioning were also emphasized as notable in pain management related to SCD. Poor social support and functioning were linked with higher pain frequency and severity, with mental health also a factor in pain management and overall quality of life. Individuals with strong social support networks exhibited better emotional coping strategies, leading to lower pain levels.

Healthcare access and necessary treatment were affected by the COVID-19 pandemic, particularly in Black adults with SCD. Isolation and reduced social support exacerbated pain outcomes and led to further barriers to care for a population already affected by structural and institutional factors. Overall, Darby and colleagues found that perceived barriers to healthcare, including stigma and inequity, significantly impacted the pain experiences of people with SCD.

“Meaningful findings from this scoping review include the need to mitigate disease-related stigma to improve care utilization, improve health literacy based on educational attainment, and thus improve understanding of healthcare information to achieve effective outcomes and emphasize the value of ensuring social support for enhancing the quality of life,” they wrote.

References

1. _{Darby JE, Akpotu IC, Wi D, Ahmed S, Doorenbos AZ, Lofton S. A Scoping Review of Social Determinants of Health and Pain Outcomes in Sickle Cell Disease. Pain Manag Nurs. Published online October 5, 2024. doi:10.1016/j.pmn.2024.09.002}
2. _{Khan H, Krull M, Hankins JS, Wang WC, Porter JS. Sickle cell disease and social determinants of health: A scoping review. Pediatr Blood Cancer. 2023;70(2):e30089. doi:10.1002/pbc.30089}
3. _{Centers for Disease Control and Prevention. (2024). Social determinants of health (SDOH). https://www.cdc.gov/about/priorities/why-is-addressing-sdoh-important.html?CDC_AAref_Val=https://www.cdc.gov/about/sdoh/index.html}
4. _{Healthy People 2030. (n.d.). Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services. Social determinants of health. https://health.gov/healthypeople/priority-areas/social-determinants-health}