Objective

To describe and compare how obstetric patients and care providers view preterm birth risk assessment and communication.

Methods

We conducted eight focus groups with obstetric patients (n = 35) and 16 qualitative interviews with obstetric providers. Grounded theory was used to identify and analyze themes.

Results

Patients' knowledge about preterm birth varied greatly. Similar benefits and risks of preterm birth risk counseling were discussed by patients and providers with notable exceptions: patients cited preparedness as a benefit and providers cited maternal blame, patient alienation, and estimate uncertainty as potential risks. Most patients expressed a desire to know their personalized preterm birth risk during pregnancy. Providers differed in whether they offer universal versus selective, and quantitative versus qualitative, preterm birth risk counseling. Many providers expressed concern about discussing social and structural risk factors for preterm birth.

Conclusion

While many patients desired knowing their personalized preterm birth risk, prenatal care providers' disclosure practices vary because of uncertainty of estimates, concerns about negative consequences and challenges of addressing systemic inequities and social determinants of health.

Practice implications

Given the existing asymmetry of information about preterm birth risk, providers should consider patient preferences regarding and potential benefits and risks of such disclosure in their practice.

Background

To report user-centered design methods and stakeholder acceptability ratings of the Periviable GOALS (Getting Optimal Alignment around Life Support) decision aid (DA).

Methods

'Experienced' and 'expectant' mothers engaged in content and design refining sessions. Five videos (10 families) were embedded in the DA to highlight life after delivery. User-testing sessions were conducted with mothers and providers to assess acceptability. End-user testing was conducted with hospitalized women facing potential periviable delivery to assess acceptability and feasibility in the clinical setting.

Results

108 participants engaged in sessions from July 2017-January 2020. Twenty-seven refining sessions resulted in a DA providing survival estimates, neonatal outcomes descriptions, and values clarification exercises. Five white and five black women participated in the videos; six having surviving children (ages 16 months-4 years). Twelve mothers, 16 providers, and six hospitalized women evaluated acceptability. 95.1 % found the content "just right," 94.9 % rated the videos "good" or "excellent," and 97.2 % believed GOALS would support families in periviable decision-making.

Conclusion

Our results highlight the importance of developing a DA that is acceptable for patient use with direct involvement of stakeholders.

Practice implications

The GOALS DA may prepare families to engage in shared decision-making to facilitate more patient-centered models of periviable care.