Community Health Workers Seen as Way to Improve Care of Sickle Cell Disease Patients

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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With interest growing in the potential of community health workers to aid in the management and care of people with sickle cell disease (SCD), researchers investigated the possibilities, making suggestions for how best to use, train and evaluate these workers.

Researchers recently investigated and summarized the potential of community health workers in the management and care of people with Sickle Cell Disease (SCD), highlighting evaluation and policy opportunities that could improve care and clinical outcomes in patients affected by the disease.

Community health workers assist patients with a variety of diseases, acting to provide social support, counseling, and guidance through the health care system, and evidence suggests they would be effecting in helping SCD patients, the researchers write in their study, “Community Health Workers as Support for Sickle Cell Care,” published in the American Journal of Preventive Medicine.

Improvements in care have greatly increased the lifespan of people with SCD, a hereditary disease that starts in childhood. As such, it still carries high rates of morbidity, healthcare utilization, and medical and other costs.

Community health worker interventions have been shown to improve patient-centered outcomes in underserved populations, addressing their needs by working as educators, supporters and advocates. These interventions have not, however, been evaluated in the context of SCD, a disease in need for alternative interventions for improvement of short- and long-term outcomes and better quality of life.

The authors suggest that people with SCD would likely benefit from community health worker case management, social support, and health system navigation (these health workers are not clinicians). They propose a series of implementation strategies to test their effectiveness on SCD management in a variety of settings, and suggest seven core roles for them: cultural mediation, informal counseling and social support, health education, individual and community advocacy, support with medical and social services needs, direct social and supportive services, and building individual and community support.

Although projects examining the impact of community health worker involvement are only getting underway, the researchers report a high rate of patient acceptance, an early indicator that such interventions can be feasible. Moreover, the SCD Association of America is planning to officially endorse the use of community health worker with SCD patients.

Finally, researchers propose a series of steps to increase their effectiveness and evaluate their impact — namely, developing standard curricula for training these workers in SCD, creating a registry of SCD community health workers in local/regional demonstration programs, and organizing SCD Association of America certification and registration their continued training, among others. “These advances should be studied as implementation and evaluation for public health impact, and to better define metrics for successful [community health worker]-based care,” the researchers conclude.