Project Summary

View Final Summary Report

To prevent death from late recognition of treatable cancers, preventive services for women such as mammography and pap smears are essential. However, women with cerebral palsy and other disabilities have higher rates of death from breast and cervical cancer because they do not obtain regular checkups. The reasons for this likely include fear, negative attitudes, excessive discomfort, poor accessibility to doctor's offices or mammography centers, and lack of specialized knowledge among health services providers. The Cerebral Palsy International Research Foundation is leading a multi-part project: survey of women and health care providers regarding obstetrical, gynecological, and breast care for women with disabilities; review and analysis of survey data by broadly representative stakeholders at a first workshop; and finally, review of the pilot research results and design of prospective patient-centered research at a second workshop.

The projected outputs from this project are the enhancement of patient and other stakeholder involvement in the analysis, interpretation, application, and dissemination of the first major survey, current practices, and literature review of the obstetrical, gynecological, and breast care for women with disabilities; providing substantive patient and other stakeholder input into a provisional best care guideline for health care of women with disabilities; obtaining meaningful patient and other stakeholder recommendations regarding patient-oriented pilot research projects to be implemented in the second year of the CPF research project; involving patients and other stakeholders in the analysis, interpretation, application, and dissemination of the findings from the pilot research projects conducted in year two of the CPF research project; and seeking patient and other stakeholder input into a long-term research agenda that will address the gaps in evidence for best practice in the health care of women with disabilities.

Project collaborators include The Cerebral Palsy Foundation; Weinberg Family Cerebral Palsy Center at Columbia University Medical Center; Boston Children’s Hospital with Harvard University; the Rehabilitation Institute of Chicago with Northwestern University; Cerebral Palsy Center at UCLA Medical Center; and key stakeholder groups including patients, healthcare providers, clinic administrators, and policy makers. 

More to Explore...

Project Resource: Breast Cancer Screening: Optimizing Mammography Services for Women with Disabilities [Video 1 and Video 2]

Project Resource: Patient Checklist (Made Possible with Grant)

Project Resource: Provider Survey

Project Resource: Patient Survey

Project Resource: Transforming Healthcare of Women with Disabilities: Workshop I Agenda

Project Deliverable: Transforming Healthcare of Women with Disabilities: Workshop I Report

Journal Citations

Project Information

David Roye, MD
Cerebral Palsy International Research Foundation
$224,559

Key Dates

24 months
2015
2017

Tags

State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 16, 2022