Randomized feasibility trial to improve hydroxyurea adherence in youth ages 10-18 years through community health workers: The HABIT study.

INTRODUCTION: The main therapeutic intervention for sickle cell disease (SCD) is hydroxyurea (HU). The effect of HU is largely through dose-dependent induction of fetal hemoglobin (HbF). Poor HU adherence is common among adolescents. METHODS: Our 6-month, two-site pilot intervention trial, "HABIT," was led by culturally aligned community health workers (CHWs). CHWs performed support primarily through home visits, augmented by tailored text message reminders. Dyads of youth with SCD ages 10-18 years and a parent were enrolled. A customized HbF biomarker, the percentage decrease from each patients' highest historical HU-induced HbF, "Personal best," was used to qualify for enrollment and assess HU adherence. Two primary outcomes were as follows: (1) intervention feasibility and acceptability and (2) HU adherence measured in three ways: monthly percentage improvement toward HbF Personal best, proportion of days covered (PDC) by HU, and self-report. RESULTS: Twenty-eight dyads were enrolled, of which 89% were retained. Feasibility and acceptability were excellent. Controlling for group assignment and month of intervention, the intervention group improved percentage decrease from Personal best by 2.3% per month during months 0-4 (P = 0.30), with similar improvement in adherence demonstrated using pharmacy records. Self-reported adherence did not correlate. Dyads viewed CHWs as supportive for learning about SCD and HU, living with SCD and making progress in coordinated self-management responsibility to support a daily HU habit. Most parents and youth appreciated text message HU reminders. CONCLUSIONS: The HABIT pilot intervention demonstrated feasibility and acceptability with promising effect toward improved medication adherence. Testing in a larger multisite intervention trial is warranted.

Building a consensus on community health workers' scope of practice: lessons from New York.

OBJECTIVES: We evaluated efforts in New York to build a consensus between community health workers (CHWs) and employers on CHWs' scope of practice, training standards, and certification procedures. METHODS: We conducted multiple-choice surveys in 2008 and 2010 with 226 CHWs and 44 employers. We compared CHWs' and employers' recommendations regarding 28 scope of practice elements. The participatory ranking method was used to identify consensus scope of practice recommendations. RESULTS: There was consensus on 5 scope of practice elements: outreach and community organizing, case management and care coordination, home visits, health education and coaching, and system navigation. For each element, 3 to 4 essential skills were identified, giving a total of 27 skills. These included all skills recommended in national CHW studies, along with 3 unique to New York: computer skills, participatory research methods, and time management. CONCLUSIONS: CHWs and employers in New York were in consensus on CHWs' scope of practice on virtually all of the detailed core competency skills. The CHW scope of practice recommendations of these groups can help other states refine their scope of practice elements.

Community health worker integration into the health care team accomplishes the triple aim in a patient-centered medical home: a Bronx tale.

Community health workers are ideally suited to the care coordination niche within the patient-centered medical home (PCMH) team, but there are few case studies detailing how to accomplish this integration. This qualitative study documents how community health workers (CHWs) were integrated into a PCMH in South Bronx, New York. Results show that integration was linked to clear definition of their care coordination role within the care team, meticulous recruitment, training and supervision by a senior CHW, shared leadership of the care management team, and documented value for money. By helping the team understand patients' backgrounds, constraints, and preferences, they helped everyone genuinely focus on the patient.