Patient challenges

Now, more than ever, it’s time to support patients with SCD who face difficulties beyond their disease

Many adults with sickle cell disease (SCD) struggle with employment and the ability to work

Compared with the
national unemployment
rate (2002-2010) of
approximately 4%-10%,
the proportion of adults
with SCD who are
unemployed ranges from


28% - 52%
Compared with the
national unemployment
rate (2002-2010) of
approximately 4%-10%,
the proportion of adults
with SCD who are
unemployed ranges from


28% - 52%
Complications from SCD have an impact on the livelihood of people living with it and their ability to work. For these adults, unemployment adds to the economic burden of managing a chronic lifelong illness.1,2

Increased SCD severity caused by 4 or more vaso-occlusive episodes (VOEs) over a 12-month period has been shown to decrease work attendance and performance. These patients reported missing significantly more work, being less productive, and having more work impairment than those who experienced <4 pain crises. Adults with SCD of 4 or more pain crises also experienced a significant negative impact on social functioning, sleep, and pain.3

Patients with SCD also face implicit racial bias in the healthcare setting

Given that sickle cell is predominantly a disease that affects people of specific races, implicit bias may play a role. People living with SCD should not receive, nor should they expect to receive a lower standard of care than the general population for any reason, including but not limited to their race, age, or gender. However, implicit associations—whether they are unconscious or conscious—can influence treatment decisions, resulting in implicit bias. The first step is to be aware of implicit bias, and then to minimize its impact in the care of sickle cell disease.4

Black Americans, as well as other racial and ethnic minorities that include Hispanic Americans, are known to receive poorer care and are less likely to receive even routine medical care than White Americans. This disparity is associated with greater mortality in Black Americans.5
A systematic review of peer-reviewed US and ex-US studies between March 2003 and March 2013 showed that healthcare professionals exhibit implicit biases to a similar degree as the general population. The table below shows some examples of racial bias and discrimination specifically toward Black Americans, but not specific to SCD.4
Impact of implicit bias
Diagnosis-related impact
A survey of 128 general physicians showed healthcare professionals were less likely to diagnose coronary heart disease with certainty among Black patients than White patients4*
Treatment-related impact
Implicit Association Test (IAT) scores from 287 internal and emergency medicine residents showed perceived implicit stereotypes of Black Americans as less cooperative with medical procedures.6†
At a large urban research university, 86 pediatricians reported implicit bias being associated with treatment recommendations such that, as pro-White bias increased, the likelihood of prescribing narcotic medications to Black patients decreased, but not for White patients4†
Impact on general care
Particularly for Black patients, poor communication and poor ratings of care were associated with clinicians' implicit race bias and race/compliance stereotyping4*
*Based on Assumption Method Biases: Age, Gender, Racial/ethnic and SES.
Based on Implicit Association Test (IAT) scores.
Based on Assumption Method.

Racial discrimination in Black adults with SCD

Both adults and adolescents with SCD have reported feeling stigmatized as drug seeking or drug addicts or having their pain discredited in the healthcare setting. In an 2003 to 2008 analysis of emergency department visits, Black patients with SCD experienced 25% longer wait times to see a physician compared with the general patient sample.7,8

Experiences with discrimination may cause medical mistrust among patients with SCD. Medical mistrust has been linked to less preventative care, poorer disease management, and poor compliance with treatment for a variety of conditions including SCD.9

Many children with SCD often face difficulties at school

Each child with SCD experiences symptoms and complications differently. VOEs associated with SCD, such as acute pain crises, are unpredictable and can be caused by a variety of factors, including changes in air temperature, lower oxygen levels, stress, and infection.10

Children with severe forms of SCD may require daily medications and/or intensive treatments that need to be managed at home or require hospitalization, blood transfusion, and medical appointments. As a result, children with SCD have been found to miss multiple days of school per year.10

Academic progress is further hindered by SCD and SCD-related school absences. Of the 30 adolescents with SCD (ages 12 to 20) who were surveyed with the SCD school performance questionnaire10:

60%

reported that SCD
interfered with their
school performance


40%

reported being
retained at least 1
grade level compared
with 24% nationally

37 %

reported receiving
special educational
services compared
with 13% nationally

Racial discrimination in Black children with SCD

Black children with SCD have also experienced racial discrimination. Children with SCD reporting high pain intensity, 88% of whom were Black, experienced greater delays in receiving analgesic medicine than children with long-bone fracture, 15% of whom were Black.11

Ask about your patients’ emotional mindset as well as their social and educational situations—understanding these factors can lead to optimal SCD care

Patients with SCD face difficulties beyond their disease and it is as important to identify and help address these difficulties as it is to identify and address their physical symptoms. Many patients with SCD need psychosocial support that may require physicians to coordinate with mental and social services.
Jennifer, living with SCD

Your patient is not only your patient. Your patient is a regular person with feelings just like you. Doctors should treat their patients with sickle cell disease how they would like to be treated.”

Jennifer, living with SCD

Working with patients to understand if they have experienced struggles beyond their disease can build provider-patient trust Working with patients to understand if they have experienced struggles beyond their disease can build provider-patient trust

Take a look at the SCD Patient Brochure

This educational brochure—made by patients and made for
patients—can help aid your discussion about SCD
This educational brochure—
made by patients and made
for patients—can help aid
your discussion about SCD

References

1. Sanger M, Jordan L, Pruthi S, et al. Cognitive deficits are associated with unemployment in adults with sickle cell anemia. J Clin Exp Neuropsychol. 2016;38(6):661-671. 2. U.S. Bureau of Labor Statistics. Civilian unemployment rate. 2002-2010. Accessed October 21, 2020. https://www.bls.gov/charts/employment-situation/civilian-unemployment-rate.htm 3. Rizio AA, Bhor M, Lin X, et al. The relationship between frequency and severity of vaso‑occlusive crises and health‑related quality of life and work productivity in adults with sickle cell disease. Qual Life Res. 2020; 29(6):1533-1547. 4. FitzGerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics. 2017;18(1):19. 5. Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Smedley BD, Stith AY, Nelson AR, eds. National Academic Press; 2003. 6. Green AR, Carney DR, Pallin DJ, et al. Implicit bias among physicians and its prediction of thrombolysis decisions for black and white patients. J Gen Intern Med. 2007;22(9):1231-1238. 7. Bulgin D, Tanabe P, Jenerette C. Stigma of sickle cell disease: a systematic review. Issues Ment Health Nurs. 2018;39(8):675-686. 8. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. The impact of race and disease on sickle cell patient wait times in the emergency department. Am J Emerg Med. 2013;31(4):651-656. 9. Alsan M. Wanamaker M. Tuskegee and the health of black men. Q J Econ. 2018;133(1):407-455. doi: 10.1093/qje/qjx029 10. Crosby LE, Joffe NE, Irwin MK, et al. School performance and disease interference in adolescents with sickle cell disease. Phys Disabil. 2015;34(1):14-30. 11. Wakefield EO, Pantaleao A, Popp JM, et al. Describing perceived racial bias among youth with sickle cell disease. J Pediatr Psychol. 2018;43(7):779-788.

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