Aimee W Smith1, Prasad Bodas2, Lisa Sidebotham2, JoEllen Weilnau2, Beth Wildman3. 1. Kent State University, 144 Kent Hall, Kent, OH 44242, USA. Electronic address: smithaim18@ecu.edu. 2. Akron Children's Hospital, 1 Perkins Square, Akron, OH 44308, USA. 3. Kent State University, 144 Kent Hall, Kent, OH 44242, USA.
Abstract
INTRODUCTION: Sickle cell disease (SCD) can shorten lives and may result in severe clinical complications. Hydroxyurea (HU) is inexpensive, widely available, and National Institutes of Health (NIH) recommends HU for SCD. Despite these benefits, utilization of HU is low. Barriers to taking HU include inaccurate perceptions of serious side effects such as hair loss, a significant barrier in the African American community. However, at doses for treating SCD, the incidence of side effects is extremely low. Using a retrospective medical record review, the impact of a revised consent procedure for HU that addressed these barriers was evaluated. METHODS: SCD patients 2-20yo eligible for HU were examined. Patients prescribed HU versus those not prescribed HU were compared one year before and one year after revising consent procedures. RESULTS: Change in clinic practice (including revised consent procedures) resulted in 158% more patients agreeing to HU therapy (p<.001). DISCUSSION: The revised consent procedures are not resource intensive and easy to implement. Future research should address treatment acceptability, intimidation, and cultural sensitivity.
INTRODUCTION:Sickle cell disease (SCD) can shorten lives and may result in severe clinical complications. Hydroxyurea (HU) is inexpensive, widely available, and National Institutes of Health (NIH) recommends HU for SCD. Despite these benefits, utilization of HU is low. Barriers to taking HU include inaccurate perceptions of serious side effects such as hair loss, a significant barrier in the African American community. However, at doses for treating SCD, the incidence of side effects is extremely low. Using a retrospective medical record review, the impact of a revised consent procedure for HU that addressed these barriers was evaluated. METHODS:SCDpatients 2-20yo eligible for HU were examined. Patients prescribed HU versus those not prescribed HU were compared one year before and one year after revising consent procedures. RESULTS: Change in clinic practice (including revised consent procedures) resulted in 158% more patients agreeing to HU therapy (p<.001). DISCUSSION: The revised consent procedures are not resource intensive and easy to implement. Future research should address treatment acceptability, intimidation, and cultural sensitivity.
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Authors: Anna M Hood; Heather Strong; Cara Nwankwo; Yolanda Johnson; James Peugh; Constance A Mara; Lisa M Shook; William B Brinkman; Francis J Real; Melissa D Klein; Rogelle Hackworth; Sherif M Badawy; Alexis A Thompson; Jean L Raphael; Amber M Yates; Kim Smith-Whitley; Allison A King; Cecelia Calhoun; Susan E Creary; Connie M Piccone; Aimee K Hildenbrand; Steven K Reader; Lynne Neumayr; Emily R Meier; Amy E Sobota; Sohail Rana; Maria Britto; Kay L Saving; Marsha Treadwell; Charles T Quinn; Russell E Ware; Lori E Crosby Journal: JMIR Res Protoc Date: 2021-05-21
Authors: Marsha J Treadwell; Lisa Du; Neha Bhasin; Anne M Marsh; Theodore Wun; M A Bender; Trisha E Wong; Nicole Crook; Jong H Chung; Shannon Norman; Nicolas Camilo; Judith Cavazos; Diane Nugent Journal: Front Genet Date: 2022-08-26 Impact factor: 4.772