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Hematopoietic stem cell transplant (HSCT) is a treatment for pediatric patients with a wide range of serious immunological, hematological and oncological diagnoses. The first 6- to 7-months post-HSCT is a critical period during which children are most at risk for life-threatening infections and graft versus host disease (GVHD). To prevent these serious complications, an intense prophylactic oral medication regimen is prescribed. Non-adherence to this regimen results in suboptimal drug exposure increasing the patient’s risk of these post- transplant complications. Despite this, there are no rigorous scientific studies documenting the modifiable factors that predict non-adherence or how NA impacts HSCT outcomes.
The HOME study will identify factors influencing adherence in pediatric HSCT. Two hundred and fifty-four caregivers of children (ages ≤ 12 years) will be recruited and complete online questionnaires to assess factors expected to be associated with NA prior to the child’s discharge and at 1-, 3-, 5-, & 7-months post-discharge. The HOME study will provide the fundamental knowledge that is needed to develop time- and treatment-specific behavioral and systems-based adherence interventions that will optimize the delivery and efficacy of medical treatments.
Funding Information: NIH R01
The CAPS Study has been completed and is now entering the data analysis phase. The objectives of the CAPS Study were to: 1) to optimize patient adherence of adolescents and young adults (A/YA) with cancer by incorporating a collaborative adherence promotion intervention into routine clinical care, and 2) to increase medical provider knowledge regarding oral medication adherence monitoring and promotion for A/YA with cancer. Using quality improvement (QI) methodology (i.e., Plan, Do Study Act Cycles; PDSAs), a clinic-based adherence promotion intervention was integrated into regular clinical visits for adolescents and young adults being treated for leukemia or lymphoma at Cincinnati Children's. This study hopes to establish evidence-based standards of clinical care for adherence assessment and promotion in pediatric oncology.
Funding Information: OhioPACE
Childhood cancer survivors are at high risk for a number of serious and life-threatening late effects including heart disease and secondary cancers. These risks increase substantially as survivors grow older. Yet, cancer-related medical visits to a cancer center as outlined in the Children’s Oncology Group (COG) Long-Term Follow-up Guidelines (LTFU) made by childhood cancer survivors needed to prevent, detect and treat late effects decrease as survivors age. Non-adherence to the LTFU guidelines for preventative screening and care for childhood cancer survivors has a significant impact on clinical management and health. Therefore, the goals of this study are to identify modifiable factors (e.g., social support, insurance status) that distinguish survivors that engage in follow-up care from those who do not, and to determine the differences in adherence to LTFU guidelines for childhood cancer survivors and adherence to recommended preventative care for a matched healthy control sample. Identification of these factors will directly inform models of health care that will better support survivors adherence to the LTFU guidelines. We are also interested in identifying developmentally specific patterns of variables that are predictive of non-adherence. Participants will be asked to complete online questionnaires assessing adherence and psychological factors potentially related to adherence. This study will provide the first objective assessment of survivor adherence to LTFU guidelines, identify modifiable factors related to adherence, provide the data to develop survivorship care algorithms, and inform the development evidence-based tailored survivorship care plans.
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