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Loss to specialist follow-up in congenital heart disease; out of sight, out of mind

OBJECTIVE: To evaluate the scale and clinical importance of loss to follow-up of past patients with serious congenital heart disease, using a common malformation as an example. To better understand the antecedents of loss to specialist follow-up and patients’ attitudes to returning. DESIGN: Cohort s...

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Autores principales: Wray, Jo, Frigiola, Alessandra, Bull, Catherine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2013
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3595142/
https://www.ncbi.nlm.nih.gov/pubmed/23257171
http://dx.doi.org/10.1136/heartjnl-2012-302831
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author Wray, Jo
Frigiola, Alessandra
Bull, Catherine
author_facet Wray, Jo
Frigiola, Alessandra
Bull, Catherine
author_sort Wray, Jo
collection PubMed
description OBJECTIVE: To evaluate the scale and clinical importance of loss to follow-up of past patients with serious congenital heart disease, using a common malformation as an example. To better understand the antecedents of loss to specialist follow-up and patients’ attitudes to returning. DESIGN: Cohort study using NHS number functionality. Content and thematic analysis of telephone interviews of subset contacted after loss to follow-up. PATIENTS, INTERVENTION AND SETTING: Longitudinal follow-up of complete consecutive list of all 1085 UK patients with repair of tetralogy of Fallot from single institution 1964–2009. MAIN OUTCOME MEASURES: Survival, freedom from late pulmonary valve replacement, loss to specialist follow-up, shortfall in late surgical revisions related to loss to follow-up. Patients’ narrative about loss to follow-up. RESULTS: 216 (24%) of patients known to be currently alive appear not to be registered with specialist clinics; some are seen in general cardiology clinics. Their median age is 32 years and median duration of loss to follow-up is 22 years; most had been lost before Adult Congenital services had been consolidated in their present form. 48% of the late deaths to date have occurred in patients not under specialist follow-up. None of those lost to specialist follow-up has had secondary pulmonary valve replacement while 188 patients under specialist care have. Patients lost to specialist follow-up who were contacted by telephone had no knowledge of its availability. CONCLUSIONS: Loss to specialist follow-up, typically originating many years ago, impacts patient management.
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spelling pubmed-35951422013-03-14 Loss to specialist follow-up in congenital heart disease; out of sight, out of mind Wray, Jo Frigiola, Alessandra Bull, Catherine Heart Congenital Heart Disease OBJECTIVE: To evaluate the scale and clinical importance of loss to follow-up of past patients with serious congenital heart disease, using a common malformation as an example. To better understand the antecedents of loss to specialist follow-up and patients’ attitudes to returning. DESIGN: Cohort study using NHS number functionality. Content and thematic analysis of telephone interviews of subset contacted after loss to follow-up. PATIENTS, INTERVENTION AND SETTING: Longitudinal follow-up of complete consecutive list of all 1085 UK patients with repair of tetralogy of Fallot from single institution 1964–2009. MAIN OUTCOME MEASURES: Survival, freedom from late pulmonary valve replacement, loss to specialist follow-up, shortfall in late surgical revisions related to loss to follow-up. Patients’ narrative about loss to follow-up. RESULTS: 216 (24%) of patients known to be currently alive appear not to be registered with specialist clinics; some are seen in general cardiology clinics. Their median age is 32 years and median duration of loss to follow-up is 22 years; most had been lost before Adult Congenital services had been consolidated in their present form. 48% of the late deaths to date have occurred in patients not under specialist follow-up. None of those lost to specialist follow-up has had secondary pulmonary valve replacement while 188 patients under specialist care have. Patients lost to specialist follow-up who were contacted by telephone had no knowledge of its availability. CONCLUSIONS: Loss to specialist follow-up, typically originating many years ago, impacts patient management. BMJ Publishing Group 2013-04-01 2013-02-13 /pmc/articles/PMC3595142/ /pubmed/23257171 http://dx.doi.org/10.1136/heartjnl-2012-302831 Text en Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/3.0/ and http://creativecommons.org/licenses/by-nc/3.0/legalcode
spellingShingle Congenital Heart Disease
Wray, Jo
Frigiola, Alessandra
Bull, Catherine
Loss to specialist follow-up in congenital heart disease; out of sight, out of mind
title Loss to specialist follow-up in congenital heart disease; out of sight, out of mind
title_full Loss to specialist follow-up in congenital heart disease; out of sight, out of mind
title_fullStr Loss to specialist follow-up in congenital heart disease; out of sight, out of mind
title_full_unstemmed Loss to specialist follow-up in congenital heart disease; out of sight, out of mind
title_short Loss to specialist follow-up in congenital heart disease; out of sight, out of mind
title_sort loss to specialist follow-up in congenital heart disease; out of sight, out of mind
topic Congenital Heart Disease
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3595142/
https://www.ncbi.nlm.nih.gov/pubmed/23257171
http://dx.doi.org/10.1136/heartjnl-2012-302831
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