Evaluating the Use of a Decision Aid for Parents Facing Extremely Premature Delivery: A Randomized Trial

Abstract

Objective: To assess decisional conflict and knowledge about prematurity among mothers facing extreme premature delivery when the counseling clinicians were randomized to counsel using a validated decision aid compared with usual counseling. Study design:In this randomized trial, clinicians at 5 level III neonatal intensive care units (NICUs) in the United States were randomized to supplement counseling using the DA or to counsel mothers in their usual manner. We enrolled mothers with threatened premature delivery at 22 0/7 -25 6/7 weeks of gestation within 7 days of their counseling. The primary outcome was the Decisional Conflict Scale score (DCS). One hundred mothers per group were enrolled to detect a clinically relevant effect size of 0.4 in DSC. Secondary outcomes included knowledge about prematurity; scores on the Preparedness for Decision Making scale; and acceptability.Results: Ninety-two clinicians were randomized and 316 mothers were counseled. Of these, 201 (64%) mothers were enrolled. The median gestational age was 24.1wks (IQR 23.7-24.9). In both groups, DCS scores were low (16.3±18.2 v 16.8±17, p=0.97) and Preparedness for Decision Making scores were high (73.4±28.3 v 70.5±31.1, p=0.33). There was a significantly higher knowledge score in the DA group (66.2±18.5 v 57.2±18.8, p=0.005). Most clinicians and parents found the DA useful. Conclusion:For parents facing extremely premature delivery, use of a DA did not impact maternal decisional conflict, but it significantly improved knowledge of complex information. A structured DA may improve comprehension of complex information.

Outcomes following medical termination versus prolonged pregnancy in women with severe preeclampsia before 26 weeks

“…Guillen et al recently evaluated the use of a decision-making tool to inform parents with a high risk of extreme prematurity in order to investigate values and to ensure an informed parental decision concerning neonatal artificial life support. The authors observed that the use of this tool was related to greater understanding of complex information [ 21 ]. This kind of tool could be studied in the population with early-onset severe preeclampsia in order to explain maternal risks and perinatal survival and complications for joint parental and medical decision-making.…”

Decision aids available for parents making end‐of‐life or palliative care decisions for children: A scoping review

“…It was modified and then embedded in a guideline, which was assessed in a qualitative study . It was also adapted into video format, translated into Spanish and tested in a randomised controlled trial (RCT) …”

“…Participants found DAs to be user‐friendly, understandable, acceptable and informative . Use of DAs was associated with increased knowledge, understanding and information recall and reduced decisional conflict . However, many parents viewed values clarification exercises as unclear, and some parents were unsure about the probabilities of complications .…”

“…Although DAs are meant for point‐of‐care use, participants involved in the development were families who had previously made the decision that was the focus of the aid or who might be faced with that decision in the future . Only the Prematurity Decision Aid and Indomethacin Therapy in Low Birth Weight Infants Decision Aid were used in real time with parents currently making a decision. When faced with stressful decisions, parents' stress and factors associated with the decision may alter the usefulness of DAs; thus, testing in real time is a critical but often missing component in evaluation.…”

Frühgeborene an der Grenze der Lebensfähigkeit (Entwicklungsstufe S2k, AWMF-Leitlinien-Register Nr. 024/019, Juni 2020)

“…die sowohl für Entscheidungen in der Schwangerschaft als auch in Bezug auf die Behandlung extrem frühgeborener Kinder entwickelt wurden, [16][17][18][19], können Eltern helfen, komplexe Zusammenhänge besser zu verstehen. Sie entschärfen jedoch nicht den Entscheidungskonflikt [20,21]. Letztlich bildet der Dialog zwischen Ärztinnen und Ärzten einerseits und den Eltern andererseits, in dem die Sachkompetenz vornehmlich auf ärztlicher Seite, die Wertekompetenz vornehmlich bei den Eltern angesiedelt ist, das Kernstück einer gemeinsamen, partizipativen Entscheidungsfindung ("shared decision making") [22][23][24].…”