Mortality rates for young adults with sickle cell disease (SCD) are alarming ranging from 6 to 20 percent within 10 years of transitioning to the adult healthcare system 21-22.
The Specific Aims of this K07 award are to: (1a) design, optimize, and pilot a self-management intervention for providers (i.e. evidence-based care strategies including motivational interviewing, behavioral change counseling, etc.) that will enhance patient interactions, education and motivation;(1b) design, optimize and pilot a chronic disease self-management intervention for SCD patients age 16-24 (critical ages when patients are transitioning or newly transitioned to adult care) to improve health outcomes (e.g. treatment adherence, pain interference, fatigue, etc.);and (2) to design, refine, and launch an SCD-specific patient-parent portal that integrates with the current electronic health record, MyChart portion of EPIC, and facilitates patient-provider and provider-provider coordination, and 3) prepare the Candidate to be a leader in SCD health services and implementation research. The Candidate's programmatic line of research is in innovation in chronic disease care including transforming the healthcare delivery system for patients with SCD. The candidates'immediate career goal is to establish herself as an independent investigator developing and piloting clinical support tools (i.e. patient- provider self-management interventions and a web-based patient/parent portal) to aid patients with SCD in the transition to the adult healthcare system. The Career Development Plan includes in depth mentorship, formal coursework, and seminars in leadership in 4 focus areas: 1) knowledge of clinical epidemiology to improve understanding of clinical factors related to increased morbidity in SCD;2) health services and implementation research skills;3) advanced methods for research methods and biostatistics;and 4) training in the responsible conduct of research. Cincinnati Children's provides an ideal setting for this award because of the strong institutional support for health services and outcomes research, nationally recognized Comprehensive Sickle Cell, Clinical Effectiveness and Health Policy, and Treatment Adherence and Self-Management Centers, advanced electronic health information systems, and a commitment of the Institution to """"""""change the outcomes"""""""" for SCD patients transitioning to adult care.
This study meets the NHLBI public health goals of promoting treatment of heart, lung, and blood diseases including SCD, enhancing health and quality of life outcomes, developing transition to adult care programs, and fostering the development of diverse emerging clinical investigators trained to conduct independent health services and implementation research studies.
|Crosby, Lori E; Joffe, Naomi E; Reynolds, Nina et al. (2016) Psychometric Properties of the Psychosocial Assessment Tool-General in Adolescents and Young Adults With Sickle Cell Disease. J Pediatr Psychol 41:397-405|
|Crosby, Lori E; Joffe, Naomi E; Davis, Blair et al. (2016) Implementation of a Process for Initial Transcranial Doppler Ultrasonography in Children With Sickle Cell Anemia. Am J Prev Med 51:S10-6|
|Loiselle, Kristin; Lee, Jennifer L; Szulczewski, Lauren et al. (2016) Systematic and Meta-Analytic Review: Medication Adherence Among Pediatric Patients With Sickle Cell Disease. J Pediatr Psychol 41:406-18|
|Crosby, Lori E; Joffe, Naomi E; Irwin, Mary Kay et al. (2015) School Performance and Disease Interference in Adolescents with Sickle Cell Disease. Phys Disabil 34:14-30|
|Crosby, Lori E; Quinn, Charles T; Kalinyak, Karen A (2015) A biopsychosocial model for the management of patients with sickle-cell disease transitioning to adult medical care. Adv Ther 32:293-305|
|Walsh, Kathleen E; Cutrona, Sarah L; Kavanagh, Patricia L et al. (2014) Medication adherence among pediatric patients with sickle cell disease: a systematic review. Pediatrics 134:1175-83|
|Crosby, Lori E; Simmons, Kenya; Kaiser, Peggy et al. (2014) Using Quality Improvement Methods to Implement an Electronic Medical Record (EMR) Supported Individualized Home Pain Management Plan for Children with Sickle Cell Disease. J Clin Outcomes Manag 21:210-217|
|Crosby, Lori E; Smith, Teresa; Parr, William D et al. (2013) The Community Engagement and Translational Research Speaker Series: An Innovative Model of Health Education. J Community Med Health Educ 3:|
|Crosby, Lori E; Parr, William; Smith, Teresa et al. (2013) The community leaders institute: an innovative program to train community leaders in health research. Acad Med 88:335-42|
|Crosby, Lori E; Joffe, Naomi E; Dunseath, Linda A et al. (2013) Design Joins the Battle Against Sickle-cell Disease. Des Manage Rev 24:48-53|
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