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...
Autores principales: | , |
---|---|
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 |