Caregiver-Perceived Facilitators and Barriers to Oral Iron Therapy in Young Children with Iron Deficiency Anemia

Background

In the U.S., 2 to 3% of children age 1 to 3 years are affected by nutritional iron deficiency anemia (IDA). Children of Hispanic/Latino ethnicity are disproportionately affected and have rates approximately double that of other racial and ethnic groups. IDA is associated with inferior neurodevelopmental outcomes, poorer executive functioning, and decreased visual and auditory processing time. Treatment with oral iron mitigates against the consequences of IDA. Non-adherence to oral iron often results in treatment failure, and incomplete therapy prolongs the extent of IDA consequences. We aim to characterize barriers to and facilitators of oral iron therapy in young children with nutritional IDA.

Methods

Infants and children aged 9 months to 4 years (all racial and ethnic groups) with nutritional IDA (assessed by history and laboratory criteria) and treated with oral iron therapy in the outpatient hematology clinic at a large US tertiary care pediatric hospital are identified. English or Spanish-speaking caregivers of identified children are invited to participate with the goal of conducting half the interviews in each language. In person audio-recorded semi-structured interviews are conducted by a research coordinator trained in qualitative methods using an IDA interview guide developed by a multidisciplinary research team. The guide is divided into 6 broad categories: diagnosis, consequences, experience with oral iron therapy (barriers to and facilitators of adherence), motivation, and alternate treatment options. For Spanish-speaking caregivers, an in-person Spanish interpreter assists with the interview.

Verbatim transcripts are reviewed manually by 2 members of the research team to perform thematic analysis and identify common patterns in responses. Interviews and qualitative analysis will continue until thematic saturation is achieved (i.e. no new themes emerge from subsequent interviews). Clinical data, including laboratory values and treatment regimen, are abstracted from the patient's electronic medical record. Here we present findings from the initial six months of the study (February to July 2017).

Results

Nine caregivers to date have been approached, and all enrolled. Patients had a mean age of 20 months (range 12 to 32 months); 5 (55%) were male. Nine caregiver interviews were completed; six in English and three in Spanish. All caregivers self-identified as White and Hispanic/Latino. Median hemoglobin concentration at patients' first visit within the hematology clinic was 8.6 g/dL (range 5.4 to 10.4 g/dL). Median duration of oral iron therapy at the time of interview was 4 months (range 2 to 10 months).

Caregivers expressed a range of emotions that included fear and anxiety at time of diagnosis and optimism with treatment resolution. Many stated desire to have received information on risk factors and prevention of iron deficiency prior to their child's development of IDA. Regarding the diagnosis of IDA, most caregivers had a basic understanding of the condition, though some misinformation was present. Widely variable consequences of IDA were described, which included: changes in skin color, decreased energy, and potential for more severe disease if undetected. Negative traits of iron therapy, specifically poor taste and difficulty in getting child to take the medication, were barriers. Transition to better tasting formulations overcame these barriers for some families. When presented with information on intravenous iron therapy, most caregivers demonstrated willingness for their child to receive it if oral iron failed. Most caregivers deferred treatment-related decision-making to the recommendation of the physician.

Conclusion

Caregiver-perceived barriers to oral iron adherence were poor taste and difficulty in getting the child to take the medication. Knowledge regarding the diagnosis of IDA was not a consistent barrier as most caregivers reported a basic understanding of the condition. Specific caregiver-identified motivating factors and facilitators to oral iron adherence have not yet been elucidated. Additional, more targeted qualitative interviews with caregivers will be performed to elicit such information. These results will inform future patient-centered interventions aimed at promoting treatment in children with IDA.