Cancer Clinical Trial
Official title:
Awareness on Cancer in Persons With Intellectual Disabilities
Context People with intellectual disability (PWIDs), nearly 1,300,000 adults and children in
France, develop as many cancers as persons in the general population. However, their tumors
are different by their particular organ distribution, the age of onset, the biological
background (2,000 genetic conditions are associated with an intellectual disability) and
above all the unusual clinical presentation. These cancers are not well known from
physicians, carers and families, and often discovered late. A recent review of the
literature shows many inequalities in the prevention, monitoring, screening, diagnosis and
treatment of cancer in these patients. Currently, no population study on clinical features
and stage at diagnosis of cancer in PWIDs is available. No interventional research study has
been conducted on this subject.
Hypothesis Investigators hypothesize that inequalities in cancer care of PWIDs do not result
from a direct link between intellectual disability and cancer, but are related to diagnosis
difficulties of these tumors which are not well known, and to difficulties of communication
with these patients who do not express easily their symptoms, particularly pain.
The study will first evaluate characteristics of all cancers diagnosed in PWIDs in the department of Hérault (20,000 PWIDs) during the four-year period preceding the intervention. Investigators will cross the data of social network of PWIDs (CREAI Languedoc Roussillon) which covers nearly 90% of PWIDs living in this area, and the Hérault Cancer Registry. Second, during a two-year information program, physicians, mainly general practitioners, carers in and outside institutions, associations and families will be informed on cancer frequency, on cancer particularities and on cancer detection in PWIDs by the mean of documents, mails and e-mails, meetings and a website providing all available useful information on cancer in PWIDs. Third, characteristics of tumors observed during the three years after the beginning of the intervention will be statistically compared to the corresponding tumors before the intervention. This will be done especially for colon cancer and breast cancer using the TNM stage and the used therapeutic means. On the basis of the first part of the study, if a significant difference on stage at diagnosis and treatment is observed compared to the general population, other tumors will also be included in the comparison, if relevant. ;
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