Ovarian Cancer in Women with Intellectual Disability: Current Data

TL;DR

Ovarian cancer in women with intellectual disabilities occurs at similar rates as in the general population but is often diagnosed at a later stage.

Contribution

The study provides new insights into the age distribution and diagnostic challenges of ovarian cancer in women with intellectual disabilities.

Findings

Ovarian cancers in adult women with intellectual disabilities occurred 13 years earlier than in the general population.

Diagnosis is more complicated in women with intellectual disabilities due to communication challenges and unusual symptom expression.

Abstract

This article reviews knowledge of ovarian cancer in women with intellectual disabilities. It also evaluates the frequency of this cancer in the department of Hérault in the south of France, which has a cancer registration. Surveys carried out in the general population and in institutions housing women with intellectual disabilities as well as the Hérault Cancer Registry suggest that the frequency of ovarian cancers is similar in women with intellectual disabilities to that in the general population. The survey in Hérault, close to reality because based on a well-defined population, does not find ovarian cancers before the age of 20 and only cancers in adult women with intellectual disabilities. In this collection, ovarian cancers in adult women with intellectual disabilities occurred 13 years earlier (55 years instead of 63 years) than in women without intellectual disabilities. They were discovered at a more advanced stage, which reduces the chances of recovery. It is necessary to keep in mind the risk of earlier ovarian cancer during the medical follow-up of women who have an intellectual disability.

Objective: We evaluate ovarian cancer (OC) in women with intellectual disability (ID). Methods: We reviewed the literature and added personal observations. The literature search included data from epidemiological studies on cancer incidence and mortality, institutional experiences, and case reports. We also used data from the Hérault Tumor Registry (HTR) in southern France. Results: A total of 72 articles met the inclusion criteria, which included 41 cases of OC. The review yielded 29 (74%) germ cell tumors, mainly in girls and young women, and only 4 (10%) ovarian carcinomas, all in adult women. In contrast, the HTR contained six cases of OC and one borderline tumor in adult women with ID aged > 45 years, but no cancer in children and adolescents with ID. These OC cases in adults were discovered at an advanced stage. We found that symptoms revealing OC in women with ID do not differ from those in the general population. However, diagnosis is more complicated in women with ID because they do not communicate easily and may express pain and unease in an unusual way, often through behavioral changes. Conclusion: OC could be as frequent in women with ID as in the general population and discovered at a late stage. The literature review indicates that girls and adolescents with ID develop mainly germ cell OC, and few carcinomas have been reported in women with ID. In contrast, the HTR was similar to the general population, with carcinomas in women with ID and no OC in children with ID.

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