ArticleJournal of the American Heart Association2023
Examining the Real-Life Journey of Individuals and Families Affected by Single-Ventricle Congenital Heart Disease.
Article in Journal of the American Heart Association, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
7 citing papers in PubMed, 10 citations in OpenAlex.
- Involving Families in Cardiac Care Through Remote Patient and Family Management: Focus Group and Journey Mapping Study.JMIR cardio · 2026Article
- Demand analysis of knowledge regarding cardiac rehabilitation among parents of children with congenital heart disease after surgery based on the Kano model.BMC pediatrics · 2026Article
- End-of-Life Care for Infants and Children with Single Ventricle Anatomy.Pediatric cardiology · 2026Article
- Family caregiver frailty in adult congenital heart disease is overlooked: A call to action.International journal of cardiology. Congenital heart disease · 2025Article
- Nurse-guided Mobile Health Care Program to Reduce Emotional Distress Experienced by Parents of Infants Prenatally Diagnosed with Critical Congenital Heart Disease: A Pilot Study.Progress in pediatric cardiology · 2024Article
- Discovery and functional investigation ofAmerican journal of translational research · 2024Article
- Discovery ofAmerican journal of translational research · 2024Article
Corrections and comments
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Authors and funding
20 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background The lifetime journey of patients with single-ventricle congenital heart disease is characterized by long-term challenges that are incompletely understood and still unfolding. Health care redesign requires a thorough understanding of this journey to create and implement solutions that improve outcomes. This study maps the lifetime journey of individuals with single-ventricle congenital heart disease and their families, identifies the most meaningful outcomes to them, and defines significant challenges in the journey. Methods and Results This qualitative research study involved experience group sessions and 1:1 interviews of patients, parents, siblings, partners, and stakeholders. Journey maps were created. The most meaningful outcomes to patients and parents and significant gaps in care were identified across the life journey. A total of 142 participants from 79 families and 28 stakeholders were included. Lifelong and life-stage specific journey maps were created. The most meaningful outcomes to patients and parents were identified and categorized using a "
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.