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Research Project: Childhood Obesity Prevention

Location: Children's Nutrition Research Center

Title: Caregiver perceptions of iron deficiency anemia and iron replacement therapies in young children with nutritional iron deficiency anemia

item Powers, Jacquelyn - Texas Children'S Hospital
item Nagel, Margaret - Texas Children'S Hospital
item Raphael, Jean - Texas Children'S Hospital
item Mahoney, Donald - Texas Children'S Hospital
item Buchanan, George - University Of Texas Southwestern Medical Center
item Thompson, Deborah - Debbe

Submitted to: Meeting Abstract
Publication Type: Abstract Only
Publication Acceptance Date: 2/9/2018
Publication Date: 5/3/2018
Citation: Powers, J.M., Nagel, M.E., Raphael, J.L., Mahoney, D.H., Buchanan, G.R., Thompson, D.J. 2018. Caregiver perceptions of iron deficiency anemia and iron replacement therapies in young children with nutritional iron deficiency anemia [abstract]. American Society of Pediatric Hematology/Oncology (ASPHO) Conference. May 2-5, 2018; Pittsburgh, PA. Oral Paper Presentation.

Interpretive Summary:

Technical Abstract: In the U.S., approximately 3% of young children develop iron deficiency anemia (IDA), with Hispanic/Latino children disproportionately affected. IDA is associated with inferior neurodevelopmental outcomes. Treatment with oral iron mitigates its consequences yet non-adherence often results in treatment failure. Our objective was to characterize caregiver perspectives of barriers to and facilitators of oral iron therapy in young children with nutritional IDA. Infants and children aged 9 months to 4 years with nutritional IDA (assessed by history and laboratory criteria) and treated with oral iron in the outpatient hematology clinic at a large US tertiary care pediatric hospital were identified. In person audio-recorded semi-structured interviews were conducted with caregivers by a trained research coordinator using an interview guide developed by a multidisciplinary research team. Verbatim transcripts were reviewed manually by 2 research team members to perform thematic analysis and identify common patterns in responses. Clinical data were abstracted from the electronic medical record. Eighteen patient-caregiver dyads enrolled. Patients' median age was 23 months (range 12 to 40); half were male. The majority self-identified as White and Hispanic/Latino (n=15). Eighteen interviews were completed (13 English; 5 Spanish). Median hemoglobin concentration at first hematology clinic visit was 8.3 g/dL (range 5.4 to 10.4 g/dL). Median duration of oral iron therapy at time of interview was 2 months (range 1 to 10). Caregivers expressed fear, anxiety, stress, and surprise at time of diagnosis and optimism with treatment resolution. Many wished they had been better informed about preventive dietary measures. Most had a basic understanding of IDA, though some misinformation was present. Widely variable IDA consequences included: changes in skin color, energy, and potential for more severe disease. Negative features of iron therapy, specifically poor taste and difficulty in getting child to take the medication, were barriers. Specific administration instructions, caregiver support, and transition to better tasting formulations were facilitators. Motivation to adhere to treatment included desire for their child to be healthy (e.g. increased energy, activity) and avoidance of traumatic experiences, such as additional blood draws or blood transfusion. Most demonstrated willingness for their child to receive intravenous iron if necessary but deferred decision-making to the provider. Knowledge regarding IDA and its consequences was not a consistent treatment barrier. Most caregivers deferred treatment-related decision-making to the recommendation of the provider. Interventions that increase caregiver motivation by emphasizing health benefits and avoidance of more invasive interventions should be explored in order to improve adherence to oral iron therapy.