Management tools include clearer communication, ’kindness,’ and peer support

Better support and communication are two ways that practitioners can step up to help expectant parents manage a fetal diagnosis of severe congenital heart disease (CHD), researchers reported.

In a qualitative study of 27 individuals (mostly mothers) from 17 families, uncertainty that was tied to “concrete questions and long-term unknown variables” was a central source of stress for parents, according to Kelly W. Harris, MD, of the Center for Biomedical Ethics and Society at Vanderbilt University Medical Center in Nashville, and co-authors.

“Uncertainty was identified as a pervasive central theme and was related both to concrete questions on scheduling, logistics, or next steps, and long-term unknown variables concerning the definitiveness of the diagnosis or overall prognosis,” they wrote in JAMA Network Open. “Practitioners helped families through their framing of uncertainty at various time points including before, during, and after the clinic visit.”

But the families also identified potential tools that clinicians can use to ease the experience, such as “counseling from fetal cardiologists… including verbal and written communication in lay language about the cardiac diagnosis, resources for ongoing support, and general patience and kindness,” the authors wrote.

They also called on fetal cardiologists to use counseling approaches that “overlap” with those used by pediatric palliative care specialists to manage parental concerns.

“Prenatal diagnosis of CHD is recognized as a particularly difficult time for parents…[their] fear of the unknown and wanting to make the best decisions for their child are stressful and often experienced as overwhelming,” noted Alun C. Jackson, PhD, of the Australian Centre for Heart Health in Melbourne, in an invited commentary accompanying the study.

The current research “captures well this sense of uncertainty” and offers “immediate, concrete logistical concerns for the families about how to manage the implications of the diagnosis and, in some cases, how to deal with a lack of a definitive diagnosis,” he wrote.

However, Harris and co-authors don’t take on the topic of pregnancy termination, Jackson pointed out, adding it is a “contentious issue,” as highlighted by a 2018 study by his group in parents coping with their child’s prenatal heart condition and discussions about termination. A 2018 study out of Czechoslovakia reported that parents’ decision to terminate increased with the severity of the defect and if the CHD-associated anomalies of the fetus were correctable.

Another potentially contentious issue surrounding prenatal CHD and termination – “fetal heartbeat” laws, enacted in 2019 by several states including Georgia and Kentucky (all face legal challenges), that effectively outlaws the procedure after 6 weeks of pregnancy. In the study, parents were interviewed at a median gestation age of 25 weeks and 32 weeks, so well outside the of these abortion-restricting laws.

“Parents acknowledged that there was no easy way to broach this subject and that it was one that highlighted their vulnerability and sense of responsibility for their child. The parents in that study suggested that they would have benefited from psychological support at that time,” Jackson wrote.

He also noted that such support could come from discussions with pediatric cardiologists, and with palliative care experts and other specialists for a “multidisciplinary approach [including] coping with transitions, such as from hospital to home and the systemwide communication with health professionals that this entails, and the development and maintenance of appropriate social support.”

The study was based on an analysis of transcripts of recorded telephone interviews with pregnant mothers and their support people, who were referred to and seen at the Fetal Cardiology Clinic at Vanderbilt Children’s Hospital from May 2019 to August 2019 with an initial likely diagnosis of complex CHD at any gestational age. Data analysis was done from August 2019 to November 2019.

The authors reported that 27 phone interviews were conducted at the first time point after the initial prenatal cardiology consultation while 15 were done at the second time point after a follow-up prenatal cardiology visit.

“Time point 1 occurred after the initial prenatal cardiology consultation at gestational ages of 20 to 35 weeks (median, 25 weeks). Time point 2 occurred after a follow-up prenatal cardiology visit at gestation ages of 29 to 37 weeks (median, 32 weeks),” they wrote.

Most interviewees were mothers (59%), followed by fathers (30%). The median age for all groups was 30.0 years. Nearly three-fourths of the interviewees were white. Over one-third already had one child. Seventy-one percent reported no family history of CHD.

The initial fetal diagnoses covered a range of severe CHD, including pulmonary stenosis or atresia (18%), coarctation of the aorta (18%), Tetralogy of Fallot (12%), and Ebstein anomaly (12%).

In terms of “concrete questions,” respondents cited “Receiving information about appointments and scheduling, logistics, and future steps was valuable…addressing some uncertainty and allowing participants to feel some sense of control or awareness of the process…one-third said they wanted more information on “’an appointment plan’… ’and the plan of action, and the coordination of care’,” Harris and co-authors reported.

As for “long-term uncertainties,” the parents mentioned the lack of a “100% definitive diagnosis” and “The need to wait before definitive diagnosis and intervention loomed large,” the authors wrote. Parents also said they worried not only about losing the baby, but also that a surviving child would have a poor quality of life.

“Approximately one-fourth believed they would feel a sense of certainty at birth, but approximately one-half feared the heart abnormality would haunt them throughout their child’s life,” Harris’ group said.

The authors offered avenues that practitioners can explore to mitigate parental uncertainty and stress:

  • Better communication starting with the referring physician: “Even when the diagnosis was consistent, practitioners who communicated ’differing information’ about the prognosis…caused ’a lot of ups and downs’.”
  • Awareness of non-verbal communication: “When everyone in the ultrasonography room is ’upbeat the whole time’ parents interpreted the mood to indicate a positive prognosis…[some ]described being ’blindsided’ [and having] “’no clue during the scan about bad news.’”
  • Post-clinic visit communication: “Some families noted that the specific words used to describe a heart condition had powerful effects on their own perspective. Two mothers described the positive impact of intentional language used by their fetal cardiologist. One explained, ’I vividly remember…it was just so sweet, everyone referring to it as a heart difference.’”
  • Peer support: “One-quarter of participants felt that connecting with other parents was helpful.”

The single-center study had limitations, including the fact that most of the mothers had already had a successful pregnancy so women having their first child may have a different experience.

“Future studies conducted at multiple institutions with a greater diversity of families and experience after delivery can further inform knowledge on this important topic,” the authors wrote.

  1. Uncertainty associated with concrete questions, such as information about appointments and scheduling, logistics, and future steps, as well as long-term unknown variables, was a central source of stress for parents who received a prenatal diagnosis of congenital heart disease (CHD).

  2. Findings from the qualitative analysis suggested that potential future interventions could focus on parental coping with uncertainty and information delivery by practitioners.

Shalmali Pal, Contributing Writer, BreakingMED™

Harris reported support from the National Heart, Lung, and Blood Institute (NHLBI) and the National Center for Advancing Translational Sciences. A co-author reported support from NHLBI.

Jackson reported no relationships relevant to the contents of this paper to disclose.

Cat ID: 138

Topic ID: 85,138,730,914,41,138,192,925