App targets mental health after prenatal diagnosis of congenital heart disease

A psychosocial intervention delivered through a mobile app reduced distress and helped prepare pregnant women and their partners after a fetal diagnosis of congenital heart diseasebased on data from a pilot study.

A prenatal diagnosis of congenital heart disease often causes anxiety, depression, and traumatic stress in expectant parents, with long-term implications for the child and family. Erica OkayDoctorpediatric psychologist at the Nemours Cardiac Center at Alfred I. duPont Hospital for Children and director of the Nemours Cardiac Learning and Early Development (LEAD) Program and colleagues in an abstract presented at NeoHeart 2022. To address mental health issues, Sood and colleagues worked with interested parents to develop a psychosocial intervention accessible through a mobile app.

“Pregnancy is a vulnerable time for mental health in general, with higher rates of anxiety and depression, and when a fetus is diagnosed with a congenital heart defect, we see those rates double or even triple,” Sood told Healio. “My research has focused on the needs of parents of children with congenital heart disease. We have repeatedly heard that families feel they are receiving excellent medical care, but the emotional aspects are not a focus.”

Connecting families, addressing stressors

In a pilot study, Sood and colleagues analyzed data from 33 pregnant women with a fetus diagnosed with complex congenital heart disease, recruited from Nemours Children’s Health in Delaware and Florida. The HEARTPrep app was delivered in English and Spanish through the Nemours app, a mobile app for telehealth and patient education.

HEARTPrep consists of three modules: adaptation to the news of a diagnosis; connect with support networks; and preparation, with a focus on the stressors families are likely to face once the baby is born. Each module has six elements, including normalizing common emotions after a diagnosis, the role of cultural beliefs and faith, and peer support, Sood said. The intervention was delivered through one-on-one telehealth sessions and a series of videos featuring other parents discussing their experiences.

“We work with parents from diverse backgrounds in the United States to determine what we should do during pregnancy to impact those long-term outcomes,” Sood said in an interview.

Completers participated in at least three of the 12 telehealth sessions and rated acceptability and feasibility using a Likert scale (0 “not at all” to 4 “a lot”) and open-ended questions.

Within the cohort, 30 parents enrolled and 25 completed the HEARTPrep program; half of the partners also participated (52%).

Most parents (95%) reported that they really liked using an app for psychosocial intervention, felt comfortable participating, and would recommend HEARTPrep to others.

Reduced distress, isolation after intervention

Most reported that HEARTPrep “a lot” helped them feel less anxious (80%), less isolated (90%), more prepared (95%) and more hopeful (90%), according to the researchers.

Responses indicated that the opportunity to process emotions, develop coping skills, navigate relationships and connect with supportive peers were the most impactful, Sood said.

“Because this is something that is not commonly done in fetal cardiology, we wanted to know if families find it acceptable.” Sood told Healio. “We found that people were happy with the program; our average score was 3.79 out of 4. Participants appreciated the ability to simply talk to someone who knew about congenital heart disease and guide them through the emotional aspects and the ability to connect with other parents through the video series” .

Sood said next steps include further testing of HEARTPrep, the development of a personalized HEARTPrep panel with feedback from parents, and a randomized controlled trial comparing HEARTPrep to standard fetal care, evaluating immediate and long-term outcomes such as anxiety and post-traumatic stress.

“There is a lot of interest in this approach within the field of fetal cardiology,” Sood said.

The American Heart Association recently addressed the psychological needs of people with congenital heart disease in a scientific statement published in July. What Healio previously reported, the authors wrote that the responsibility for accessing psychological care after a diagnosis of congenital heart disease should not rest solely on the shoulders of patients and their families.