BREAST CANCER SCREENING PRACTICES AMONG WOMEN WITH DISABILITIES Melissa A Clark, PhD Associate Professor of Community Health and Obstetrics and Gynecology Brown University Warren Alpert Medical School and Program in Public Health Lecture sponsored by the Avon Foundation Breast Care Fund

DISCLAIMER DISCLAIMER “I have no real or perceived vested interests that relate to this presentation nor do I have any relationships with pharmaceutical companies, biomedical device manufacturers, and/or other corporations whose products or services are related to pertinent therapeutic areas.”

OBJECTIVES OBJECTIVES Compare the breast cancer screening experiences between women with a disability (WWD) and women without a disability (WND). Compare the breast cancer screening experiences between women with a disability (WWD) and women without a disability (WND). Identify barriers and facilitators of breast cancer screening among women with disabilities. Identify barriers and facilitators of breast cancer screening among women with disabilities.

Women with Disabilities Women with Disabilities Approximately 26 million women in the US have a disability Tend to be diagnosed with breast cancer at a later stage, have larger tumor sizes at diagnosis, and have higher mortality Mixed results of mammography utilization when comparing WWD and WND

“Triple Jeopardy” “Triple Jeopardy” Have a Disability Older Unmarried

“Quadruple Jeopardy” “Quadruple Jeopardy” With a Disability Older Unmarried Sexual Minority

The Cancer Screening Project for Women Research Team

METHODS: Sample and Recruitment METHODS: Sample and Recruitment Sample Not currently legally married Not currently legally married Between years Between years No cancer except non-melanoma skin cancer No cancer except non-melanoma skin cancer Majority of medical care in Rhode Island Majority of medical care in Rhode IslandRecruitment Community-based strategies (Total n=630) Community-based strategies (Total n=630)

Disability Status (n=597) Disability Status (n=597) Rhode Island, Liu & Clark, 2008

Breast cancer screening by disability status Rhode Island, %

RESULTS RESULTS Rhode Island has the highest percent of women in the nation getting screening mammograms.

Reasons for putting off or avoiding cancer screening by disability status Rhode Island, %

Indicators of quality of breast screening experiences by disability status Rhode Island, %

CONCLUSIONS CONCLUSIONS Need to focus more on the screening experience instead of focusing only on individual patient behavior.

MAMMOGRAPHY FACILITY SCAN

Experiences leading up to scheduled mammogram Experiences leading up to scheduled mammogram 1. Time to next available screening appointment (one month or less=1) 2. Is scheduling done within the facility (yes=1) 3. Extra time for breast implants or prior biopsies (yes=1) 4. Barriers to using public bus as transportation to facility (no=1) 5. Barriers to parking at or near facility (no=1) 6. Main entrance to facility disability accessible (yes=1) 7. Can summon help at entrance to facility (yes=1) 8. Mammography facility easy to locate once in building (yes=1)

Experiences while at the mammography facility Experiences while at the mammography facility 1. Bathroom available in waiting room (yes=1) 2. Is waiting room an enclosed room (yes=1) 3. Can receptionist see the entire waiting room from desk (yes=1) 4. Separate changing area for mammography patients (yes=1) 5. At least one changing room is disability accessible (yes=1) 6. Call button or pull cord in changing or exam room (yes=1) 7. Two people can fit comfortably in changing room (yes=1) 8. Secure place for women to store personal belongings (yes=1)

Rhode Island, 2006 Distribution of Mammography Facilities by Total Number of Positive Quality Indicators Total number of facilities = 38

Distribution of Mammography Facilities by Number of Positive Quality Indicators Rhode Island, 2006

Indicators Not Endorsed for Highest Scoring Facilities Indicators Not Endorsed for Highest Scoring Facilities Barriers to using public bus as transportation to facility (no=1) Barriers to using public bus as transportation to facility (no=1) Can summon help at entrance to facility (yes=1) Can summon help at entrance to facility (yes=1) Can receptionist see the entire waiting room from desk (yes=1) Can receptionist see the entire waiting room from desk (yes=1) Call button or pull cord in changing or exam room (yes=1) Call button or pull cord in changing or exam room (yes=1)

THE MAMMOGRAPHY PROJECT: A Follow-up Study to the Cancer Screening Project for Women (CSPW)

METHODS: Sample METHODS: Sample All WWD in the CSPW matched by age (+ 2 years) and insurance status to WND All WWD in the CSPW matched by age (+ 2 years) and insurance status to WND Final Sample Final Sample 93 WWD (20% sexual minority) 93 WND (39% sexual minority)

Reasons for Deciding Where to Obtain Mammograms by disability status Rhode Island, Initial ReasonsReasons for Returning Access Factors

Reasons for Deciding Where to Obtain Mammograms by disability status Rhode Island, Initial ReasonsReasons for Returning Location Factors

Reasons for Deciding Where to Obtain Mammograms by disability status Rhode Island, Reasons for Returning Experience at Facility

CONCLUSIONS CONCLUSIONS Women initially choose mammography facilities based on their health care providers recommendations. Women initially choose mammography facilities based on their health care providers recommendations. Women return to the same facility because of good experiences at that facility. Women return to the same facility because of good experiences at that facility.

On-Schedule Routine Mammography by disability status Rhode Island, 2007 % Women With a Disability Women with No Disability

On-Schedule Routine Mammography by disability status and educational attainment Rhode Island, 2007 %

CONCLUSIONS CONCLUSIONS Women initially choose mammography facilities based on their health care providers recommendations. Women initially choose mammography facilities based on their health care providers recommendations. Women return to the same facility because of good experiences at that facility. Women return to the same facility because of good experiences at that facility. There may not be a positive effect of education on mammography screening for women with disabilities. We need to assess and raise awareness about the specific needs of all women with disabilities. There may not be a positive effect of education on mammography screening for women with disabilities. We need to assess and raise awareness about the specific needs of all women with disabilities.

On-Schedule Routine Mammography by disability status and positive experiences as reasons for choosing a facility Rhode Island, 2007 %

CONCLUSIONS CONCLUSIONS Women initially choose mammography facilities based on their health care providers recommendations. Women initially choose mammography facilities based on their health care providers recommendations. Women return to the same facility because of good experiences at that facility. Women return to the same facility because of good experiences at that facility. We need to assess and raise awareness about the specific needs of all women with disabilities. We need to assess and raise awareness about the specific needs of all women with disabilities. We need to further understand the important aspect of the mammography experience for women with disabilities. We need to further understand the important aspect of the mammography experience for women with disabilities.

CONCLUSIONS CONCLUSIONS Making mammography facilities more accessible helps all women.

ACKNOWLEDGEMENTS ACKNOWLEDGEMENTS National Cancer Institute, K07-CA87070 National Cancer Institute, K07-CA87070 Susan G. Komen for the Cure, POP Susan G. Komen for the Cure, POP Susan Allen, PhD Sze “ Sam ” Liu, PhD candidate Carol Manning, MS Kate McCarthy-Barnett, EdD Jeanne Panarace William Rakowski, PhD Michelle L. Rogers, PhD Xiaozhong Wen, PhD candidate Victoria Wilcox, PhD