FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W4321455441> ?p ?o ?g. }

• W4321455441 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 capability (doing the things in life you want to), comfort (experience of physical/emotional pain/distress), and calm (experiencing health care with the least impact on daily life) framework. Gaps in care were identified and classified into areas of ineffective communication, lack of seamless transitions, lack of comprehensive support, structural deficiencies, and insufficient education. Conclusions There are significant gaps in care during the lifelong journey of individuals with single-ventricle congenital heart disease and their families. A thorough understanding of this journey is a critical first step in developing initiatives to redesign care around their needs and priorities. This approach can be used for people with other forms of congenital heart disease and other chronic conditions. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT04613934." @default.
• W4321455441 created "2023-02-22" @default.
• W4321455441 creator A5002938900 @default.
• W4321455441 creator A5009479754 @default.
• W4321455441 creator A5011385596 @default.
• W4321455441 creator A5011831440 @default.
• W4321455441 creator A5016539326 @default.
• W4321455441 creator A5024793606 @default.
• W4321455441 creator A5026835727 @default.
• W4321455441 creator A5039341106 @default.
• W4321455441 creator A5054449239 @default.
• W4321455441 creator A5057832392 @default.
• W4321455441 creator A5059181456 @default.
• W4321455441 creator A5066622123 @default.
• W4321455441 creator A5068820615 @default.
• W4321455441 creator A5072172713 @default.
• W4321455441 creator A5074097987 @default.
• W4321455441 creator A5080438515 @default.
• W4321455441 creator A5080515066 @default.
• W4321455441 creator A5088175715 @default.
• W4321455441 creator A5090153960 @default.
• W4321455441 creator A5090266522 @default.
• W4321455441 date "2023-03-07" @default.
• W4321455441 modified "2023-09-29" @default.
• W4321455441 title "Examining the Real‐Life Journey of Individuals and Families Affected by Single‐Ventricle Congenital Heart Disease" @default.
• W4321455441 cites W1832517437 @default.
• W4321455441 cites W1834422918 @default.
• W4321455441 cites W1962894711 @default.
• W4321455441 cites W1969222270 @default.
• W4321455441 cites W1985318451 @default.
• W4321455441 cites W2011715079 @default.
• W4321455441 cites W2019352718 @default.
• W4321455441 cites W2022828210 @default.
• W4321455441 cites W2076709696 @default.
• W4321455441 cites W2085379039 @default.
• W4321455441 cites W2107916079 @default.
• W4321455441 cites W2122256666 @default.
• W4321455441 cites W2142333882 @default.
• W4321455441 cites W2160022259 @default.
• W4321455441 cites W2312529336 @default.
• W4321455441 cites W2319336236 @default.
• W4321455441 cites W2566289023 @default.
• W4321455441 cites W2584706679 @default.
• W4321455441 cites W2783574971 @default.
• W4321455441 cites W2785473924 @default.
• W4321455441 cites W2793622718 @default.
• W4321455441 cites W2884262569 @default.
• W4321455441 cites W2884738983 @default.
• W4321455441 cites W2908722282 @default.
• W4321455441 cites W2916095951 @default.
• W4321455441 cites W2982313369 @default.
• W4321455441 cites W2996476125 @default.
• W4321455441 cites W2998418934 @default.
• W4321455441 cites W3015581468 @default.
• W4321455441 cites W3108391267 @default.
• W4321455441 cites W3159214339 @default.
• W4321455441 doi "https://doi.org/10.1161/jaha.122.027556" @default.
• W4321455441 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/36802928" @default.
• W4321455441 hasPublicationYear "2023" @default.
• W4321455441 type Work @default.
• W4321455441 citedByCount "1" @default.
• W4321455441 countsByYear W43214554412023 @default.
• W4321455441 crossrefType "journal-article" @default.
• W4321455441 hasAuthorship W4321455441A5002938900 @default.
• W4321455441 hasAuthorship W4321455441A5009479754 @default.
• W4321455441 hasAuthorship W4321455441A5011385596 @default.
• W4321455441 hasAuthorship W4321455441A5011831440 @default.
• W4321455441 hasAuthorship W4321455441A5016539326 @default.
• W4321455441 hasAuthorship W4321455441A5024793606 @default.
• W4321455441 hasAuthorship W4321455441A5026835727 @default.
• W4321455441 hasAuthorship W4321455441A5039341106 @default.
• W4321455441 hasAuthorship W4321455441A5054449239 @default.
• W4321455441 hasAuthorship W4321455441A5057832392 @default.
• W4321455441 hasAuthorship W4321455441A5059181456 @default.
• W4321455441 hasAuthorship W4321455441A5066622123 @default.
• W4321455441 hasAuthorship W4321455441A5068820615 @default.
• W4321455441 hasAuthorship W4321455441A5072172713 @default.
• W4321455441 hasAuthorship W4321455441A5074097987 @default.
• W4321455441 hasAuthorship W4321455441A5080438515 @default.
• W4321455441 hasAuthorship W4321455441A5080515066 @default.
• W4321455441 hasAuthorship W4321455441A5088175715 @default.
• W4321455441 hasAuthorship W4321455441A5090153960 @default.
• W4321455441 hasAuthorship W4321455441A5090266522 @default.
• W4321455441 hasBestOaLocation W43214554411 @default.
• W4321455441 hasConcept C126322002 @default.
• W4321455441 hasConcept C139265228 @default.
• W4321455441 hasConcept C144024400 @default.
• W4321455441 hasConcept C159110408 @default.
• W4321455441 hasConcept C160735492 @default.
• W4321455441 hasConcept C162324750 @default.
• W4321455441 hasConcept C164705383 @default.
• W4321455441 hasConcept C190248442 @default.
• W4321455441 hasConcept C2779134260 @default.
• W4321455441 hasConcept C2780074459 @default.
• W4321455441 hasConcept C36289849 @default.
• W4321455441 hasConcept C50522688 @default.
• W4321455441 hasConcept C70410870 @default.
• W4321455441 hasConcept C71924100 @default.
• W4321455441 hasConcept C74909509 @default.
• W4321455441 hasConceptScore W4321455441C126322002 @default.

• next