Biggs Kelly, Ouellette-Kuntz Helene, Griffiths Rebecca, Hansford Rebecca, Hallet Julie, Kelly Christine, Decker Kathleen, Dawe David E, Shooshtari Shahin, Brownell Marni, Turner Donna, Cobigo Virginie, Mahar Alyson
Department of Public Health Sciences, Queen's University, Kingston, Ontario, Canada.
ICES, Ontario, Canada.
Cancer Med. 2025 Jan;14(1):e70579. doi: 10.1002/cam4.70579.
Adults with intellectual or developmental disability (IDD) are at higher risk for incomplete cancer staging.
To compare unknown stage data between those with and without IDD.
We used the Ontario Cancer Registry linked to administrative health data between 2007 and 2019.
Adults with IDD diagnosed with breast, colorectal, and lung cancer were 1.94 (95% CI 1.52-2.47), 1.90 (95% CI 1.63-2.21), and 2.17 (95% CI 1.86-2.54) times more likely to have unknown cancer stage at diagnosis, relative to those without IDD.
The absence of stage data has person-level and population-level implications. At the individual level, if stage data are not simply missing from the registry but reflect incomplete or absent diagnostic or staging procedures, this may represent barriers for adults with IDD in receiving curative treatment. At the population level, research using inaccurate or incomplete stage data may lead to unrepresentative health and social system policy decisions.
A better understanding of the cancer diagnostic interval for adults with IDD is needed to develop interventions.
患有智力或发育障碍（IDD）的成年人癌症分期不完整的风险更高。
比较有无IDD的人群中癌症分期未知的数据。
我们使用了安大略癌症登记处与2007年至2019年期间的行政卫生数据相链接的数据。
与没有IDD的成年人相比，被诊断患有乳腺癌、结直肠癌和肺癌的IDD成年人在诊断时癌症分期未知的可能性分别高出1.94倍（95%置信区间1.52 - 2.47）、1.90倍（95%置信区间1.63 - 2.21）和2.17倍（95%置信区间1.86 - 2.54）。
分期数据的缺失具有个人层面和人群层面的影响。在个体层面，如果登记处缺少分期数据并非仅仅是数据缺失，而是反映了诊断或分期程序不完整或缺失，这可能对患有IDD的成年人接受根治性治疗构成障碍。在人群层面，使用不准确或不完整的分期数据进行研究可能导致不具代表性的卫生和社会系统政策决策。
需要更好地了解患有IDD的成年人的癌症诊断间隔，以制定干预措施。
