JMIR Publications

ABSTRACT

Background:

Patient engaged design of digital tools has rarely been described in obstetric populations who experience specific vulnerabilities related to matrescence and thus may have unique needs for engagement compared to other populations.

Objective:

We utilize a patient-engaged approach involving patients to prepare a digital navigation tool for individuals with iron deficiency anemia in pregnancy for a planned type I hybrid effectiveness-implementation trial.

Methods:

This three-phase qualitative study was performed at one urban, academic institution from January to May 2022. In Phase 1, we performed key informant interviews of patients with IDA regarding barriers and facilitators to IVFe (n=10). In Phase 2, we utilized Phase 1 data to develop a patient navigation tool. In Phase 3, we conducted four focus groups of patients with IDA (n=15) to assess the feasibility and acceptability of the draft tool and to solicit suggestions regarding tool design and implementation. Interviews and focus groups were analyzed using an integrated approach, incorporating a priori attributes of a theoretical framework of acceptability (Sekhon et al 2017) with grounded theory.

Results:

In Phase 1, key informants reported information gaps about 1) the consequences of untreated IDA in pregnancy, 2) the logistical aspects of treatment completion, and 3) the treatment plan trajectory (i.e. timing of transition from oral to IVFe), which all limited IVFe completion. Other barriers included negative social drivers of health (SDOH), cognitive burden, and adverse medication effects. Treatment facilitators included clinician counseling, prior experience with IDA, positive SDOH, and pregnancy-related motivation. The tool developed in Phase 2 was specifically designed to address the information gaps (barriers) and to reinforce counseling points (facilitators) identified by key informants using a three-pronged approach. These included (1) clinical education about IDA, (2) treatment planning (a tracking tool recording hemoglobin values and reviewing treatment recommendations), and (3) key logistics to obtaining IVFe. Phase 3 focus groups showed high acceptability of the draft tool but also revealed feasibility concerns. Focus groups suggested digitalization of the tool and recommended implementation strategies for the upcoming trial based on their lived experience.

Conclusions:

This multi-phase, patient-engaged qualitative approach developed and optimized a digitalized IDA patient navigation tool in anticipation of a Type 1 hybrid effectiveness-implementation trial. Clinical Trial: Not applicable.