Increasing numbers of American women are living with mobility disabilities and entering age ranges with increased risks of developing breast cancer.2,26
Based on the experiences of the 20 interviewees, mobility impairments can affect women at every point during early-stage breast cancer diagnosis, therapy, and recovery. Furthermore, breast cancer treatment can further impair women's mobility functioning. If their level of functioning is precarious, even slight worsening could tip them toward needing greater mobility aid support or losing the ability to live independently. Although specific underlying conditions can raise particular concerns, mobility impairments—regardless of etiology—carry important implications that clinicians should consider for women newly diagnosed with breast cancer.
Women with walking difficulties frequently rely on their arms for mobility. In making decisions about breast cancer therapy, these women must consider the implications of each treatment modality for arm strength, pain, and functionality. Addressing this issue may require consultation with multidisciplinary teams, including various oncology specialties and rehabilitation professionals, including physiatrists, physical therapists, and occupational therapists. Women who rely extensively on their arms may need additional assistance during the immediate postoperative period, including both inpatient and outpatient surgical recovery. For instance, a woman with a significant surgical wound who self-propels a manual wheelchair may benefit from renting a power wheelchair while her wound heals. She may also need physical therapy to address deconditioning effects of not using her arms before returning to manual wheelchair use. A home occupational therapy evaluation may assist in identifying barriers within the home that could be remedied and in developing strategies for performing routine activities of daily living more safely, efficiently, and comfortably.
Beyond arm functioning, mobility difficulties might affect treatment decision making on multiple levels, including anesthesia regimens,27,28
chemotherapy dosages, mobility aid needs, thromboembolism risks,29,30
and weight gains with adjuvant therapy (both chemotherapy and endocrine therapy).32–35
At each point, multidisciplinary teams of clinicians should explicitly discuss with patients how their mobility might interact with or affect treatments and potential outcomes. Complicating these discussions is the lack of scientific evidence about how specific disabling conditions might interact with various aspects of treatment regimens. As the woman with syringomyelia noted, there were no clinical trials about how breast cancer chemotherapy affects syringomyelia.
Physical barriers in healthcare settings can impede access for women with mobility limitations and require creativity and commitment to overcome.36
These barriers might help explain broader findings about lower mammography use among women with physical disabilities.6–11
Partnerships between patients and clinicians or other staff (radiology technicians) can produce solutions that work, such as assisting with position during mammography and for complete physical examinations. Ensuring that patients receive complete physical examinations and technically acceptable radiographic studies is essential to providing high-quality care. Section 4203 of the Patient Protection and Affordable Care Act, signed by President Barack Obama on March 23, 2010, requires the federal Access Board, in consultation with the Food and Drug Administration, to specify physical access standards for medical diagnostic equipment, including radiographic equipment and examination tables. These mandates must be met within 24 months of the law's signing.
Despite confronting physical barriers, however, the 20 women studied here used similar approaches to find their breast cancers as those used by women in a population-based study of breast cancers detection. In that study, which used Wisconsin Cancer Registry Data, approximately 41% of breast cancers were detected by mammography, 48% by self-breast examination, and 11% by a physician during a physical examination.37
Among the 20 women interviewed here, 50% had their cancers detected on mammography, 40% by breast self-examination, and 10% by physicians.
Finding that 40% of the interviewees detected their tumors by self-examination is especially intriguing in light of recent controversies surrounding recommendations of the U.S. Preventive Services Task Force (USPSTF) for breast cancer screening.38
In its November 2009 recommendations, the USPSTF gave teaching breast self-examinations a rating of D, indicating that “there is moderate or high certainty that the service has no benefit or the harms outweigh the benefits” and suggesting that practitioners “discourage the use of this service.”39
Even if the USPSTF had strongly recommended this service, some women with mobility impairments may have manual dexterity or sensory impairments that could impede self-examinations. Given frequent physical barriers to screening mammography, however, which received a grade B recommendation from the USPSTF for women between 50 and 74 years of age,38
educating women with physical disabilities about the full range of options for detecting breast cancer might be indicated. This issue requires further study.
This study has the significant limitations of qualitative interview studies, notably questions about generalizability from our study population. The interviewees were generally highly educated (four fifths had college or postgraduate degrees), and many described having done considerable research about breast cancer when they were diagnosed. Despite concerted outreach efforts, we were able to recruit only 2 African American women and no Hispanic women to participate; women who are racial and ethnic minorities may have substantially different experiences from those of white women, although the physical challenges may be similar. Seventeen women were recruited through informal networks of disabled women, many with polio. Several women disabled by polio suggested that numerous chest radiographs they received during childhood polio treatments heightened their risks for subsequent breast cancer.
In addition, we conducted interviews both in person and by telephone. It is possible that these different communication modalities might have affected the types of responses women provided, especially to potentially sensitive questions. Given feasibility constraints and our desire to include women outside metropolitan Boston, using these two communication modes seemed reasonable. Some in-person interviews included family members, most of whom primarily confirmed assertions of the women or assisted in amplifying their comments. It is possible that interviews including family members might have produced somewhat different findings from individual interviews with the same women (e.g., different people frequently remember different things about the same situations). Finally, the breast cancer experiences of our study sample spanned several decades, raising questions about the relevance of some of the older experiences for today. Nonetheless, despite the 1990 passage of the Americans with Disabilities Act (ADA) and the 2008 passage of the ADA Amendments Act,40
healthcare facilities often remain physically inaccessible.8,14,15,41