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Bokhari SFH, Faizan Sattar SM, Mehboob U, Umais M, Ahmad M, Malik A, Bakht D, Iqbal A, Dost W. Advancements in prenatal diagnosis and management of hypoplastic left heart syndrome: A multidisciplinary approach and future directions. World J Cardiol 2025; 17:103668. [PMID: 40161566 PMCID: PMC11947948 DOI: 10.4330/wjc.v17.i3.103668] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/28/2024] [Revised: 02/12/2025] [Accepted: 02/27/2025] [Indexed: 03/21/2025] Open
Abstract
Hypoplastic left heart syndrome is a severe congenital defect involving underdeveloped left-sided cardiac structures, leading to significant mortality and morbidity. Prenatal diagnosis using fetal ultrasound and echocardiography enables early detection, family counseling, and improved clinical decision-making. Advanced prenatal interventions, such as fetal aortic valvuloplasty and atrial septostomy, show promise but require careful patient selection. A multidisciplinary approach involving obstetricians, neonatologists, and pediatric cardiologists is vital for effective management. Future directions include refining imaging techniques, such as three-dimensional ultrasound, cardiovascular magnetic resonance imaging, and exploring bioengineering solutions, stem cell therapies, and genetic research. These advancements aim to improve therapeutic options and address current limitations, including transplant scarcity and postoperative complications. Although surgical innovations have improved survival rates, challenges remain, including neurological risks and long-term hemodynamic issues. Ongoing research and technological advancements are essential to enhance outcomes and quality of life for hypoplastic left heart syndrome patients.
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Affiliation(s)
| | - Syed M Faizan Sattar
- Department of Medicine and Surgery, King Edward Medical University, Lahore 54000, Punjab, Pakistan
| | - Umair Mehboob
- Department of Medicine and Surgery, King Edward Medical University, Lahore 54000, Punjab, Pakistan
| | - Muhammad Umais
- Department of Medicine and Surgery, King Edward Medical University, Lahore 54000, Punjab, Pakistan
| | - Muhammad Ahmad
- Department of Medicine and Surgery, King Edward Medical University, Lahore 54000, Punjab, Pakistan
| | - Ahmad Malik
- Department of Medicine and Surgery, King Edward Medical University, Lahore 54000, Punjab, Pakistan
| | - Danyal Bakht
- Department of Medicine and Surgery, King Edward Medical University, Lahore 54000, Punjab, Pakistan
| | - Asma Iqbal
- Department of Medicine and Surgery, King Edward Medical University, Lahore 54000, Punjab, Pakistan
| | - Wahidullah Dost
- Curative Medicine, Kabul University of Medical Sciences, Kabul 10001, Kābul, Afghanistan.
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2
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Schneider K, Müller J, Tissen-Diabaté T, Schleußner E. [Ethical Attitudes and Handling in Prenatal Conflict Situations - A Survey among Obstetricians and Prenatal Diagnosticians in Germany]. Z Geburtshilfe Neonatol 2024; 228:419-426. [PMID: 38253330 DOI: 10.1055/a-2217-9635] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/24/2024]
Abstract
OBJECTIVE Various studies have shown that belonging to a professional group has an influence on ethical attitudes. The aim of this study was to assess and compare the attitudes and approaches of obstetrical specialists and prenatal diagnosticians in prenatal conflict situations. METHODS Explorative cross-sectional online survey among tertiary perinatal care centers and prenatal diagnosticians with DEGUM Level II/III in Germany. The questionnaire included questions on ethical attitudes in the perinatal context and a case presentation of a fetal hypoplastic left heart syndrome. RESULTS The response rate was 57.1% (310/543). 55.5% of the respondents practiced both obstetrics and prenatal diagnostics, 24.5% exclusively prenatal diagnostics, and 14.2% purely obstetrics. 27% agreed with the statement "An uncertain prognosis justifies pregnancy termination". For complex fetal malformations joint interdisciplinary counseling was advocated by 98.3%. Addressing the option of postnatal palliative treatment in a case of a hypoplastic left heart syndrome was accepted by 84.3% across all professional groups, while mentioning fetocide was more frequently cited as an option by prenatal diagnosticians than by obstetricians (57.7% vs. 34.1%). CONCLUSION Interdisciplinary prenatal parental counseling in complex fetal malformations is uniformly advocated by prenatal diagnosticians and obstetricians in Germany. However, different ethical attitudes appear among specialists groups with regard to the option of termination of pregnancy.
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Affiliation(s)
- Katja Schneider
- Klinik für Neonatologie, Charité Universitätsmedizin Berlin, Berlin, Germany
| | - Johanna Müller
- Klinik für Geburtsmedizin, Universitätsklinikum Jena, Jena, Germany
| | - Tatjana Tissen-Diabaté
- Institut für Sozialmedizin, Epidemiologie und Gesundheitsökonomie, Charité Universitätsmedizin Berlin, Berlin, Germany
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Dandy S, Wittkowski A, Murray CD. Parents' experiences of receiving their child's diagnosis of congenital heart disease: A systematic review and meta-synthesis of the qualitative literature. Br J Health Psychol 2024; 29:351-378. [PMID: 37968248 DOI: 10.1111/bjhp.12703] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/03/2023] [Revised: 07/31/2023] [Accepted: 10/18/2023] [Indexed: 11/17/2023]
Abstract
PURPOSE This systematic review aimed to synthesize qualitative research on parents' psychological experiences following their child's diagnosis of congenital heart disease (CHD). METHODS A systematic search of six electronic databases (CINAHL, Embase, MEDLINE, PsycINFO, PubMed and Web of Science) was completed, inclusive of all years up to May 2022. Any included articles were synthesized using thematic synthesis and appraised using the Critical Appraisal Skills Programme Qualitative Checklist. RESULTS Twenty-six articles were included. Four main themes, and 11 subthemes, emerged from the synthesis. Theme 1 (unpreparedness for the diagnosis) concerned parents' shock, guilt and anger regarding the diagnosis. Theme 2 (the overwhelming reality of CHD) described parental fear about decision-making and the child's prognosis, and the influence of professionals on parents' well-being. Theme 3 (mourning multiple losses) detailed parents' sadness at losing their envisioned pregnancy, birth and parenthood experiences. Theme 4 (redefining hopes to reach an acceptance of CHD) described parents' adjustment to the diagnosis. CONCLUSIONS Receiving a child's CHD diagnosis was a uniquely challenging situation for parents. The findings provided insight into the emotions parents experienced and how they adjusted to the diagnosis psychologically. As parents' experiences were significantly influenced by their interactions with professionals, clinicians should offer compassion, validation and clear information throughout the diagnosis process.
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Almeida SLDM, Tuda LTS, Dias MB, de Carvalho LIA, Estevam TLL, Novelleto ALMT, Araujo Júnior E, da Rocha Amorim LA. Family Counseling after the Diagnosis of Congenital Heart Disease in the Fetus: Scoping Review. Healthcare (Basel) 2023; 11:2826. [PMID: 37957971 PMCID: PMC10647570 DOI: 10.3390/healthcare11212826] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/16/2023] [Revised: 10/15/2023] [Accepted: 10/24/2023] [Indexed: 11/15/2023] Open
Abstract
Congenital heart disease (CHD) is the leading cause of death from malformations in the first year of life and carries a significant burden to the family when the diagnosis is made in the prenatal period. We recognize the significance of family counseling following a fetal CHD diagnosis. However, we have observed that most research focuses on assessing the emotional state of family members rather than examining the counseling process itself. The objective of this study was to identify and summarize the findings in the literature on family counseling in cases of diagnosis of CHD during pregnancy, demonstrating gaps and suggesting future research on this topic. Eight databases were searched to review the literature on family counseling in cases of CHD diagnosis during pregnancy. A systematic search was conducted from September to October 2022. The descriptors were "congenital heart disease", "fetal heart", and "family counseling". The inclusion criteria were studies on counseling family members who received a diagnosis of CHD in the fetus (family counseling was defined as any health professional who advises mothers and fathers on the diagnosis of CHD during the gestational period), how the news is expressed to family members (including an explanation of CHD and questions about management and prognosis), empirical and qualitative studies, quantitative studies, no publication deadline, and any language. Out of the initial search of 3719 reports, 21 articles were included. Most were cross-sectional (11) and qualitative (9) studies, and all were from developed countries. The findings in the literature address the difficulties in effectively conducting family counseling, the strengths of family counseling to be effective, opportunities to generate effective counseling, and the main challenges in family counseling.
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Affiliation(s)
- Sophia Livas de Morais Almeida
- Postgraduate Program in Health Sciences, Medical School, Federal University of Amazonas (UFAM), Manaus 69067-005, AM, Brazil
| | | | | | | | - Thayla Lais Lima Estevam
- Postgraduate Program in Health Sciences, Medical School, Federal University of Amazonas (UFAM), Manaus 69067-005, AM, Brazil
| | | | - Edward Araujo Júnior
- Department of Obstetrics, Paulista School of Medicine, Federal University of São Paulo (EPM-UNIFESP), São Paulo 04023-062, SP, Brazil
- Medical School, Municipal University of São Caetano do Sul (USCS), São Caetano do Sul 09521-160, SP, Brazil
| | - Luciane Alves da Rocha Amorim
- Postgraduate Program in Health Sciences, Medical School, Federal University of Amazonas (UFAM), Manaus 69067-005, AM, Brazil
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5
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Schweiberger K, Harris KW, Kavanaugh-McHugh A, Soudi A, Arnold RM, Merlin JS, Kasparian NA, Chang JC. "I Just Want You to Hear That Term": Characterizing Language Used in Fetal Cardiology Consultations. J Cardiovasc Dev Dis 2023; 10:394. [PMID: 37754823 PMCID: PMC10531623 DOI: 10.3390/jcdd10090394] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/10/2023] [Revised: 09/05/2023] [Accepted: 09/07/2023] [Indexed: 09/28/2023] Open
Abstract
The way clinicians communicate with parents during pregnancy about congenital heart disease (CHD) can significantly influence parental understanding of and psychological response to the diagnosis. A necessary first step to improving communication used in fetal cardiology consultations is to understand and describe the language currently used, which this paper aims to do. Nineteen initial fetal cardiology consultations with parents were audio-recorded, transcribed verbatim, and coded by two independent coders. A codebook was inductively developed and applied to all transcripts. The finalized coding was used to characterize fetal cardiologists' language. We identified four discourse styles employed in fetal cardiology consultations: small talk, medical, plain, and person-centered. Plain language was used to define and emphasize the meaning of medical language. Person-centered language was used to emphasize the baby as a whole person. Each consultation included all four discourse styles, with plain and medical used most frequently. Person-centered was used less frequently and mostly occurred near the end of the encounters; whether this is the ideal balance of discourse styles is unknown. Clinicians also used person-centered language (as opposed to disease-centered language), which is recommended by medical societies. Future studies should investigate the ideal balance of discourse styles and the effects of clinician discourse styles on family outcomes, including parents' decision-making, psychological adjustment, and quality of life.
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Affiliation(s)
- Kelsey Schweiberger
- Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA;
| | - Kelly W. Harris
- Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA;
| | - Ann Kavanaugh-McHugh
- Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN 37232, USA;
| | - Abdesalam Soudi
- Department of Linguistics, University of Pittsburgh, Pittsburgh, PA 15260, USA;
| | - Robert M. Arnold
- Section of Palliative Care and Medical Ethics, Department of General Internal Medicine, Palliative Research Center, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA; (R.M.A.); (J.S.M.)
| | - Jessica S. Merlin
- Section of Palliative Care and Medical Ethics, Department of General Internal Medicine, Palliative Research Center, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA; (R.M.A.); (J.S.M.)
| | - Nadine A. Kasparian
- The Heart Institute, Cincinnati Children’s Hospital, Cincinnati, OH 45229, USA;
- Department of Pediatrics, College of Medine, University of Cincinnati, Cincinnati, OH 45267, USA
- Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children’s Hospital, Cincinnati, OH 45229, USA
| | - Judy C. Chang
- Department of Obstetrics, Gynecology, and Reproductive Sciences, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA;
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Blume ED, Kirsch R, Cousino MK, Walter JK, Steiner JM, Miller TA, Machado D, Peyton C, Bacha E, Morell E. Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association. Circ Cardiovasc Qual Outcomes 2023; 16:e000114. [PMID: 36633003 PMCID: PMC10472747 DOI: 10.1161/hcq.0000000000000114] [Citation(s) in RCA: 16] [Impact Index Per Article: 8.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/13/2023]
Abstract
AIM This summary from the American Heart Association provides guidance for the provision of primary and subspecialty palliative care in pediatric congenital and acquired heart disease. METHODS A comprehensive literature search was conducted from January 2010 to December 2021. Seminal articles published before January 2010 were also included in the review. Human subject studies and systematic reviews published in English in PubMed, ClinicalTrials.gov, and the Cochrane Collaboration were included. Structure: Although survival for pediatric congenital and acquired heart disease has tremendously improved in recent decades, morbidity and mortality risks remain for a subset of young people with heart disease, necessitating a role for palliative care. This scientific statement provides an evidence-based approach to the provision of primary and specialty palliative care for children with heart disease. Primary and specialty palliative care specific to pediatric heart disease is defined, and triggers for palliative care are outlined. Palliative care training in pediatric cardiology; diversity, equity, and inclusion considerations; and future research directions are discussed.
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Watkins S, Isichei O, Gentles TL, Brown R, Percival T, Sadler L, Gorinski R, Crengle S, Cloete E, de Laat MWM, Bloomfield FH, Ward K. What is Known About Critical Congenital Heart Disease Diagnosis and Management Experiences from the Perspectives of Family and Healthcare Providers? A Systematic Integrative Literature Review. Pediatr Cardiol 2023; 44:280-296. [PMID: 36125507 PMCID: PMC9895021 DOI: 10.1007/s00246-022-03006-8] [Citation(s) in RCA: 7] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/02/2022] [Accepted: 09/06/2022] [Indexed: 02/06/2023]
Abstract
The experience of diagnosis, decision-making and management in critical congenital heart disease is layered with complexity for both families and clinicians. We synthesise the current evidence regarding the family and healthcare provider experience of critical congenital heart disease diagnosis and management. A systematic integrative literature review was conducted by keyword search of online databases, MEDLINE (Ovid), PsycINFO, Cochrane, cumulative index to nursing and allied health literature (CINAHL Plus) and two journals, the Journal of Indigenous Research and Midwifery Journal from 1990. Inclusion and exclusion criteria were applied to search results with citation mining of final included papers to ensure completeness. Two researchers assessed study quality combining three tools. A third researcher reviewed papers where no consensus was reached. Data was coded and analysed in four phases resulting in final refined themes to summarise the findings. Of 1817 unique papers, 22 met the inclusion criteria. The overall quality of the included studies was generally good, apart from three of fair quality. There is little information on the experience of the healthcare provider. Thematic analysis identified three themes relating to the family experience: (1) The diagnosis and treatment of a critical congenital heart disease child significantly impacts parental health and wellbeing. (2) The way that healthcare and information is provided influences parental response and adaptation, and (3) parental responses and adaptation can be influenced by how and when support occurs. The experience of diagnosis and management of a critical congenital heart disease child is stressful and life-changing for families. Further research is needed into the experience of minority and socially deprived families, and of the healthcare provider, to inform potential interventions at the healthcare provider and institutional levels to improve family experience and support.
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Affiliation(s)
- S. Watkins
- Liggins Institute, The University of Auckland, Auckland, New Zealand
| | - O. Isichei
- Liggins Institute, The University of Auckland, Auckland, New Zealand
| | | | - R. Brown
- National Hauora Coalition, Auckland, New Zealand
| | - T. Percival
- Department of Paediatrics, The University of Auckland, Auckland, New Zealand
| | | | - R. Gorinski
- Heart Kids New Zealand, Tamariki Manawa Maia, Auckland, New Zealand
| | - S. Crengle
- Ngāi Tahu Māori Health Research Unit, Division of Health Sciences, University of Otago, Dunedin, New Zealand
| | - E. Cloete
- Te Whatu Ora, Christchurch, New Zealand
| | | | - F. H. Bloomfield
- Liggins Institute, The University of Auckland, Auckland, New Zealand
| | - K. Ward
- School of Nursing, The University of Auckland, Auckland, New Zealand
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8
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Lee FT, Sun L, Freud L, Seed M. A guide to prenatal counseling regarding neurodevelopment in congenital heart disease. Prenat Diagn 2022; 43:661-673. [PMID: 36575573 DOI: 10.1002/pd.6292] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/30/2022] [Revised: 12/07/2022] [Accepted: 12/17/2022] [Indexed: 12/29/2022]
Abstract
Advances in cardiac surgical techniques taking place over the past 50 years have resulted in the vast majority of children born with congenital cardiac malformations now surviving into adulthood. As the focus shifts from survival to the functional outcomes of our patients, it is increasingly being recognized that a significant proportion of patients undergoing infant cardiac repair experience adverse neurodevelopmental (ND) outcomes. The etiology of abnormal brain development in the setting of congenital heart disease is poorly understood, complex, and likely multifactorial. Furthermore, the efficacy of therapies available for the learning disabilities, attention deficit, and hyperactivity disorders and other ND deficits complicating congenital heart disease is currently uncertain. This situation presents a challenge for prenatal counseling as current antenatal testing does not usually provide prognostic information regarding the likely ND trajectories of individual patients. However, we believe it is important for parents to be informed about potential issues with child development when a new diagnosis of congenital heart disease is disclosed. Parents deserve a comprehensive and thoughtful approach to this subject, which conveys the uncertainties involved in predicting the severity of any developmental disorders encountered, while emphasizing the improvements in outcomes that have already been achieved in infants with congenital heart disease. A balanced approach to counseling should also discuss what local arrangements are in place for ND follow-up. This review presents an up-to-date overview of ND outcomes in patients with congenital heart disease, providing possible approaches to communicating this information to parents during prenatal counseling in a sensitive and accurate manner.
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Affiliation(s)
- Fu-Tsuen Lee
- Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.,Translational Medicine Program, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.,Department of Physiology, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
| | - Liqun Sun
- Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.,Translational Medicine Program, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada
| | - Lindsay Freud
- Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.,Translational Medicine Program, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada
| | - Mike Seed
- Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.,Translational Medicine Program, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.,Department of Physiology, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.,Department of Diagnostic Imaging, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada
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9
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Tacy TA, Kasparian NA, Karnik R, Geiger M, Sood E. Opportunities to enhance parental well-being during prenatal counseling for congenital heart disease. Semin Perinatol 2022; 46:151587. [PMID: 35461701 DOI: 10.1016/j.semperi.2022.151587] [Citation(s) in RCA: 14] [Impact Index Per Article: 4.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/18/2022]
Abstract
Prenatal diagnosis of congenital heart disease (CHD) can be a life-altering and traumatic event for expectant parents. Parental anxiety, depression, and traumatic stress are common following a prenatal cardiac diagnosis and if untreated, symptoms often persist long-term. During prenatal counseling, parents must try to manage psychological distress, navigate uncertainty, process complex medical information, and make high-stakes medical decisions for their unborn child and their family. Physicians must deliver the diagnosis, describe the expected perinatal management plan, discuss short and long-term prognoses and introduce elements of uncertainty that may exist for the particular diagnosis. Physican training in these important skills is highly variable and many in our field acknowledge the need for improved guidance on best practices for counseling and supporting parents during pregnancy and early parenthood after prenatal diagnosis, while also sustaining physicians' own emotional well-being. We describe these challenges and the opportunities that exist to improve the current state of prenatal counseling in CHD.
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Affiliation(s)
- Theresa A Tacy
- Department of Pediatrics, Division of Pediatric Cardiology, Lucile Packard Children's Hospital, Stanford University School of Medicine, Palo Alto, CA, USA.
| | - Nadine A Kasparian
- Center for Heart Disease and Mental Health, Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital and University of Cincinnati College of Medicine, Cincinnati, OU, USA
| | - Ruchika Karnik
- Department of Pediatrics, Yale School of Medicine, New Haven, CT, USA
| | - Miwa Geiger
- Department of Pediatrics, Division of Pediatric Cardiology, The Icahn School of Medicine at Mount Sinai, New York, NY, USA
| | - Erica Sood
- Nemours Cardiac Center, Alfred I. duPont Hospital for Children, Wilmington, Delaware; Department of Pediatrics, Thomas Jefferson University, Philadelphia, PA, USA
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10
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Crombag N, Ceulemans V, Debeer A, Russo F, Bollen B, Power B, Meijer F, Henrotte N, Depré K, Laurent J, Deprest J. Prenatal diagnosis of congenital diaphragmatic hernia: parental counselling and support needs. Prenat Diagn 2022; 42:387-397. [DOI: 10.1002/pd.6118] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/10/2022] [Revised: 02/15/2022] [Accepted: 02/16/2022] [Indexed: 11/09/2022]
Affiliation(s)
- Neeltje Crombag
- Department of Development and Regeneration cluster Woman and Child Biomedical Sciences Leuven Belgium
- Elizabeth Garrett Anderson Institute of Women's Health University College London London United Kingdom
| | - Vanessa Ceulemans
- Department of Development and Regeneration cluster Woman and Child Biomedical Sciences Leuven Belgium
| | - Anne Debeer
- Department of Development and Regeneration cluster Woman and Child Biomedical Sciences Leuven Belgium
- Neonatal Intensive Care Unit University Hospitals Leuven Leuven Belgium
| | - Francesca Russo
- Department of Development and Regeneration cluster Woman and Child Biomedical Sciences Leuven Belgium
- Elizabeth Garrett Anderson Institute of Women's Health University College London London United Kingdom
| | - Bieke Bollen
- Department of Development and Regeneration cluster Woman and Child Biomedical Sciences Leuven Belgium
- Neonatal Intensive Care Unit University Hospitals Leuven Leuven Belgium
| | | | | | - Nancy Henrotte
- Department of Obstetrics and Gynaecology Division Woman and Child University Hospitals Leuven Leuven Belgium
| | - Kathleen Depré
- Department of Obstetrics and Gynaecology Division Woman and Child University Hospitals Leuven Leuven Belgium
| | - Josefien Laurent
- Department of Obstetrics and Gynaecology Division Woman and Child University Hospitals Leuven Leuven Belgium
| | - Jan Deprest
- Department of Development and Regeneration cluster Woman and Child Biomedical Sciences Leuven Belgium
- Elizabeth Garrett Anderson Institute of Women's Health University College London London United Kingdom
- Department of Obstetrics and Gynaecology Division Woman and Child University Hospitals Leuven Leuven Belgium
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11
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Crombag N, Sacco A, Stocks B, De Vloo P, van der Merwe J, Gallagher K, David A, Marlow N, Deprest J. 'We did everything we could'- a qualitative study exploring the acceptability of maternal-fetal surgery for spina bifida to parents. Prenat Diagn 2021; 41:910-921. [PMID: 34228835 PMCID: PMC7613560 DOI: 10.1002/pd.5996] [Citation(s) in RCA: 16] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/30/2021] [Revised: 06/05/2021] [Accepted: 06/05/2021] [Indexed: 11/22/2022]
Abstract
Objective To explore the concepts and strategies parents employ when considering maternal-fetal surgery (MFS) as an option for the management of spina bifida (SB) in their fetus, and how this determines the acceptability of the intervention. Methods A two-centre interview study enrolling parents whose fetuses with SB were eligible for MFS. To assess differences in acceptability, parents opting for MFS (n = 24) were interviewed at three different moments in time: prior to the intervention, directly after the intervention and 3-6 months after birth. Parents opting for termination of pregnancy (n = 5) were interviewed only once. Themes were identified and organised in line with the framework of acceptability. Results To parents opting for MFS, the intervention was perceived as an opportunity that needed to be taken. Feelings of parental responsibility drove them to do anything in their power to improve their future child’s situation. Expectations seemed to be realistic yet were driven by hope for the best outcome. None expressed decisional regret at any stage, despite substantial impact and, at times, disappointing outcomes. For the small group of participants, who decided to opt for termination of pregnancy (TOP), MFS was not perceived as an intervention that substantially could improve the quality of their future child’s life. Conclusion Prospective parents opting for MFS were driven by their feelings of parental responsibility. They recognise the fetus as their future child and value information and care focusing on optimising the child’s future health. In the small group of parents opting for TOP, MFS was felt to offer insufficient certainty of substantial improvement in quality of life and the perceived severe impact of SB drove their decision to end the pregnancy.
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Affiliation(s)
- Neeltje Crombag
- Department of Development and Regeneration Cluster Woman and Child, Biomedical Sciences, KU Leuven, Leuven, Belgium.,Elizabeth Garrett Anderson Institute of Women's Health, University College London, London, UK
| | - Adalina Sacco
- Elizabeth Garrett Anderson Institute of Women's Health, University College London, London, UK
| | | | - Philippe De Vloo
- Department of Neurosurgery, University Hospitals Leuven, Leuven, Belgium
| | - Johannes van der Merwe
- Department of Development and Regeneration Cluster Woman and Child, Biomedical Sciences, KU Leuven, Leuven, Belgium.,Department of Obstetrics and Gynecology, Division Woman and Child, University Hospitals Leuven, Leuven, Belgium
| | - Katie Gallagher
- Elizabeth Garrett Anderson Institute of Women's Health, University College London, London, UK.,National Institutes for Health, University College London Hospitals Biomedical Research Centre, London, UK
| | - Anna David
- Department of Development and Regeneration Cluster Woman and Child, Biomedical Sciences, KU Leuven, Leuven, Belgium.,Elizabeth Garrett Anderson Institute of Women's Health, University College London, London, UK.,National Institutes for Health, University College London Hospitals Biomedical Research Centre, London, UK
| | - Neil Marlow
- Elizabeth Garrett Anderson Institute of Women's Health, University College London, London, UK.,National Institutes for Health, University College London Hospitals Biomedical Research Centre, London, UK
| | - Jan Deprest
- Department of Development and Regeneration Cluster Woman and Child, Biomedical Sciences, KU Leuven, Leuven, Belgium.,Elizabeth Garrett Anderson Institute of Women's Health, University College London, London, UK.,Department of Obstetrics and Gynecology, Division Woman and Child, University Hospitals Leuven, Leuven, Belgium
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12
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Bertaud S, Lloyd DFA, Sharland G, Razavi R, Bluebond-Langner M. The impact of prenatal counselling on mothers of surviving children with hypoplastic left heart syndrome: A qualitative interview study. Health Expect 2020; 23:1224-1230. [PMID: 32671929 PMCID: PMC7696135 DOI: 10.1111/hex.13103] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/24/2019] [Revised: 06/21/2020] [Accepted: 06/25/2020] [Indexed: 11/26/2022] Open
Abstract
Objective To explore the role of antenatal counselling in how parents make treatment decisions following an antenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Background Antenatal counselling is a critical part of patient management following a diagnosis of fetal congenital heart disease; however, there is a very limited evidence base examining how parents actually experience antenatal counselling and make decisions in this context. Methods Semi‐structured interviews were conducted with women who had received an antenatal diagnosis of HLHS. Interviews were digitally recorded, anonymised and transcribed verbatim. A thematic content analysis was performed using a constant comparative approach. Results Eight mothers of surviving children with HLHS were interviewed. Eight key themes emerged including new perspectives on how women receive antenatal counselling and how it affects their decision making. Three themes in particular are new to the literature: (a) Mothers of children with HLHS reported feelings of intense guilt that arose in the antenatal period around potentially causing the condition in their child. (b) For this group of women, recollections of perceived pessimism during antenatal counselling had a lasting impact. (c) Despite support from partners or extended family, women nevertheless experienced a strong sense that antenatal decision making was largely a ‘maternal’ responsibility. Conclusions When recounting their experiences of antenatal counselling, mothers of surviving children with HLHS offer new perspectives that can guide fetal cardiologists in how best to support their individual patients. Further research is needed to comprehensively understand the experience of prospective parents counselled for severe forms of fetal congenital heart disease.
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Affiliation(s)
- Sophie Bertaud
- Department of Imaging Sciences and Biomedical Engineering, King's College London, Guy's and St Thomas' Hospital, London, UK.,Louis Dundas Centre for Children's Palliative Care, UCL Great Ormond Street Institute of Child Health, London, UK
| | - David F A Lloyd
- Department of Congenital Heart Disease, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK
| | - Gurleen Sharland
- Department of Congenital Heart Disease, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK
| | - Reza Razavi
- Department of Congenital Heart Disease, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK
| | - Myra Bluebond-Langner
- Louis Dundas Centre for Children's Palliative Care, UCL Great Ormond Street Institute of Child Health, London, UK
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