Breast Cancer Screening Among Women With Intellectual Disability in Denmark

Abstract

ImportanceBreast cancer–specific mortality is increased among women with intellectual disability (ID), and knowledge about participation in breast cancer screening in this group is needed.ObjectiveTo examine participation in the Danish national breast cancer screening program among women with ID compared with women without ID.Design, Setting, and ParticipantsThis dynamic population-based cohort study assessed participation in the Danish national breast cancer screening program initiated in 2007, targeting women aged 50 to 69 years with a screening interval of 2 years. In all, 6357 women with ID born between 1941 and 1967 and eligible for the screening program were identified in national registers. Women entered the study between January 1, 2007, and December 31, 2017. Subsequently, 273 women were excluded due to a history of carcinoma in situ or breast cancer, and 489 due to registration errors in registers. Each woman was individually age-matched with 10 women without ID (reference group). All women were followed up until March 31, 2021, or censoring (due to death, carcinoma in situ, or breast cancer). Data were analyzed from December 1, 2021, to June 31, 2022.ExposuresIntellectual disability was defined as being registered with an ID diagnosis or a diagnosis most likely leading to ID or residing at an institution for persons with ID.Main Outcomes and MeasuresParticipation in breast cancer screening (fully, partly, and never).ResultsA total of 5595 women with ID and 49 423 age-matched women in the reference group were included in the analysis. Of these, 2747 women with ID (49%) and 24 723 in the reference group (50%) were 50 years of age at study entry; for those older than 50 years, the median age was 51 years (IQR, 50-58 years) in both groups. In all, 1425 women with ID (25%) were fully screened according to guidelines for the Danish breast cancer screening program compared with 30 480 women in the reference group (62%). Women with ID had nearly 5 times higher odds of never being screened compared with the reference group (odds ratio, 4.90 [95% CI, 4.60-5.22]). In all, 2498 women with ID (45%) and 6573 in the reference group (13%) were never screened. The proportion of never-screened women increased with severity of ID, from 834 of 2287 (36%) among women with mild ID to 173 of 212 (82%) among women with profound ID.Conclusions and RelevanceThe findings of this cohort study suggest that women with ID are markedly less likely to participate in breast cancer screening compared with women without ID. These findings further suggest a need for tailored guidelines and approaches for breast cancer screening in this group of women.

Cancer risks related to intellectual disabilities: A systematic review

“…The need for changes within the cancer screening programs, are also demonstrated by other studies, focusing on participation and outcomes of screening programs among the ID population. 78 , 79 , 80 …”

Non-participation in breast screening in Denmark: Sociodemographic determinants

“…A targeted investigation of all women in Denmark diagnosed with intellectual disabilities showed a more than ve-fold OR for non-participation in breast screening in the patients compared with age-matched controls [17]. Breast cancer survivors are known to have a lifelong increased risk of recurrent disease and from 2018 onwards they were invited to screening up to the age of 79 years.…”

Krebserkrankungen bei Menschen mit einer Intelligenzminderung in Deutschland: Prävalenzen, Genetik und Versorgungslage

“…Selbst die Durchführung allgemein empfohlener Früherkennungsmaßnahmen wie Darmkrebsvorsorge, gynäkologische Vorsorge oder Hautkrebsscreening kann bei Menschen mit kognitiver Beeinträchtigung eine besondere Herausforderung darstellen. Mehrere Studien aus verschiedenen Ländern weisen eine deutlich reduzierte Inanspruchnahme der allgemein empfohlenen Krebsfrüherkennungsmaßnahmen am Beispiel des Brustkrebses in dieser Patientengruppe nach [ 37 – 39 ]. Dies passt zur Analyse ambulanter Abrechnungs- und Arzneiverordnungsdaten aus Deutschland aus dem Jahr 2018, die zeigten, dass 36 % der Menschen mit kognitiver Beeinträchtigung keine spezialisierte Facharztbehandlung in Anspruch nahmen [ 40 ].…”