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  • Recent studies in the Journal of Advanced Nursing and Intellectual and Developmental Disabilities showed that women with intellectual disabilities possessed limited knowledge of breast cancer, including risks, symptoms and preventative factors. Breast Cancer Awareness Month is an opportunity to examine the NCI data on mammograms and raise awareness of breast cancer and diagnostic testing within the ID/DD community.

    According to the 2010-2011 Adult Consumer Survey data, 79% of female respondents over the age of 40 had had a mammogram in the past two years. Statehealthfacts.org (of the Kaiser Family Foundation) shows that in 2010, 75.4% of women over age 40 in the country had received a mammogram in the past two years. The data seem to show that the NCI respondents, on average, receive mammograms at a higher rate than the non ID/DD population. However, the data on mammograms become even more compelling when examined by residence type.

    According to the 2010-2011 NCI data, 95% of female respondents over age 40 and living in institutional settings received mammograms within the past two years. Comparatively, 87% of those living in a community-based setting, and 82% of those living in individual homes reported having received a mammogram in the past two years. However, a mere 59% of respondents living in a parent’s home reported having received a mammogram in the past 2 years. These data may indicate that individuals living in a parents’ home, and parents housing a person with DD/ID need to be targeted in breast cancer awareness-building endeavors.

    Women with ID/DD are as likely to get breast cancer as women in the general population but are less likely to obtain mammograms. It is critical that women with ID/DD and their families/caretakers are made aware of the risk of Breast Cancer, and how to detect it.

    For more data on mammogram usage in the ID/DD population and other indicators, see the ‘Reports” page at http://www.nationalcoreindicators.org/resources/. And, as always, we would love to see what you are doing with NCI data. Let us know by sending an email to dhiersteiner@hsri.org.


    Sources:

    Parish, S., Swaine, J., Luken, K, Rose, R., Dababnah, S. (2012) Cervical and breast cancer-screening knowledge of women with developmental disabilities. Intellectual and Developmental Disabilities. 50(2):79-91.

    Truesdale-Kennedy, M., Taggart, L., & Mcilfatrick, S. (2011) Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography. Journal of Advanced Nursing 67(6), 1294–1304.

    http://www.cdc.gov/Features/dsMammograms/

     

  • The NCI sub-domain entitled “Rights/Respect” was designed based on the idea that the protection and affirmation of an individual’s rights is a critical gauge of service quality. The NCI Adult Consumer Survey uses several questions to ascertain whether the respondent receives the same respect and protections as others in the community.

    The rights/respect section of NCI identifies:

    1. The proportion of people whose basic rights are not respected by others, including (a) having one’s mail opened without permission, (b) having restrictions on being alone with others, (c) having restrictions on using the phone, and having people enter their (d) home and (e) bedroom without permission.

    2. The proportion of people who have participated in a self-advocacy group meeting, conference, or event.

    3. The proportion of people who report satisfaction with the amount of privacy they have.

    4. The proportion of people indicating that most (a) day, (b) work, and (c) home support staff treat them with respect.

    Here is a selection of national results from the 2010-2011 Adult Consumer Survey:

    Indicator

    N

    Overall

    In Institution

    In Community Based

    In Individual Home

    In Parent's Home

    Home is entered without permission

    5675

    10%

    10%

    13%

    8%

    7%

    Bedroom is entered without permission

    5642

    15%

    8%

    16%

    11%

    18%

    Mail is opened without permission

    7266

    12%

    6%

    11%

    10%

    15%

    Can be alone with visitors at home

    7463

    83%

    89%

    84%

    91%

    81%

    Allowed to use phone/internet when desired

    6749

    91%

    86%

    89%

    97%

    90%

    Have participated in a self-advocacy event

    6541

    31%

    28%

    33%

    39%

    23%

    Have enough privacy at home

    5372

    91%

    86%

    87%

    94%

    93%

    Staff at home is nice and polite.

    3985

    94%

    89%

    93%

    94%

    96%

    Staff at work is nice and polite

    967

    96%

    n/a

    95%

    90%

    97%

    Staff at day program is nice and polite

    3721

    95%

    94%

    95%

    94%

    96%

     

    Interestingly, many of the results seem to be affected by the residential situation of the respondent. For example, 86% of respondents living in an institutional setting say that they are allowed to use the phone/internet when they want, compared with 90% of those who live in their parent’s home. Fifteen percent of respondents living in their parent’s home claim that their mail is opened without permission, while only 6% of respondents living in institutional settings assert that their mail is opened without permission. 23% of respondents living in their parent’s home have participated in a self-advocacy event, compared with the national average of 31%. Eighty-six percent of respondents living in an institutional setting assert that they have enough privacy at home, compared to the national average of 91%.

    States can use national and state-specific data on rights and respect towards many ends. Results on this sub-domain can be used as an outcome measure in assessments of service quality. For example, The Massachusetts Department of Developmental Services (DDS) compiled a Quality Assurance Brief (QAB) entitled “Protection and Affirmation of Rights.” (http://www.mass.gov./eohhs/docs/dmr/qa-assurance-brief-v1i3.pdf). Mass. DDS has established a set of outcomes that form a basis for assessing service quality. This QAB uses NCI data and data gathered from licensure and certification reviews to evaluate whether the state is fulfilling the outcome of protecting and affirming the rights of those receiving services. At the end of the QAB, Massachusetts DDS has identified ways in which it will follow up and implement quality improvement initiatives and activities.

    For more data on rights/respect and other indicators, see the ‘Reports” page at http://www.nationalcoreindicators.org/resources/. And, as always, we would love to see what you are doing with NCI data. Let us know by sending an email to dhiersteiner@hsri.org.

     

  • NCI is excited to introduce a new User-Friendly version of the Consumer Outcomes Report. The Report uses plain language and pictures to describe select items from the Consumer Outcomes Report. We owe a great thanks to California’s Consumer Advisory Committee (CAC) who were instrumental in helping develop this new way of presenting NCI data.

     The inaugural “What We Have Learned from the NCI Adult Consumer Survey” shows 2010-11 National NCI data. In future years, along with the national report, each state will receive its own report showing the state’s specific data. The User-Friendly Reports will be released with the national data and located on the NCI website under the User-Friendly Reports section of the Reports Page.

     Thanks again to the CAC! We look forward to getting your feedback