Incidence and survival of uveal melanoma in Northern Ireland: how incomplete data can skew results in rare cancers.
Journal
Eye (London, England)
ISSN: 1476-5454
Titre abrégé: Eye (Lond)
Pays: England
ID NLM: 8703986
Informations de publication
Date de publication:
08 2023
08 2023
Historique:
received:
17
11
2021
accepted:
02
12
2022
revised:
04
11
2022
pmc-release:
01
08
2024
medline:
4
8
2023
pubmed:
10
12
2022
entrez:
9
12
2022
Statut:
ppublish
Résumé
The majority of Northern Irish uveal melanoma (UM) patients are diagnosed in Sheffield. This study aims to present incidence and survival outcomes for UM patients from Northern Ireland (NI). Collaborative retrospective study between Sheffield and Northern Ireland Cancer Registry (NICR). For UM cases not on both databases, outcomes and survival rates (via Kaplan-Meier analysis) were compared. Anonymised NICR data were used to calculate whole-population incidence of UM for NI. In total, 161 patients from NI were diagnosed in Sheffield, 90 of which were not registered with NICR at the start of this study. Data-omissions were not consistent across patient groups, leading to significant differences between those patients registered and those not. Registered patients had an all-cause 5-year survival rate of only 68.9% compared to 92.5% of those not registered (p < 0.01) and were >17x more likely to have systemic metastases than those not registered (p < 0·001). Following rectification of data-omissions, the European age-standardised incidence rate of UM for NI was 8·6 per million. This study illustrates the impact of incomplete population-wide data, serving as a real-world lesson in case-identification bias. Rare cancers are at higher risk of omission due to systemic failures as the small numbers involved are not detected by system-wide validation procedures. Following this study, data-transfer agreements between England and NI were actioned, preventing future data-omissions. We present survival and incidence data for UM in NI for the first time, showing the incidence is amongst the highest in Europe, with good survival rates.
Sections du résumé
BACKGROUND
The majority of Northern Irish uveal melanoma (UM) patients are diagnosed in Sheffield. This study aims to present incidence and survival outcomes for UM patients from Northern Ireland (NI).
METHODS
Collaborative retrospective study between Sheffield and Northern Ireland Cancer Registry (NICR). For UM cases not on both databases, outcomes and survival rates (via Kaplan-Meier analysis) were compared. Anonymised NICR data were used to calculate whole-population incidence of UM for NI.
RESULTS
In total, 161 patients from NI were diagnosed in Sheffield, 90 of which were not registered with NICR at the start of this study. Data-omissions were not consistent across patient groups, leading to significant differences between those patients registered and those not. Registered patients had an all-cause 5-year survival rate of only 68.9% compared to 92.5% of those not registered (p < 0.01) and were >17x more likely to have systemic metastases than those not registered (p < 0·001). Following rectification of data-omissions, the European age-standardised incidence rate of UM for NI was 8·6 per million.
CONCLUSIONS
This study illustrates the impact of incomplete population-wide data, serving as a real-world lesson in case-identification bias. Rare cancers are at higher risk of omission due to systemic failures as the small numbers involved are not detected by system-wide validation procedures. Following this study, data-transfer agreements between England and NI were actioned, preventing future data-omissions. We present survival and incidence data for UM in NI for the first time, showing the incidence is amongst the highest in Europe, with good survival rates.
Identifiants
pubmed: 36494430
doi: 10.1038/s41433-022-02352-4
pii: 10.1038/s41433-022-02352-4
pmc: PMC10397225
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
2454-2460Informations de copyright
© 2022. The Author(s), under exclusive licence to The Royal College of Ophthalmologists.
Références
Melanoma Res. 2022 Apr 1;32(2):120-123
pubmed: 35152255
Eur J Cancer. 2015 Nov;51(16):2404-12
pubmed: 26278648
Br J Ophthalmol. 2022 Apr;106(4):510-517
pubmed: 33452185
Ocul Oncol Pathol. 2018 Apr;4(3):145-151
pubmed: 29765944
Cancer Epidemiol. 2015 Jun;39(3):401-4
pubmed: 25770641
BMJ. 2010 Aug 11;341:c4112
pubmed: 20702551
Ophthalmology. 2003 May;110(5):962-5
pubmed: 12750098
Eye (Lond). 2017 Feb;31(2):241-257
pubmed: 27911450
Arch Ophthalmol. 2008 Oct;126(10):1413-8
pubmed: 18852420
Prog Retin Eye Res. 2022 Sep;90:101041
pubmed: 34999237
Sci Rep. 2017 Dec 8;7(1):17199
pubmed: 29222464
Int J Cancer. 2003 May 20;105(1):117-22
pubmed: 12672041
Int J Cancer. 2005 Mar 10;114(1):114-23
pubmed: 15523698
Eur J Cancer. 2007 Mar;43(5):909-13
pubmed: 17300929
Ocul Oncol Pathol. 2019 Apr;5(3):195-204
pubmed: 31049328
Ophthalmology. 2007 Dec;114(12):2309-15
pubmed: 17498805
Int J Cancer. 1995 May 4;61(3):291-5
pubmed: 7729936