“I know my body better than you:” patient focus groups to inform a decision aid on oral corticosteroid use during pregnancy

Abstract

Purpose There is unmet need for decision support regarding medication use during pregnancy. We aimed to inform the development of a decision aid on oral corticosteroid (OCS) use during pregnancy through focus groups. Methods We invited patients from one health system who had a recent live birth and a condition for which OCSs may be prescribed (ie, asthma or other autoimmune disease) to participate in focus groups. We conducted conventional qualitative content analysis of verbatim transcripts of the focus groups using inductive coding. Results There were 30 participants across five focus groups from May to June 2019. Women endorsed the need for patient‐provider discussions about OCS use during pregnancy in which the provider shares risks and benefits and the patient makes her decision. Furthermore, women generally expressed support for patient‐centered handouts about OCS use during pregnancy that the provider discusses with the patient. When considering whether to take OCSs in pregnancy, women had concerns about: the medication's impact on their baby (eg, miscarriage, birth defects, long‐term effects), themselves (eg, effects on mood, sleep, weight gain), pregnancy complications (eg, preterm birth, increased blood pressure), and lactation. Women wanted information on OCSs (eg, indications, length of treatment, and cost), alternative treatments, and risks of not taking OCSs. Conclusions We established patient need for a decision aid on OCS use during pregnancy that providers can discuss with patients. To address patient concerns, the aid should at a minimum describe the medication's impact on baby, including long‐term effects, maternal health, pregnancy complications, and lactation.

Perceptions of conflicting information about long-term medications: a qualitative in-depth interview study of patients with chronic diseases in the Swiss ambulatory care system

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Autoimmune hepatitis in pregnancy: Pearls and pitfalls

“…Prednis(ol)one carries a significant side effect burden that may reduce treatment adherence. [40] Even low dose corticosteroids occasionally used as maintenance therapy (in conjunction with thiopurines) can have adverse effects, especially related to bone health. [41] In the recent case series of budesonide use in AIH pregnancies, there were two intrapartum LOBR, of which one patient voluntarily stopped azathioprine due to safety concerns for the fetus.…”

“…Prednis(ol)one carries a significant side effect burden that may reduce treatment adherence. [ 40 ] Even low dose corticosteroids occasionally used as maintenance therapy (in conjunction with thiopurines) can have adverse effects, especially related to bone health. [ 41 ]…”