Cargando…

A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports

Survival statistics, estimated using data collected by national cystic fibrosis (CF) patient registries, are used to inform the CF community and monitor survival of CF populations. Annual registry reports typically give the median age of survival, though different registries use different estimation...

Descripción completa

Detalles Bibliográficos
Autores principales: Keogh, Ruth H., Stanojevic, Sanja
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5885986/
https://www.ncbi.nlm.nih.gov/pubmed/29398488
http://dx.doi.org/10.1016/j.jcf.2017.11.014
_version_ 1783312067720118272
author Keogh, Ruth H.
Stanojevic, Sanja
author_facet Keogh, Ruth H.
Stanojevic, Sanja
author_sort Keogh, Ruth H.
collection PubMed
description Survival statistics, estimated using data collected by national cystic fibrosis (CF) patient registries, are used to inform the CF community and monitor survival of CF populations. Annual registry reports typically give the median age of survival, though different registries use different estimation approaches and terminology, which has created confusion for the community. In this article we explain how median age of survival is estimated, what its interpretation is, and what assumptions and limitations are involved. Information on survival from birth is less useful for individuals who have already reached a certain age and we propose use of conditional survivor curves to address this. We provide recommendations for CF registries with the aim of facilitating clear and consistent reporting of survival statistics. Our recommendations are illustrated using data from the UK Cystic Fibrosis Registry.
format Online
Article
Text
id pubmed-5885986
institution National Center for Biotechnology Information
language English
publishDate 2018
publisher Elsevier
record_format MEDLINE/PubMed
spelling pubmed-58859862018-04-06 A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports Keogh, Ruth H. Stanojevic, Sanja J Cyst Fibros Article Survival statistics, estimated using data collected by national cystic fibrosis (CF) patient registries, are used to inform the CF community and monitor survival of CF populations. Annual registry reports typically give the median age of survival, though different registries use different estimation approaches and terminology, which has created confusion for the community. In this article we explain how median age of survival is estimated, what its interpretation is, and what assumptions and limitations are involved. Information on survival from birth is less useful for individuals who have already reached a certain age and we propose use of conditional survivor curves to address this. We provide recommendations for CF registries with the aim of facilitating clear and consistent reporting of survival statistics. Our recommendations are illustrated using data from the UK Cystic Fibrosis Registry. Elsevier 2018-03 /pmc/articles/PMC5885986/ /pubmed/29398488 http://dx.doi.org/10.1016/j.jcf.2017.11.014 Text en © 2017 The Authors http://creativecommons.org/licenses/by/4.0/ This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Keogh, Ruth H.
Stanojevic, Sanja
A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports
title A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports
title_full A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports
title_fullStr A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports
title_full_unstemmed A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports
title_short A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports
title_sort guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5885986/
https://www.ncbi.nlm.nih.gov/pubmed/29398488
http://dx.doi.org/10.1016/j.jcf.2017.11.014
work_keys_str_mv AT keoghruthh aguidetointerpretingestimatedmedianageofsurvivalincysticfibrosispatientregistryreports
AT stanojevicsanja aguidetointerpretingestimatedmedianageofsurvivalincysticfibrosispatientregistryreports
AT keoghruthh guidetointerpretingestimatedmedianageofsurvivalincysticfibrosispatientregistryreports
AT stanojevicsanja guidetointerpretingestimatedmedianageofsurvivalincysticfibrosispatientregistryreports