Original Article
Breast cancer screening in women with cerebral palsy: Could care delivery be improved?

https://doi.org/10.1016/j.dhjo.2018.02.002Get rights and content

Abstract

Background

Women with disabilities (WWD) have reported lower mammography rates than the general population, however rates for women with cerebral palsy (CP) have not been specifically studied.

Objective

To evaluate mammography rates in women with CP and to identify strengths and barriers with their screening experience.

Methods

Women with CP 40 years or older (n = 118) participating in a prospective cross-sectional survey were queried regarding screening status, imaging modality, and accommodation needs and availability. Categorical variables were summarized and Chi-square testing used to assess factors contributing to screening compliance. The effect of functional factors on screening was evaluated using logistic regression.

Results

77 women (65.3%) had mammograms within the past two years; 56 (47.5%) were screening mammograms. Severity of fine motor deficits was associated with lack of screening (OR 0.559, p = 0.019). 85 (72.0%) experienced positive staff attitudes. Facilities most often met needs for ramps, elevators, and/or wide doorways (92.9%), exam explanations (84.4%), and accessible parking (82.5%). Needs least often met included accommodations for standing (59.3%) or for difficulties with arm/shoulder positioning (57.1%), and wheelchair-accessible mammogram machines (59.1%).

Conclusions

The screening compliance rate for women with CP is low, although the 2-year mammography rate is comparable to that reported for WWD and the general female U.S. population. Women were usually offered respectful care. Adequate physical accommodations during the procedure were reported less often than overall facility environmental accommodations. These findings demonstrate the need for improved screening rates in women with CP, and highlight areas for improving their screening experience.

Section snippets

Source study

This study was conducted as part of the Transforming the Healthcare of Women with Disabilities (THWD) project. THWD was a prospective cross-sectional survey study conducted from 2015 to 2016 across four academic medical centers, and was approved through each institution's local research review board. The overall study sought to define and examine obstacles to optimal healthcare for women with CP. English-speaking women ages 18–89 years with a diagnosis of cerebral palsy were eligible to

Participant Demographics and Functional Characteristics

A total of 118 respondents from the TWHD cohort were breast cancer screening-eligible and included in this study's sample; 96 (81.4%) completed the survey without assistance. Participant characteristics are presented in Table 1. Most participants were 40–64 years old, and had completed high school or had an advanced degree. Employment status was well distributed, with 37 employed, 38 unable to work, 20 unemployed but able to work, and the remainder being homemakers, students, or retired. A

Discussion

This is the first study specifically looking at breast cancer screening and mammography rates among women with CP, a subgroup of WWD that often has more severe levels of mobility impairment and additionally may have other sensory or communication deficits. The women with CP in this study had an overall 2-year mammography prevalence of 65.3%, which is comparable to the CDC's 2015 rate of 65.3% for the general female U.S. population ages 40 and older.9 Of note, the most recently reported 2-year

Conclusions

Women with CP in this study had low levels of screening guideline compliance, but had mammography utilization rates similar to U.S. population data. Women overall reported experiencing respectful patient care, however continue to have unmet needs, particularly with procedural accommodations during mammography. Addressing environmental, physical, and communication barriers may improve the breast cancer screening experience for women with CP and other WWD, with the ultimate goal of improving

Author contributions

Study concept and design: Gaebler-Spira, Byrne, Wolfman, Panko Reis, Marciniak.

Acquisition, analysis, or interpretation of data: Nandam, Gaebler-Spira, Byrne, Hung, Todd, Durkin, Marciniak.

Drafting of the manuscript: Nandam.

Critical revision of the manuscript for important intellectual content: Nandam, Gaebler-Spira, Byrne, Wolfman, Panko-Reis, Hung, Todd, Durkin, Marciniak.

Statistical analysis: Hung.

Obtained funding: Gaebler-Spira, Byrne, Marciniak.

Study supervision: Gaebler-Spira, Byrne,

Conflict of interest disclosures

Dr. Deborah Gaebler-Spira is a current volunteer member of the Cerebral Palsy Foundation's Scientific Advisory Council. Rachel Byrne is a current employee of the Cerebral Palsy Foundation. No other conflicts of interest are reported by the authors of this manuscript.

Funding/support

Research supported by the Cerebral Palsy Foundation from a donation from 100 Women in Finance.

Role of the funder/sponsor

100 Women in Finance had no role in the study conduct; collection, management, analysis, or interpretation of data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication. Rachel Byrne, an employee of the Cerebral Palsy Foundation, was involved with study design and management, data collection, analysis, and interpretation, and revision of the manuscript. Other Cerebral Palsy Foundation employees who are not listed as authors had no involvement

Past presentation/publication

The preliminary abstract of this manuscript was presented at the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) 70th Annual Meeting and published in the AACPDM's online journal, Developmental Medicine & Child Neurology. This final manuscript presents original work that has not been published and will not be submitted elsewhere for publication while being considered by your journal. All authors reviewed and approved the manuscript and this submission.

Acknowledgements

We would like to thank our collaborating investigators: Dr. Susan Gray from Boston Children's Hospital, Harvard University; Dr. Eileen Fowler and Dr. Angela Chan, Center for Cerebral Palsy, UCLA; and Dr. David Roye, Weinberg Family Cerebral Palsy Center, Columbia University.

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