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Youths with Sick Cell Disease Report Improved Medication Adherence with Community Health Worker Support


This article originally appeared in the Fall/Winter 2018 issue of Columbia Nursing magazine.


Youths with sickle cell disease who received disease management support from a community health worker (CHW) reported greater improvements in medication adherence and healthrelated quality of life (HrQL) domains, especially relating to emotions, worry, and communication, than those who did not receive such support, according to new research from Columbia Nursing. In addition to focusing on barriers to daily hydroxyurea use, the HABIT (Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment) study underscored the importance of improving parentyouth partnerships in disease self-management.

Arlene Smaldone ’03, PhD, professor and assistant dean for scholarship and research, and co-investigators conducted the six-month randomized controlled trial to test the feasibility and acceptability of a CHW intervention. The intervention involved CHW home visits and text messaging designed to improve youths’ hydroxyurea adherence, their quality of life, and their partnership with their parents in managing the disease.


Investigators randomized youth-parent dyads to intervention or control groups. Both groups attended seven monthly clinic visits, during which they received clinical care and educational handouts about sickle cell disease and hydroxyurea therapy. Only intervention dyads received monthly CHW home visits, during which the CHWs and youth-parent dyads discussed critical social issues, including barriers to hydroxyurea use and strategies for overcoming them. CHWs also helped intervention dyads develop text-message language in their native Spanish or English to remind them to take hydroxyurea daily. Texts replaced CHW visits by the study’s fourth month.


Overall, 28 youth-parent dyads––18 intervention and 10 controls, half of whom were Hispanic—participated in the study. Youths’ mean age was 14 years. Compared with controls, intervention youths reported less worry about pain and the need for hospitalization or emergency room visits; less anger about having sickle cell disease; and less difficulty talking to others, including health professionals, about their emotions. They also reported improvement in all disease-specific HrQL scores, such as pain impact, compared with controls, whose scores remained stable or declined.


Sickle cell disease is a painful, inherited disorder that affects some 100,000 Americans, most commonly African Americans and Latinos. Although hydroxyurea reduces hospitalization and enhances quality of life in youths with the disease, it is underused, possibly because, as Smaldone noted, “treatment adherence often deteriorates during adolescence, as youths assume greater responsibility for their self-care.” Thus, parental support is critical as adolescents learn to manage their illness, she stressed.


In the intervention group, youth-parent concordance over disease self-management improved slightly at three months but dissipated by six months, when text-message reminders had replaced CHW support. Nevertheless, Smaldone concluded, “the HABIT intervention is feasible, acceptable to parents and youth, and shows promise in improving psychosocial domains of both generic and disease-specific HrQL, as well as dyad concordance regarding selfmanagement tasks.”

This study was funded by the National Institute of Nursing Research (NINR) at the National Institutes of Health, and appeared in the 2018 edition of The Journal of Pediatrics.