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Agreement between youth and caregiver report of pain and functioning in pediatric sickle cell disease: PedsQL sickle cell disease module

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 es ...

Article GUID: 37878652


A multilevel mHealth intervention boosts adherence to hydroxyurea in individuals with sickle cell disease

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; ...

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 patie ...

Article GUID: 37738155


Provider prescription of hydroxyurea in youth and adults with sickle cell disease: A review of prescription barriers and facilitators

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. Howe ...

Article GUID: 37691131


A polygenic score for acute vaso-occlusive pain in pediatric sickle cell disease

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; Cha ...

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 sequenc ...

Article GUID: 34283174


Empirically Derived Profiles of Health-Related Quality of Life in Youth and Young Adults with Sickle Cell Disease.

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 ...

Article GUID: 33249456


Pain in Youth with Sickle Cell Disease: A Report from the Sickle Cell Clinical Research and Intervention Program.

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 c ...

Article GUID: 33093339


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