Fetal Cardiology

Uncertainty of Prenatally Diagnosed Congenital Heart Disease: A Qualitative Study

Uncertainty of Prenatally Diagnosed Congenital Heart Disease: A Qualitative Study Kelly W Harris 1 2, Kathleen M Brelsford 2, Ann Kavanaugh-McHugh 3, Ellen Wright Clayton 1 2 4 JAMA Network Open. 2020 May 1;3(5):e204082.   doi:0.1001/jamanetworkopen.2020.4082. PMID: 32369178 PMCID: PMC7201310 Free PMC article   Take-Home Points:   The most significant contributor of stress to parents with the prenatal diagnosis of severe congenital heart disease is uncertainty – especially as it relates to the long term unknown variables of the cardiac diagnosis. The strategies adopted by referring physicians and fetal cardiologists before, during, and after appointments reduced or compounded stress surrounding uncertainty. Potential interventions to reduce parental anxiety may include expectation-setting before referral clinic appointment, communication in clinic both verbal and nonverbal and identity formation after the new diagnosis. Parallels can be drawn and counseling practices from other specialties – such as pediatric palliative care adopted in managing parental stress.     Commentary from Dr. Venugopal Amula (Salt Lake City UT), section editor of Pediatric Cardiology Journal Watch: Parents with a prenatal diagnosis of severe congenital heart disease experience stress and anxiety. Mitigation strategies should take into account the longitudinal emotional experience of the parents in the prenatal period. Prenatal diagnosis is known to improve neonatal outcomes with congenital heart disease by informing postdelivery care and decreasing hypoxia, metabolic acidosis, and end-organ damage. Little is known about the impact of prenatal diagnosis on the psychological health of parents. Harris et al. perform a qualitative analysis of parents' prenatal experience in their account using a thematic analysis approach of professionally transcribed audio-recorded telephone interviews. The coding of the transcripts was performed and revised iteratively by one author while evaluating intercoder reliability using a second author. The structured interview was performed on parents referred to and seen at the Fetal Cardiology Clinic at Vanderbilt Children’s Hospital from May 2019 to August 2019. Twenty-seven individuals from 17 families participated in 42 phone interviews during pregnancy, 27 after the first appointment, and 15 after follow up pediatric cardiology appointments. The authors identified “Uncertainty” as a pervasive central theme and were 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. A portion of the uncertainty is solvable, especially concerning the process of care, but the portion that relates to details of anatomic diagnosis, the success of future interventions, etc. are unavoidable.   Although the report is limited by small sample size and may not represent a broad parental group with differing demographic, clinical, and cultural characteristics, it provides preliminary insight into the contributors to stress and potential interventions needed.    

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Implementation of a statewide, multisite fetal tele-echocardiography program: evaluation of more than 1100 fetuses over 9 years

Implementation of a statewide, multisite fetal tele-echocardiography program: evaluation of more than 1100 fetuses over 9 years. Bolin EH, Collins RT 2nd, Best TH, Zakaria D, Lang SM, Boushka MG, Renno MS, Heil LL, Lowery CL, Bornemeier RA.J Perinatol. 2020 May 7. doi: 10.1038/s41372-020-0677-2. Online ahead of print. PMID: 32382116   Take Home Points:   Fetal tele-echo identified all types of CHD with a sensitivity of 74% and specificity of 97%. For ductal dependent lesions, sensitivity and specificity were 100%. With an experienced sonographer willing to travel, fetal tele-echo may be a viable option for more remote locales.     Commentary from Dr. Jared Hershenson (Greater Washington DC), section editor of Pediatric Cardiology Journal Watch: This was a study of fetal tele-echo (FTE) on 1164 fetuses in 6 satellite sites in Arkansas. The main campus is located centrally in the state, and they opened 6 offices throughout the state, many over 100-150 miles away. All studies were interpreted in real time by a fetal cardiologist as they were transmitted over a broadband IP network. Most of the studies were performed by a single sonographer with 20+ years experience. A positive study, defined as whether a postnatal echo was recommended (excluding a normal FTE in a poorly controlled diabetic mother) prompted a next available referral to the main campus with (in-person) face to face consultation with a pediatric cardiologist. FTE was not recommended in those with a high risk of carrying a fetus with an arrhythmia or structural heart disease (e.g. suspected cardiac abnormality or arrhythmia on OB ultrasound or hydrops) and these patients were initially referred to the main campus.   Table 1 shows the population characteristics. 1086 FTEs were normal and 78 abnormal. There were 15 false negative studies, but only 2 of those required cardiac intervention in the first 6 months of life. Both were perimembranous VSDs. There were 36 false positives of which the authors state were mostly small VSDs that may have closed prior to delivery. Of the 42 true positives, 18 required intervention in the first 6 months of life. This resulted in 74% sensitivity and 97% specificity. When subanalyzing ductal dependent lesions, FTE was 100% sensitive and 100% specific. With neonatal intervention within the first 6 months, FTE was 91% sensitive and 100% specific. See table 2. There was 1 patient who had a normal FTE, but subsequently developed flail TV and functional PV atresia; however since the disease developed after FTE, the case was not included in the analysis.   Per the authors, this was the largest study of FTE in terms of number of patients and sites. Previous studies have also shown good accuracy of FTE as well as community acceptance and patient preference of local FTE instead of traveling to quite distant sites. Additionally, there may be some economic benefits to patients and empowerment of local providers. The authors did not specifically discuss delivery planning based on FTE which would have been helpful given the variations in regional and state-wide hospital systems and medical transport. They showed an increase in rate of prenatal detection of CHD as well as financial benefit with implementation of the FTE program.   There were a few caveats. First 26% of abnormal FTEs were lost to follow up, which is quite high and concerning. The authors state that none of these cases were ductal dependent lesions. Additionally, the feasibility of the program most likely hinges on the experience of the sonographer; however, the studies were reviewed in real-time and theoretically, discussion and requests for more/different views could be done before the patient left. Based on the data, I would wonder if real-time review is actually necessary; this would result in even greater cost-effectiveness and financial benefit and likely be more applicable nation-wide or even world-wide.      

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Skeletal muscle index determined by bioelectrical impedance analysis is a determinant of exercise capacity and a prognostic predictor in patients with congenital heart disease

Skeletal muscle index determined by bioelectrical impedance analysis is a determinant of exercise capacity and a prognostic predictor in patients with congenital heart disease.   Sato M, Inai K, Asagai S, Harada G, Shimada E, Sugiyama H.J Cardiol. 2020 May...

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Modified Lung Ultrasound Examinations in Assessment and Monitoring of Positive End-Expiratory Pressure-Induced Lung Reaeration in Young Children With Congenital Heart Disease Under General Anesthesia.

Modified Lung Ultrasound Examinations in Assessment and Monitoring of Positive End-Expiratory Pressure-Induced Lung Reaeration in Young Children With Congenital Heart Disease Under General Anesthesia. Wu L, Hou Q, Bai J, Zhang J, Sun L, Tan R, Zhang M, Zheng J....

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