Crosby Lab

  • Sickle-Cell Projects

    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:

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    + What is 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.

    Sickle-Cell IllustrationMore 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 & Education Day

    Sickle-Cell Disease Research & Education DaySickle 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.

    + Portal Intervention

    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.

    Primary Investigator

    Lori E. Crosby, PsyD
    Associate Professor
    Division of Behavioral Medicine and Clinical Psychology

    Co-investigators

    Uma Kotagal, MBBS, MSc
    Professor
    Anderson Center for Health Systems Excellence

    Maria Britto, MD
    Professor
    Division of Adolescent Medicine

    Dennis Drotar, PhD
    Professor
    Center for Adherence & Self-Management

    Karen Kalinyak, MD
    Professor
    Director, Hematology/Oncology Outpatient Services

    Clinton Joiner, MD
    Professor;Division of Hematology
    Children's Healthcare of Atlanta

    Coordinators

    Ellen Manegold, BA
    Clinical Research Coordinator II
    Division of Behavioral Medicine and Clinical Psychology

    Megan Dailey, BA
    Clinical Research Coordinator II
    Division of Behavioral Medicine and Clinical Psychology

    Funding

    Sponsors:
    CCHMC Place Outcomes Research Awards
    NIH-NHLBI(K07 HL108720)

    + iTransition Self-Management Intervention

    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.

    Collaborations

    Primary Investigator

    Lori E. Crosby, PsyD
    Associate Professor
    Division of Behavioral Medicine and Clinical Psychology

    Co-investigators

    Uma Kotagal, MBBS,MSc
    Professor
    Anderson Center for Health Systems Excellence

    Maria Britto, MD
    Professor
    Division of Adolescent Medicine

    Dennis Drotar, PhD
    Professor
    Center for Adherence & Self-Management

    Karen Kalinyak, MD
    Professor; Director, Hematology/Oncology Outpatient Services
    Cancer and Blood Diseases Institute

    Clinton Joiner, MD
    Professor, Division of Hematology
    Children’s Healthcare of Atlanta

    Coordinators

    Ellen Manegold, BA
    Clinical Research Coordinator II
    Division of Behavioral Medicine and Clinical Psychology

    Megan Dailey, BA
    Clinical Research Coordinator II
    Division of Behavioral Medicine and Clinical Psychology

    Alexandra Bruck BS
    Clinical Research Coordinator II
    Division of Behavioral Medicine and Clinical Psychology

    Funding

    Sponsors:
    CCHMC Place Outcomes Research Awards
    NIH-NHLBI (K07 HL108720)

    + iTransition Disease Management

    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.

    Primary Investigator

    Lori E. Crosby, PsyD
    Associate Professor
    Division of Behavioral Medicine and Clinical Psychology

    Coordinator

    Naomi Joffe, PhD
    Assistant Professor
    Division of Behavioral Medicine and Clinical Psychology

    Brigitte Beale, MA
    Graduate Research Assistant
    Division of Behavioral Medicine and Clinical Psychology

    Funding

    CCHMC Place Outcomes Research Awards
    NIH-NHLBI(K07 HL108720)

    + Educational and Vocational Needs of Youth with Sickle-Cell Disease

    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:

    1. What are their specific needs of this population as they transition?
    2. What academic resources are they currently using?
    3. Do parents and adolescents agree on what educational/vocational resources are needed?

    Data collection has been completed. Analyses are being run and results will be written up for publication (as of October, 2012).

    Collaborations

    Primary Investigator

    Lori E. Crosby, PsyD
    Associate Professor
    Division of Behavioral Medicine and Clinical Psychology

    Coinvesitgators

    Mary Kay Irwin, MEd
    School Intervention Coordinator
    Cancer and Blood Diseases Institute
    Cincinnati Children’s Hospital Medical Center

    Lisa Shook, MA, CHES
    Field Instructor
    Division of Hematology
    Cancer and Blood Diseases Institute

    Monica Mitchell, PhD
    Professor
    Division of Behavioral Medicine and Clinical Psychology

    Coordinator

    Heather Strong BA
    Graduate Research Assistant II
    Division of Behavioral Medicine and Clinical Psychology

    + Improving Adherence to Therapy for Sickle-Cell Disease (ROGER study) – Phase II

    ROGER StudyPrevious 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.

    Collaborations

    Principal Investigator

    Monica Mitchell, PhD
    Professor
    Division of Behavioral Medicine and Clinical Psychology

    Coinvestigators

    Lori E. Crosby, PsyD
    Professor
    Division of Behavioral Medicine and Clinical Psychology

    Avani Modi, PhD
    Associate Professor

    Center for Adherence and Self-Management

    Karen Kalinyak, MD
    Professor; Director, Hematology/Oncology Outpatient Services
    Cancer and Blood Diseases Institute

    Michael Seid, PhD
    Director, Health Outcomes and Quality of Care Research
    Division of Pulmonary Medicine and Center for Health Care Quality

    Research Coordinators

    Janelle Hines, PhD
    Clinical Research Coordination IV
    Division of Behavioral Medicine and Clinical Psychology

    Funding

    Sponsor: NIH / NHLBI, the Division of Behavioral Medicine & Clinical Psychology

    + Giving Voice to Children with Sickle Cell: PhotoVoice Perceptions of Pain

    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.

    + The Social Network of Parents of Children Who Have Sickle-Cell Disease: Perceived Needs and Sources of Information Regarding Their Child’s Physical, Mental and Spiritual Health

    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?

    + Cincinnati Sickle Cell Newborn Screening Network

    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:

    • Educate professionals about the newborn screening process, confirmatory testing and trait testing, and educate the community about the importance of sickle-cell trait testing.
    • Overcome barriers that prevent parents from bringing newborns with hemoglobinopathies to clinic, by assessing adherence issues and developing intervention strategies.
    • Address the availability of primary care for newborns with hemoglobinopathies by designing and implementing a pilot project for collaboration with a primary care “medical home” practice.
    • Address the medical, psychosocial and educational needs of families with newborns living with sickle-cell disease, sickle-cell trait or other hemoglobinopathies through a partnership with a regional, community-based sickle-cell advocacy and support program.

    Collaborations

    Primary Investigator

    Lisa Shook, MA, CHES
    Field Instructor
    Division of Hematology
    Cancer and Blood Diseases Institute

    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).

    + Nutrition in Pediatric Sickle-Cell Disease

    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:

    1. To better understand the dietary intake and mealtime behavior patterns of children ages 5-12 with sickle-cell disease.
    2. To understand the relationship between factors such as age, gender, disease severity, dietary intake, mealtime behavior and weight status in these children.
    3. To assess parent and child preferences for dietary intervention strategies

    Collaborations

    Principal Investigator

    Monica Mitchell, PhD
    Professor
    Division of Behavioral Medicine and Clinical Psychology

    Coinvestigators

    Lori E. Crosby, PsyD
    Professor
    Division of Behavioral Medicine and Clinical Psychology

    Research Coordinator

    Janelle Hines, PhD
    Clinical Research Coordinator IV
    Division of Behavioral Medicine and Clinical Psychology

    Funding

    Sponsor: Division of Behavioral Medicine and Clinical Psychology