Coming Out of the Shadows: Addressing Cancer Care for Adults With Disabilities

Coming Out of the Shadows: Addressing Cancer Care for Adults With Disabilities

Rochelle Strenger, MD, and Mary Ann Fenton, MD

Article Highlights

  • Approximately 22% of adults in the United States are living with a disability that limits a necessary activity such as mobility, cognition, vision, self-care, and/or independent living.
  • Patients with some disabilities are more likely to be diagnosed with late-stage cancer and forgo or be denied cancer screening.
  • Cancer centers should provide institutional support to help care for patients with both mental and physical disabilities and ease access issues faced by various stakeholders.

Although the diagnosis and treatment for malignancy can be an overwhelming experience for all patients and their caregivers, patients with disabilities in particular present unique challenges.1-3 According to the Centers for Disease Control and Prevention, a disability is “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participant restrictions).”4 Using this broad definition, the Centers for Disease Control and Prevention estimates that 22% of adults in the United States are currently living with a disability that limits a necessary activity such as mobility, cognition, vision, self-care, and/or independent living.4 To complicate issues further, nearly half who report a disability live below the poverty level, and one-third of unemployed adults who are able to work report a disability.2

Fortunately, there is a long history of advocacy in place for people with disabilities. Since the Americans with Disabilities Act passage in 1990, we have witnessed improved access to buildings and greater workplace accommodations.5 Despite this, challenges remain in the optimal delivery of cancer care across the continuum, regardless of the disability. In 2006, Smeltzer reported that women with a disability were significantly less likely to undergo screening for breast or cervical cancers; the worse the disability, the greater the likelihood that they were not participating in, or they were denied, screening.5 Merten et al reported that adults with disabilities were not getting screened because of multiple barriers, including cost, discomfort on the part of the health care provider, and physical and cognitive restraints.6 Furthermore, the obstacles may be specific to the disability, potentially increasing the difficulty that medical centers might face specific to the disability in the provision of quality care (e.g., addressing positioning for mammography in women with limited mobility). These issues have been documented for women with mental illness, although broad conclusions about how to best report and approach screening barriers remain undefined because of the complexity and heterogeneity of mental illness among this population.7

Beyond screening, other data suggest patients with disabilities who are diagnosed with cancer have worse outcomes. For example, in 2017, Iglay et al reported that compared to patients who have no reported mental illness, patients with mental illness were more likely to be diagnosed at an advanced stage and had a statistically insignificant but overall increased incidence in breast cancer–specific mortality. This retrospective study was conducted using SEER-Medicare data, which included more than 19,000 patients with breast cancer age 68 and older.8

Irwin et al noted that patients with schizophrenia are more likely to die of cancer when compared to the general population, probably attributable to multiple factors including greater rates of high-risk behaviors (e.g., smoking) and greater medical comorbidities, which may limit access to cancer screening.9 In a follow-up study, patients with schizophrenia were shown to have frequent disruptions in breast cancer care associated with absence of psychiatric care or medication, leading to deviations from guideline-based care and cancer recurrences.10 Finally, in one study from South Korea, Park et al found that male and female patients reporting a disability were 1.6 and 1.5 times more likely, respectively, to be diagnosed with late-stage cancer—a significant finding even after controlling for socioeconomic factors.11

Patient-Centered Care Through Individualized Oncology Support Programs

Although it is not feasible or practical to provide a single solution to optimize care for patients with disabilities, we propose that cancer centers implement a system of institutional support to help providers care for this population and ease the access issues faced by various stakeholders. The overarching principle relies on the coordination of care across multiple providers including the primary care physician, radiologists, surgeons, oncologists, and psychiatrists/mental health specialists. These cancer care providers, coupled with appropriate resources from both local and state communities, can form the basis of individualized oncology support programs (Fig. 1). At our institutions, we have sought to address challenges to cancer care through education, access, and support.

Educational initiatives should be aimed at all stakeholders within the disability community to raise awareness of cancer surveillance and the tenets of early detection. This must begin in the community, including efforts to reach relevant medical providers, patients, and caregivers—including those who might be caring for these patients in a group home setting. For those with cancer, we have relied on the role of nurse or lay navigators who are at the center of team-based care and charged to work with patients and their caregivers on practical aspects in care delivery, including the timing of visits, clinical flow through the waiting room and laboratory areas, seating within the chemotherapy suite, and interfacing with infusion room staff.

Personalization comes from a better understanding of the individual’s disability and what needs should be anticipated to ensure any plan is effective. Examples of issues that might warrant a personalized solution include transportation, particularly for those with a physical disability; ensuring the availability of sign language interpreters for the hearing impaired; access to assistive technologies for the visually impaired; and coordinated treatment with mental health specialists embedded in the cancer center for patients with anxiety, depression, autism, schizophrenia, or other issues. The care team must be available after cancer treatment is complete to ensure the appropriate transition to survivorship and aftercare, including routine follow-up and secondary prevention. For women with breast cancer, it also encompasses adherence to extended treatment. 

Conclusion

In summary, patients with disabilities face many barriers to screening, treatment decisions, completion of curative therapies, and receipt of appropriate aftercare. All patients with disabilities, including mental and physical, deserve age-appropriate cancer screening and proper considerations when it comes to treatment, which, in our experience, requires a multidisciplinary and compassionate approach. Implementation of individualized oncology support plans may help address these gaps and provide a path forward in ensuring equal access to quality care and outcomes.   

About the Authors: Dr. Strenger is medical director and clinical director of Women’s Medical Oncology of Miriam Hospital, Lifespan Cancer Institute, and clinical associate professor at the Warren Alpert Medical School of Brown University. Dr. Fenton is clinical director of Breast Medical Oncology at Rhode Island Hospital Lifespan Cancer Institute, and is a clinical associate professor at the Warren Alpert Medical School of Brown University.