Browsing by Author "Hsu, Lewis L"

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    ItemOpen Access
    A multilevel mHealth intervention boosts adherence to hydroxyurea in individuals with sickle cell disease.
    (Blood advances, 2023-09) Hankins, Jane S; Brambilla, Donald; Potter, Michael B; Kutlar, Abdullah; Gibson, Robert; King, Allison A; Baumann, Ana A; Melvin, Cathy; Gordeuk, Victor R; Hsu, Lewis L; Nwosu, Chinonyelum; Porter, Jerlym S; Alberts, Nicole M; Badawy, Sherif M; Simon, Jena; Glassberg, Jeffrey A; Lottenberg, Richard; DiMartino, Lisa; Jacobs, Sara; Fernandez, Maria E; Bosworth, Hayden B; Klesges, Lisa M; Shah, Nirmish
    Hydroxyurea reduces sickle cell disease (SCD) complications, but medication adherence is low. We tested two mobile health (mHealth) interventions targeting determinants of low adherence among patients (InCharge Health) and low prescribing among providers (HU Toolbox) in a multi-center non-randomized trial of individuals with SCD ages 15-45. We compared the percentage of days covered (PDC), labs, healthcare utilization, and self-reported pain over 24 weeks of intervention and 12 weeks post-study with a 24-week pre-intervention interval. We enrolled 293 patients (51% male; median age 27.5 years, 86.8% HbSS/HbSβ0-thalassemia). The mean change in PDC among 235 evaluable subjects increased (39.7% to 56.0%; p<0.001) and sustained (39.7% to 51.4%, p<0.001). Mean HbF increased (10.95% to 12.78%; p=0.03). Self-reported pain frequency fell (3.54 to 3.35 events/year; p=0.041). InCharge Health was used >or=1 day by 199 of 235 participants (84.7% implementation; median usage: 17% study days; IQR: 4.8-45.8%). For individuals with >or=1 baseline admission for pain, admissions per 24 weeks declined from baseline through 24 weeks (1.97 to 1.48 events/patient, p=0.0045) and weeks 25-36 (1.25 events/patient, p=0.0015). PDC increased with app use(p<0.001), with the greatest effect in those with private insurance (p=0.0078), in older subjects (p=0.033), and those with lower pain interference (p=0.0012). Of the 89 providers (49 hematologists, 36 advanced care providers, four unreported), only 11.2% used HU Toolbox >or=1/month on average. This use did not affect change in PDC. Tailoring mHealth solutions to address barriers to hydroxyurea adherence has the potential to improve adherence and provide clinical benefits. A definitive randomized study is warranted.
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    ItemOpen Access
    What does it mean to be affiliated with care?: Delphi consensus on the definition of "unaffiliation" and "specialist" in sickle cell disease.
    (PloS one, 2022-01) Lamont, Andrea E; Hsu, Lewis L; Jacobs, Sara; Gibson, Robert; Treadwell, Marsha; Chen, Yumei; Lottenberg, Richard; Axelrod, Kathleen; Varughese, Taniya; Melvin, Cathy; Smith, Sharon; Chukwudozie, Ifeanyi Beverly; Kanter, Julie; Sickle Cell Disease Implementation Consortium
    Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a "SCD expert provider". In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an "unaffiliated patient" with SCD and to define an "SCD specialist," as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is "someone who has not been seen by a sickle cell specialist in at least a year." A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having "knowledge" means: being knowledgeable of the 2014 NIH Guidelines, "Evidence-Based Management of SCD", trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years." The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care.