There are few data on screening mammography in the U.S. among women with intellectual disabilities. These data indicate an overall rate of screening within the past 2 years of 53%. This is higher than other non-U.S. populations of women with intellectual disabilities, but much lower than the rate of 84.9% found in the general population in Massachusetts12
. These data show several individual and system-level variables positively associated with mammography in intellectually disabled women: living in 24-hour supported residential settings, having health coordination by a nurse, having a family history of breast cancer, receiving the flu vaccine (a likely marker for preventive care), and communication ability. While not all these variables are modifiable, several have been associated with preventive care in other studies. These variables were negatively associated with mammography: having a guardian, Down syndrome, or higher levels of ADL needs. In the sensitivity analysis examining only subjects living in 24-hour residential settings, ADL needs and having a guardian disappeared from the final model.
The association of health coordination by a nurse with mammography (and particularly the interaction between health coordination and special needs relative to the exam) underscores the potential of a nurse already involved with the subject to positively advocate for them to receive preventive services. While few rigorous studies analyze the impact of health coordination on health care for people with intellectual disabilities25
, the relationship has been noted indirectly. For example, researchers note that nurses play an important role in facilitating access to breast cancer screening for women with intellectual disabilities26,27,28
– both in terms of helping their clients to overcome barriers to screening, and in terms of their own knowledge about screening affecting their clients’ screening patterns. It is likely that the nurse, during health coordination activities, prompts the health care provider to consider a mammogram, and then problem-solves the logistical aspects of getting the test for the client (i.e., calling the mammography center to reserve extra time, or ensuring that women who require sedation are adequately medicated and staff prepared for the experience). For older women in the general population, researchers have noted that practice-level factors29
and relationship-centered aspects of the medical home30
affect preventive screening, again speaking to the potential for a healthcare professional to advocate for preventive services.
While the population of women living outside settings with 24-hour support was not as well represented in this study, the above findings likely have significance for this group as well. We suspect that women with intellectual disabilities living more independently in the community, or with family, are less able to consistently access preventive care. They may also receive advice and assistance from family members who are not as well-informed about prevention as the nurse providing healthcare coordination would be. For example, having a guardian was associated with a lower likelihood of mammography, except in the population of women living in settings with 24-hour support.
For women living outside these residential settings, the question of how to approximate healthcare coordination and improve access is not easily resolved. One potential solution would be to shift that responsibility to the healthcare provider, requesting that all primary care practices review the prevention and screening practices for vulnerable patients (potentially extending beyond women with intellectual disabilities), facilitating their involvement in screening and prevention. The patient-centered medical home movement may be an excellent initiative to develop practice-based procedures and/or pilot interventions around this issue. However, these potential solutions do not address the issue of women with intellectual disabilities in the community who do not receive consistent primary care.
An interesting and somewhat counterintuitive finding was the association of higher numbers of psychiatric diagnoses with mammography. While this finding is preliminary (based on secondary data analyses), one potential explanation is that women with psychiatric diagnoses in their record probably receive care and medication for these diagnoses, potentially affecting their ability to tolerate the anxiety of mammography.
Additionally, subjects with high ADL support needs (requiring assistance in at least 3 domains out of 4) who did not receive 24-hour residential supports were less likely to receive mammography. It is unknown whether this is reflective of a more medically complex, fragile group who may not represent good candidates for screening and preventive care versus a group overwhelmed by the logistical difficulties of getting some of these subjects to the exam. However, because this barrier appears to be ameliorated by the involvement of 24-hour residential supports, it is likely at least some of these subjects represent people who are good candidates for screening but experience logistical challenges. Researchers have noted health disparities in people with disabilities who have relatively more functional impairments31
and an increased likelihood of preventive care for people with ID in 24-hour residential settings32
. Future research should determine whether the high ADL support needs generally represent a person who may not be considered eligible for screening, versus someone who is eligible but not receiving mammograms.
It was also intriguing to note low rates of mammography among women with Down syndrome. There are scant U.S. data on this topic, but European researchers have suggested that the breast cancer risk is so low for women with Down syndrome that they are actually at higher risk of radiation injury from mammography20
, and should be counseled not to have routine mammography. It is unclear whether the low rates among women with Down syndrome in our population reflect application of this recommendation by U.S. physicians. It has not been shown, however, that there is a significant risk of radiation injury from mammography for women without Down syndrome33
This study had several limitations. Since mammography is not a rare event, the odds ratios presented here are higher than a comparable rate ratio would be; odds ratios were used to be consistent with other, similar studies. The database, while highly representative of women with intellectual disabilities living in supported settings, has lower representation of women who live with families or in the community without state supports. Therefore, generalizing to the entire population of intellectually disabled women is not possible. Second, this database was designed for other purposes and lacked certain variables that are usually considered – i.e., race, ethnicity, and level of education. Third, some records may have under-reporting of certain disabilities or medical conditions. However, these misclassifications are not suspected to be biased with regard to mammography screening. Fourth, the database lacked information on obesity, known to be common in people with intellectual disabilities34,35,36
and also to be associated with lower rates of screening for some cancers37
. Fifth, since the study was conducted in Massachusetts which has universal health insurance, we were unable to assess the impact of lack of insurance coverage on the likelihood of mammography. Despite these limitations, this database is large, only includes intellectually disabled women, and yielded results which confirmed the model’s validity.
Several federal initiatives5,6
have encouraged providers and health systems to improve primary and preventive care for adults with intellectual disabilities. These data indicate potential areas for intervention: at the system level, health coordination could be broadened or made available to more clients, and guardians could be targeted for more education about screening and health recommendations for people with ID. At the provider level, women with intellectual disabilities who do not live in supported settings could be particularly vulnerable and should be educated and supported in pursuing breast cancer screening38
. Primary care physicians should also be aware of the extent to which residential setting can determine prevention and screening opportunities for people with intellectual disabilities. These findings should be helpful in increasing awareness of characteristics associated with lower rates of screening and prevention for members of a vulnerable, underserved population present in many community primary care practices.