Author(s): Alberts NM; Gilbert A; Kang G; Okhomina VI; Flynn JS; Hodges J; Hankins JS; Klosky JL;

Pain is a primary symptom of sickle cell disease (SCD) and is often severe and chronic. To treat SCD-related pain, proper assessment of SCD pain among youth, including the degree of concordance or agreement between youth and caregiver reports of pain, is essential but has not yet been adequately evaluated. In this study, 525 youth with SCD and their paren ...

Article GUID: 37878652

Author(s): Hankins JS; Brambilla D; Potter MB; Kutlar A; Gibson RW; King AA; Baumann AA; Melvin CL; Gordeuk VR; Hsu LL; Nwosu C; Porter JS; Alberts NM; Badawy SM; Simon J; Glassberg J; Lottenberg R; DiMartino L; Jacobs S; Fernandez ME; Bosworth H; ...

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-randomi ...

Article GUID: 37738155

Author(s): Pizzo A; Porter JS; Carroll Y; Burcheri A; Smeltzer MP; Beestrum M; Nwosu C; Badawy SM; Hankins JS; Klesges LM; Alberts NM;

Sickle cell disease (SCD) is an inherited red blood cell disorder associated with frequent painful events and organ damage. Hydroxyurea (HU) is the recommended evidence-based treatment of SCD. However, among patients eligible for HU, prescription rates are low. Utilizing a scoping review approach ...

Article GUID: 37691131

Author(s): Rampersaud E; Kang G; Palmer LE; Rashkin SR; Wang S; Bi W; Alberts NM; Anghelescu D; Barton M; Birch K; Boulos N; Brandow AM; Brooke RJ; Chang TC; Chen W; Cheng Y; Ding J; Easton J; Hodges JR; Kanne CK; Levy S; Mulder H; Patel AP; Puri L ...

Individuals with monogenic disorders can experience variable phenotypes that are influenced by genetic variation. To investigate this in sickle cell disease (SCD), we performed whole-genome sequencing (WGS) of 722 individuals with hemoglobin HbSS or HbSß0-thalassemia from Baylor College of Medici ...

Article GUID: 34283174

Author(s): Keenan ME, Loew M, Berlin KS, Hodges J, Alberts NM, Hankins JS, Porter JS

OBJECTIVE: Determining how the health-related quality of life (HRQOL) is impacted by living with Sickle Cell Disease (SCD) can inform psychosocial interventions. The purpose of the present study is to determine if demographic and treatment variables predict membership into empirically derived subgroups of HRQOL among youth and young adults with SCD. METHO ...

Article GUID: 33249456

Author(s): Alberts NM, Kang G, Li C, Richardson PA, Hodges J, Hankins JS, Klosky JL

OBJECTIVES: Pain is prevalent among youth with sickle cell disease (SCD). However, previous research has been limited by small sample sizes, and lacked examinations of developmental differences in pain - which are critical to minimizing the development of chronic pain as youth transition into adulthood. The primary aim of the current study was to compare ...

Article GUID: 33093339