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Sickle-cell disease is an inherited blood disorder that affects red blood cells. People with sickle-cell disease have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells have difficulty passing through small blood vessels. When the damaged cells block small blood vessels, tissue that does not receive a normal blood flow eventually becomes damaged. These blockages can cause other complications such as lung tissue damage (acute chest syndrome), pain episodes (arms, legs, chest and abdomen), stroke and priapism (painful prolonged erection). Sickle-cell disease also damages most organs including the spleen, kidneys and liver. Damage to the spleen makes sickle-cell patients, especially young children, easily overwhelmed by certain bacterial infections.
More information about this disease can be found online at www.sicklecelldisease.org.
Because sickle-cell disease affects so many people, conducting relevant and effective research is imperative. Our goal is to improve the quality of life, health and services for individuals and families living with sickle-cell disease, while empowering them to participate in disease-related projects. Learn more about our studies investigating various aspects of sickle-cell disease:
Sickle-cell disease (SCD) is an inherited blood disorder that affects red blood cells. People with SCD have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells have difficulty passing through small blood vessels. When the damaged cells block small blood vessels, tissue that does not receive a normal blood flow eventually becomes damaged. These blockages can cause other complications such as lung tissue damage (acute chest syndrome), pain episodes (arms, legs, chest and abdomen), stroke and priapism (painful prolonged erection). SCD also damages most organs including the spleen, kidneys and liver. Damage to the spleen makes sickle-cell patients, especially young children, easily overwhelmed by certain bacterial infections.
More information about sickle cell disease can be found online at www.sicklecelldisease.org.
SCD affects 90-100 thousand people in the US, conducting relevant and effective research is imperative. Our goal is to improve the quality of life, health and services for individuals and families living with SCD, while empowering them to participate in disease-related projects.
Sickle Cell Disease Research and Education Day is an annual event that brings together patients with sickle cell disease and their families to enjoy a fun filled day of education and research. This event has been successful for over a decade, with over 600 patients and 90 families attending in the past year. Families engage in educational presentations as well as on-site research studies throughout the day. With a deeply rooted “family reunion” atmosphere, Sickle Cell Disease Research and Education Day starts off with a buffet lunch and offers families the opportunity to meet one another or renew friendship. Through education, research, and fellowship, attendees are able to develop a greater sense of awareness of the disease and its management.
For more information about the event and to learn how you can be involved with the next Sickle Cell Disease Research and Education Day, please contact us at SCDResearchDay@cchmc.org.
We are working on designing and evaluating an interactive, web-based portal that integrates current medical records for patient use outside the hospital setting. We are assessing patient utilization and perceptions of the portal (i.e., acceptability, accuracy, usefulness). In addition, we are evaluating the impact of the patient portal on transition (e.g., transition readiness, attendance, patient-provider communication) and health (e.g., quality of life, disease morbidity, healthcare satisfaction and distress) outcomes for these adolescents and young adults as they transition to adult sickle cell care.
Lori E. Crosby, PsyDAssociate ProfessorDivision of Behavioral Medicine and Clinical Psychology
Uma Kotagal, MBBS, MScProfessorAnderson Center for Health Systems Excellence
Maria Britto, MDProfessorDivision of Adolescent Medicine
Dennis Drotar, PhDProfessorCenter for Adherence & Self-Management
Karen Kalinyak, MDProfessorDirector, Hematology/Oncology Outpatient Services
Clinton Joiner, MDProfessor;Division of HematologyChildren's Healthcare of Atlanta
Ellen Manegold, BAClinical Research Coordinator IIDivision of Behavioral Medicine and Clinical Psychology
Megan Dailey, BAClinical Research Coordinator IIDivision of Behavioral Medicine and Clinical Psychology
Sponsors:CCHMC Place Outcomes Research AwardsNIH-NHLBI(K07 HL108720)
The goal of this study is to design and test the effects of a chronic disease self-management intervention for adolescents and young adults with sickle cell disease (SCD). The study examines if participation in the intervention will help adolescents and young adults with SCD develop a healthier lifestyle and have better health outcomes.
Adolescents and young adults with SCD between the ages of 16 and 24 are eligible to participate as well as their care providers. The intervention will be provided in a group format meeting once per week for six weeks. Participants will learn how to deal with SCD, getting frustrated with SCD, and coming up with a plan to deal with SCD.
Uma Kotagal, MBBS,MScProfessorAnderson Center for Health Systems Excellence
Karen Kalinyak, MDProfessor; Director, Hematology/Oncology Outpatient ServicesCancer and Blood Diseases Institute
Clinton Joiner, MDProfessor, Division of HematologyChildren’s Healthcare of Atlanta
Alexandra Bruck BSClinical Research Coordinator IIDivision of Behavioral Medicine and Clinical Psychology
Sponsors:CCHMC Place Outcomes Research AwardsNIH-NHLBI (K07 HL108720)
The aim of this study is to better understand how adolescents and young adults with sickle cell disease (SCD) manage their disease on a daily basis and how it relates to their quality of life. The results of this study will be used to develop strategies to improve the transition to adult care for SCD patients.
Naomi Joffe, PhDAssistant ProfessorDivision of Behavioral Medicine and Clinical Psychology
Brigitte Beale, MAGraduate Research AssistantDivision of Behavioral Medicine and Clinical Psychology
CCHMC Place Outcomes Research AwardsNIH-NHLBI(K07 HL108720)
This study is focused on better understanding the educational and vocational needs of adolescents with sickle-cell disease (SCD) as they transition to the adult healthcare system and is working to answer three primary questions:
Data collection has been completed. Analyses are being run and results will be written up for publication (as of October, 2012).
Mary Kay Irwin, MEdSchool Intervention CoordinatorCancer and Blood Diseases InstituteCincinnati Children’s Hospital Medical Center
Lisa Shook, MA, CHESField InstructorDivision of HematologyCancer and Blood Diseases Institute
Monica Mitchell, PhDProfessorDivision of Behavioral Medicine and Clinical Psychology
Heather Strong BAGraduate Research Assistant IIDivision of Behavioral Medicine and Clinical Psychology
Previous research, including our own studies, suggest that adherence is low to moderate across treatments among patients with sickle-cell disease. Studies in other chronic illness groups have shown that problem-solving interventions can improve adherence by reducing barriers to effective disease management. This literature has also demonstrated the potential benefits of adherence on physical and psychosocial health. Phase II of this ongoing study involves implementing and evaluating a clinic-based provider-patient collaborative problem-solving intervention to improve adherence to clinic attendance and HU therapy.
Lori E. Crosby, PsyDProfessorDivision of Behavioral Medicine and Clinical Psychology
Avani Modi, PhDAssociate ProfessorCenter for Adherence and Self-Management
Michael Seid, PhDDirector, Health Outcomes and Quality of Care ResearchDivision of Pulmonary Medicine and Center for Health Care Quality
Janelle Hines, PhDClinical Research Coordination IVDivision of Behavioral Medicine and Clinical Psychology
Sponsor: NIH / NHLBI, the Division of Behavioral Medicine & Clinical Psychology
We have conducted two studies with sickle cell disease patients using the PhotoVoice methodology. PhotoVoice is a method that involves having patients take pictures about some aspect of their lives. Participants then meet and discuss their pictures in a group setting (Hergenrather, Rhodes, Cowan, Bardhoshi, & Pula, 2009). A recent PhotoVoice study suggests that children who participate in this type of project are more likely to engage in health-promoting behaviors (Strack, Magill, & McDonagh, 2004; Catalani & Minkler, 2010).
In our first study, our goal was to use PhotoVoice to understand how patients perceive their lives and what it is like to have sickle cell disease. We also wanted to see if this method (PhotoVoice) is feasible, acceptable, and beneficial for promoting self-expression, social engagement and health promotion in pediatric SCD. In our second study, we are using PhotoVoice to understand how teens and young adults integrate technology into their lives, manage their sickle cell on a daily basis, and how they view their interactions with the medical team.
We believe there is still much to identify regarding the needs of parents whose children have sickle cell disease (SCD), including access to viable information regarding pediatric SCD. Information such as the types of support available to parents in terms of their child’s physical, mental and spiritual health would be invaluable. Research in this area will help reduce health disparities by providing much needed information as well as providing interventions via multiple channels.
The purpose of this study is to better understand the social networks of parents of children with SCD. We will examine the following research questions: What are perceived needs of parents’ concerning their child’s SCD related health issues? What sources of information are utilized by parents regarding SCD? Lastly, do perceived child health needs, parental attributions and sources of health information differ among parents?
This project aims to increase awareness about hemoglobinopathies, especially sickle-cell trait, through increased newborn screening counseling, community outreach and professional education. It also aims to improve the quality of specialty and primary care provided to newborns with sickle-cell disease.
This ongoing project has four main objectives:
Partners include the Sickle-Cell Affected Families of Greater Cincinnati, Ohio Sickle Cell and Health Association, Hoxworth Internal Medicine / Pediatrics, Ohio Department of Health (State Title V organization).
Building on the findings from our previous study, which demonstrated some risk for children with sickle-cell disease to be under- or overweight, this ongoing study has three goals related to nutrition and sickle-cell disease:
Janelle Hines, PhDClinical Research Coordinator IVDivision of Behavioral Medicine and Clinical Psychology
Sponsor: Division of Behavioral Medicine and Clinical Psychology
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