Exploring Cancer Treatment Experiences for Patients with Pre-existing Mobility Disability

Abstract

Objective:

We explored the process of cancer care for patients with pre-existing mobility disability, focusing on treatment decisions and experiences.

Design:

We recruited 20 participants with pre-existing mobility disability, requiring use of an assistive device or assistance with activities of daily living, subsequently diagnosed with cancer (excluding skin cancers). We conducted open-ended individual interviews, which reached data saturation and were transcribed verbatim for conventional content analysis.

Results:

Concerns coalesced around 4 themes: disability-related healthcare experiences affect cancer treatment decisions; concerns about cancer treatment worsening functional impairments; access barriers; and limited provider awareness and biases about treating people with disability. Residual fear from previous medical interventions and concerns about exacerbating functional impairments influenced cancer treatment preferences. Participants also raised concerns that their underlying disability may be used to justify less aggressive treatment. Nevertheless, cancer treatment did exacerbate mobility difficulties for some participants. Inaccessible hospital rooms, lack of accessible medical equipment, and attitudinal barriers complicated treatments.

Conclusion:

People with pre-existing mobility disability experience barriers to cancer treatment, compromising quality of care and potentially outcomes. Further training and proactive planning for accommodating disability during cancer treatment and rehabilitation are warranted.

Introduction

The 2004 report Making Cancer Health Disparities History called for eliminating health disparities linked to inequitable access to cancer services.¹ The report included people with disability as a disparities population, highlighting physical barriers that limit access to cancer care.¹ Approximately 14% of the U.S. population has a mobility disability, the most common disability type.² Although prevalence of some cancers appears higher among people with mobility disability compared to the general population,³ this population confronts persisting barriers to care, lower cancer screening rates,⁴ and treatment disparities.^5,6 For example, women with pre-existing disability under age 65 are less likely to undergo breast-conserving surgery, and among those who do receive breast-conserving surgery, women with disability are 17% less likely to receive radiotherapy – a clear example of substandard care.⁵ People under age 65 with non-small cell lung cancer are less likely to undergo surgery than their non-disabled peers; higher lung cancer mortality rates for people with disability disappear after accounting for treatment difference.⁶ Higher cancer mortality rates among people with disability may be mediated by screening disparities,⁷ physical barriers,⁸ and access to appropriate rehabilitation services.⁹

Cancer and its treatment are widely recognized to affect functional status. Appropriate cancer rehabilitation services could benefit patients with pre-existing disability who develop cancer.¹⁰ Collaboration between physiatrists, experts in caring for people with underlying disabling conditions, and oncologists, for example, could address mobility concerns in the context of cancer care and recovery.

Most studies exploring cancer care for people with pre-existing mobility disability have used large survey databases.^7,11 Few studies have examined these topics by interviewing patients or clinicians.^8,12–14 As part of a larger mixed-methods study,¹⁵ we interviewed people with pre-existing mobility disability who were subsequently diagnosed with cancer. We focus here on participants’ treatment decisions and experiences with cancer therapy. Findings may inform efforts to improve quality of care, including further interdisciplinary consultations among rehabilitation specialists and oncologists.

Methods

The Massachusetts General Hospital (MGH)/ Partners HealthCare Institutional Review Board (IRB) approved this study, including verbal informed consent. Participants gave verbal informed consent after being informed of interview procedures, including audio-recording. Below, to describe our qualitative research methods, we report items consistent with the COnsolidated criteria for REporting Qualitative Research checklist.

Interview Protocol

We designed an open-ended interview protocol to explore cancer care experiences of people with pre-existing mobility disability. Interview modules included: general medical and social history; disability history (underlying conditions, use of assistive devices); cancer history (symptoms, diagnosis, treatment); and recommendations for other people with disability who also develop cancer.

Participant Recruitment

Eligibility criteria for study participation included: mobility disability requiring use of an assistive device and/or assistance performing activities of daily living (ADLs); duration of disability for at least one year preceding cancer diagnosis, other than skin cancer; 21 to 72 years of age at time of cancer diagnosis; and no prior cancer history. Given goals of our study, we included individuals from young adulthood to the leading edge of the “baby boom” generation (i.e., persons born from 1944 – 1964). We identified participants through disability support networks, including those targeting specific medical conditions (e.g., spinal cord injury (SCI), post-polio syndrome, multiple sclerosis, Parkinson’s disease, cerebral palsy), cancer advocacy networks, and general social media networks (e.g., Facebook, Reddit, other online forums). We did not verify self-report of medical history (e.g., through record reviews).

Interview Procedures

All interviews were conducted by L.I.I. (MD, MSc), a woman and professor of medicine and health policy researcher with extensive experience conducting in-depth, qualitative research interviews on wide-ranging disability topics.^8,12 The interviewer did not have pre-existing relationships with any interviewees. The research team does not report biases that may have influenced findings.

Telephone interviews averaged 57 minutes; only the moderator and participant were present for interview duration. Transcripts were not returned to participants following completion of interviews, and no repeat interviews were conducted. We mailed $50 gift cards to participants in thanks for their time. N.A. compared interview transcripts to audio-recordings to ensure accurate transcription.

Analysis

Transcripts were reviewed by N.A. (research assistant) with oversight by L.I.I.; an oncologist (A.E.J.) reviewed the findings for face validity. We reviewed transcripts using conventional content analysis,¹⁶ a descriptive qualitative method¹⁷ that draws explicitly from data without overinterpreting the results. We used a consensus-driven qualitative process¹⁸ to confirm themes; we did not use qualitative analysis software to code texts for analysis. We achieved data saturation for general themes with 20 interviews.

Results

Table 1 presents demographic information for the 20 interviewees, who came from 11 states around the U.S. Four major themes emerged regarding treatment decisions and experiences. We describe themes below, including verbatim quotations.

Table 1.

Demographic Characteristics

N=20

Characteristic
Age at diagnosis, mean (S.D) years	59.6 (12.8)
Gender, n
Male	8
Female	12
Race, n
White	18
Non-white	2
Hispanic ethnicity, n	1
Cancer Type
Prostate Cancer	6
Colorectal Cancer	2
Ovarian Cancer	3
Non-Hodgkin lymphoma	2
Breast cancer	2
Thyroid cancer	2
Other†	3
Family history of their cancer type, n
Yes	4
No	5
Not reported	11
Underlying Disabling Condition
Spinal Cord Injury	5
Polio	5
Multiple sclerosis	2
Other‡	8

^†Hodgkin lymphoma, uterine, and cervical cancers

^‡Cerebral palsy, neuromyelitis optica, Friedreich’s ataxia, orthopedic injuries, amputation(s)

Prior Healthcare Experiences Related to Disability Affect Cancer Treatment Decisions

Participants often had extensive healthcare experiences related to disabling conditions, and their feelings about those experiences strongly affected decision-making about cancer treatments. A participant with multiple sclerosis (MS) described being offered three options for treating prostate cancer: resection, chemotherapy, or active surveillance. He had a history of surgeries, including on his spinal cord, making him fearful of prostate resection. He opted for active surveillance, telling his physician, “You’re not going to do any cutting on me. I’ve had enough cutting done on me.”

A participant with cerebral palsy (CP) and thyroid cancer expressed fear of surgical resection, fueled by an experience of a friend who also had CP: “I had a friend with a more severe case of CP become septic. And I watched her die… after an experimental procedure, I watched her become septic and die. And I was like, ‘This is going to happen to me. This is how I’m meant to die.’” The participant eventually agreed to thyroid resection but insisted that her surgeon “take[s] the whole thyroid because I’m only doing this once …”

Patients’ and Physicians’ Concerns about Treatment Exacerbating Functional Impairments

Participants indicated that physicians considered the implications of disability in making treatment recommendations. A participant with MS who developed non-Hodgkin lymphoma noted, “I didn’t have chemotherapy as such because they were afraid it would be too difficult with my MS.” A participant with polio who developed prostate cancer reported that he “opted for doing radiation, because the doctor told me that it would be very uncomfortable for me to take it out, because I’m sitting in the [wheel]chair all the time.” The oncologist was concerned that resection would exacerbate incontinence. Because of his polio and paralyzed diaphragm, a participant was concerned about anesthesia required for surgery. He elaborated, “Well, I talked it over with her [SURGEON], knowing that the odds of me coming out of surgery, going under, are about 20 to 30 percent against me coming out of that. The biggest battle … wasn’t the cancer. It was the fact that I was going under.”

Concerns about treatments negatively affecting functional status were confirmed for some participants. “The chemo was pretty bad,” reported one participant with SCI, “that’s why I stopped working. I couldn’t function anymore. I was completely immobile. I lost all my strength.” Another participant who had mobility impairment from an orthopedic injury recounted that ambulation difficulties increased after a lymph node dissection was performed on the side where she uses her cane. “I really can’t use my arm,” said the participant, “it’s been a little bit of an ordeal …” Another participant with polio described that hormonal treatment increased difficulty propelling his wheelchair: “It kind of sucks… it kind of limits you… I have a hard time traveling… I don’t do anything for myself anymore… Just getting yourself around is terrible.” One participant with Friedreich’s ataxia who developed prostate cancer opted for active surveillance given concerns with exacerbating functional limitations: “My wife and I said, ‘No.’ Because we thought it [surgical resection] would be difficult for me with my ataxia.”

However, another participant, who already had urinary incontinence because of paraplegia, chose resection of his prostate cancer. “Take it out,” he told his physician. “I can’t become more incontinent. … Then we decided on the most aggressive approach. So, I then had 40 days of radiation…”

Accessibility Barriers and Unmet Needs During Cancer Treatment

A participant with neuromyelitis optica and prostate cancer described confronting inaccessible equipment, notably radiation therapy tables. Three or four clinical staff members assisted with transferring him from his power chair onto the table. He reported that there was “no lift device” to facilitate transfers. Another participant with SCI reported, “I have never in all of the times, and this includes after the cancer, after the hysterectomy, I have never been in an accessible hospital room.” She noted that because of her SCI, “they want to do everything from your bed … you’re dependent on people helping you … I’ll say, ‘Is my room wheelchair accessible so when I get up, I can use my bathroom?’ And the answer has never been yes.” The participant described a lack of preparedness for assisting with daily needs, including bowel and bladder management: “It’s gotten worse in terms of there’s not enough people really to take care of somebody with extra special needs.” Another participant with CP described a similar experience with unmet needs. She required help transferring between her bed and wheelchair to use the bathroom during her hospital stay but was instructed by nursing staff to “wait till the shift change.” During another hospital admission, she was angry that the “night nurse wouldn’t help me go to the bathroom. In fact, she put me in an adult diaper, and I was pissed.” The interviewee also described unmet needs during radioactive iodine treatment, which required quarantine in the hospital:

I didn’t realize what that meant for me. That meant that nurses couldn’t even come in. They could come in for maybe 15 minutes. So, during this period, they bring me my food and they leave … they took my [wheel]chair from me because I didn’t want to touch it… So, I started to crawl around the hospital room just to get myself to the bathroom.

Another participant with SCI described being admitted to the hospital for eight weeks (i.e., for chemotherapy) because of his disability. He was not allowed to get out of his hospital bed because of concerns that he would fall out of his wheelchair. He described a lack of preparedness to accommodate his needs, notably problems with urinary catheterization and improper attention to preventing pressure injuries. The participant was furious that the hospital could not supply him with catheters for his usual intermittent catheterization. “So, I’m doing chemo,” said the participant, “I’m getting urinary tract infections from this Foley [catheter]. My immune system is at its worst, and you don’t even give me an intermittent catheter to go to the bathroom… This is a hospital.” His wife brought him urinary catheters from home. He also did not receive an alternating pressure mattress to minimize risk of pressure injuries, noting that “my wife would come twice a day to help me move around, switch me from side to side, and help me shower and take care of my medical stuff.”

Another participant with SCI also voiced concern about lack of attentiveness to preventing pressure injuries during hospitalization:

I feel like I’m hyper-aware to every single thing because doctors have not been very aware. So, I think I was more aware and doing things to make sure that that didn’t happen…I got to know the nurses, and I knew which ones were meticulous … So, when people were there that I knew would take care of me, I could relax for a minute and not have to be the one in charge.

Limited Knowledge and Troubling Attitudes about Treating Patients with Disability

Participants reported that clinicians have little knowledge about treating patients with disability and accommodating needs, perpetuating stigmatized views about these patients. A participant with SCI described her perceptions when medical residents were brought in to learn about her needs:

Sometimes you can see that fear in their eyes… you feel like you’re the specimen, and they’re kind of learning from you … It can be really, really, I think, scary in that you’re not sure what they know. And do they understand and that sort of re-education when you’re meeting new providers? And then sometimes the providers that you’ve had still don’t seem to get certain things … I guess, we all have to develop our own orientation for our provider about who we are, and what our special issues are, and what they need to learn, when they’re treating us.

“They [hospital staff] had minimal training,” reported a participant with polio. “And some of them didn’t want to be there. I’m sure, just the attitude. It was extremely difficult to get their attention when you needed them.” Another participant with SCI described similar attitudes from unspecified clinical staff:

There’s no compassion …They didn’t care about my special needs …They’ll let you freaking die. They’ll let you rot there for eight weeks without taking a shower. They don’t give a shit … And hospitals couldn’t care; we’re just a meat… they don’t know what to do for us.

For some participants, erroneous assumptions of clinical staff about disability appeared to affect treatment recommendations. One participant was in her early 40s and married, with three young children; in her late teens, she had double amputations (below elbows and above knees) because of an aggressive bacterial infection. Nonetheless, she became an accomplished athlete, using prostheses to operate her manual wheelchair. She was initially told she had stage 2 breast cancer, and her physicians advised her to prepare for the most aggressive treatment option, including double mastectomy, chemotherapy, and radiation. However, further workup revealed that she actually had stage 4. She was angry that, despite a more severe diagnosis, her physicians recommended less aggressive treatment – she felt physically up to the demands of the more intensive therapy. “So, what I thought was going to be a year and a half of hell, a lot of aggressive, painful treatments,” she said, “just slowed down to, ‘We’re just going to do hormonal therapy … take this pill. Come back in three months.’” The participant felt the less aggressive treatment recommendations resulted from failure to recognize her athleticism, excellent physical conditioning, and erroneous assumptions about her disability:

I have a worse diagnosis but less treatment. That was really, really hard for me to wrap my mind around, and a lot of what people would say, as an explanation for why, was things like, ‘Oh, we don’t want to put you through that.’ And it infuriated me because, [MY SPOUSE] and I both, we thought, ‘No! Put me through that.’ I’m really strong, and I’ve handled worse. And I may look really disabled, and you may question how I even got here today. But you have no idea where I’ve been or what I’ve been through. And I don’t want you and your assumptions to have any factor at all in treatment that I’m taking because I’m a mom of three young kids, and I want to see these kids grow up. Don’t put limits in front of me because of the way I look. That was really, really hard. And I’ve straight up asked people a lot. I said, ‘Are you doing this because I’m disabled?’

The participant was eventually convinced by her physicians that the less aggressive treatment would be most appropriate. However, she felt that her initial preferences were dismissed due to her pre-existing disability; this contributed to inadequate communication with her providers about her treatment course.

Discussion

The experiences of people with pre-existing mobility disability who subsequently develop cancer have received little study. Our findings suggest that mobility disability can complicate treatment decisions. Trepidation caused by previous, disability-related medical or surgical interventions may affect cancer treatment choices. Furthermore, concerns about exacerbating existing functional impairments can influence therapeutic decisions. Participants raised concerns that underlying disability may be used to justify less aggressive treatment for cancer – although treatment did worsen mobility impairments for some participants. Patients reported that additional factors complicated treatments, including physical access barriers. Participants also described knowledge and attitudinal barriers among clinicians about providing disability accommodations, suggesting the need for more training. Finally, some cancer treatments may erroneously be judged as impractical due to bodily differences—such as lying flat for patients with scoliosis or those using a ventilator, or being immobile for a prolonged period for external beam radiation for patients with movement disorders. Creative problem-solving between rehabilitation specialists or disability access coordinators and cancer specialists may resolve the apparent impasse. Table 2 provide recommendations for improving cancer treatment experiences for people with pre-existing disability, organized by themes.

Table 2.

Themes and Recommendations

Theme	Recommendation
Prior healthcare experiences related to disability affect cancer treatment decisions	Pre-existing disability and difficulty performing ADLs should not automatically be used to justify less aggressive treatment options for cancer. Risks of certain treatments should be viewed in the context of pre-existing conditions (e.g., understanding whether treatment may exacerbate neuropathy or urinary incontinence). Efforts should seek to mitigate treatment risks, rather eliminate potentially beneficial treatment options.
Patients’ and physicians’ concerns about treatment exacerbating functional impairments	Given the importance of functional status considerations for people with pre-existing disability, involving rehabilitation specialists in care planning from the time of cancer diagnosis may prevent unnecessary complications or care that is less intensive than would typically be used to benefit patients. Clinicians should utilize the impairment-driven cancer rehabilitation model to address baseline functional impairments and anticipate future impairments that may result from cancer and its treatment. Consider providing prehabilitation services, as they may improve baseline functional status and maximize treatment outcomes. Consider providing post-treatment rehabilitation services, as they may reduce cancer-related declines in functional status.
Accessibility barriers and unmet needs during cancer treatment	Proactively address accessibility barriers in clinical settings. Height-adjustable exam tables, wheelchair accessible weight scales, and other diagnostic equipment (e.g., MRI, CT scanners) should be available. Lift devices may assist in transfers during radiation therapy sessions. Consult rehabilitation specialists or disability access coordinators about ways to accommodate patients with functional limitations in clinical settings. Train clinical staff about specific needs of patients with disability (e.g., avoiding pressure injuries during hospitalization, managing daily bowel programs).
Limited knowledge and troubling attitudes about treating patients with disability	Disability training for clinical staff should include modules on implicit bias and disability cultural competence. Encourage clinical staff to work collaboratively with patients to ensure that needs are met.

Our findings are consistent with other studies in broader healthcare contexts. Various factors may reduce health-seeking behavior among people with disability, including perceived disability discrimination in health settings,¹⁹ historical precedents including eugenics and subsequent fear of professional control, erroneous assumptions about living with disability and limited disability cultural competency training among clinicians,²⁰ concerns about treatment exacerbating mobility challenges and increasing dependence for performing ADLs,¹² and physical access barriers.⁸ However, some participants were not reluctant to seek care but expressed concerns about physicians recommending less aggressive treatment because of underlying disability. Physicians and patients may disagree about performance status and expected outcomes,²¹ potentially limiting available options for people with pre-existing disability. The exclusion of people with disability from clinical trials limits evidence about implications of performance status in this population.²² Difficulties performing ADLs does not preclude potential benefits from treatment. Instead of excluding potential treatments due to underlying disability, physicians should explore risks of certain treatments in the context of pre-existing conditions (e.g., understanding whether treatment may exacerbate neuropathy or urinary incontinence), and seek to mitigate treatment effects, rather than eliminate potentially beneficial therapeutic options. Furthermore, professional meetings for healthcare providers including oncologists and physiatrists should provide training opportunities specifically on treatment considerations and rehabilitation oncology for patients with pre-existing disability. Educational resources on these topics should also be available for consumers, perhaps through disability advocacy groups.

Given the importance of functional status considerations for people with pre-existing disability, involving the person’s rehabilitation specialist in care planning from the time of cancer diagnosis may prevent unnecessary complications or dependency, and abridged care. Cancer rehabilitation specialists, if available, have training in caring for people with chronic disability, and people who acquire functional impairments — temporarily or permanently — as a result of treatment. Discussing a treatment plan, likely impact on disability-specific issues, ways to mitigate harms, and plans for accommodating disability-specific needs can be part of preparatory planning in cancer care. Patients can also create their own document to spell out disability-specific needs for cancer providers and for hospitalizations. A person who is having a surgical resection that will affect lifting ability or transfers while recovering can strategize ways to manage mobility needs ahead of time.

Clinicians can use the impairment-driven cancer rehabilitation model to address baseline functional impairments and anticipate future impairments that may result from cancer and its treatment.²³ Prehabilitation, an important component of this model, is care that spans the period from cancer diagnosis to the start of treatment.²³ Prehabilitation can improve baseline functional status to reduce cancer-related morbidity, increase the range of recommended treatment options, maximize outcomes, decrease hospital admissions, and reduce costs associated with cancer.²³ Some studies suggest that cancer prehabilitation may be especially useful for people with underlying chronic conditions contributing to disability. For example, an early study of lung cancer patients with underlying chronic obstructive pulmonary disease found that prehabilitation for two weeks prior to lung resection, and three months of rehabilitation post-resection, improved pulmonary function and outcomes.²⁴

Later studies have explored potential benefits of prehabilitation for other cancer types. Research suggests that targeted prehabilitation improves return to baseline urinary continence in prostate cancer patients undergoing prostatectomy,²⁵ reduces postoperative complications in patients with colectomy for colorectal cancer,²⁶ and improves upper extremity recovery in patients undergoing mastectomy for breast cancer.²⁷ Prehabilitation can also have psychosocial benefits, notably improvement in mental health and other outcomes.²³ However, timing of prehabilitation in relation to starting treatment is critical, balancing sufficient prehabilitation therapies against minimizing delays in treatment. Nevertheless, widespread availability of prehabilitation programs and resulting improvement in baseline functional status can expand recommended treatment options for people with pre-existing mobility disability. Alternatively, for those who will likely experience functional impairments during treatment, plans to accommodate functional decline with new strategies, equipment, or personal assistance services can potentially mitigate concerns about recommendations for less aggressive treatment options due to underlying disability – such as those reported by participants.

Our findings suggest that cancer treatment did worsen functional impairments for some participants. The trend towards increasing cancer survival rates warrants greater emphasis on cancer rehabilitation services both during and post-therapy, especially for populations at risk for greater cancer-related morbidity, including people with pre-existing mobility disability. Cancer rehabilitation can address pain, musculoskeletal problems, lymphedema, deconditioning, endurance deficits, balance difficulties, falls, fatigue, and reduced ADL function.²⁸

Studies on cancer rehabilitation in older adults, a population that is also more likely to have pre-existing functional impairments, suggest underutilization of cancer rehabilitation services. A survey of 529 older adults with cancer found that 65% had functional impairments post-therapy, but only 9% received rehabilitation services such as occupational or physical therapy.²⁹ Barriers to receiving rehabilitation during and post-cancer therapy include:³⁰ lack of systematic screening of cancer patients for functional impairments (e.g., via patient-reported outcome screening processes across oncology centers); insufficient referrals and coordination with rehabilitation services; and inadequate consensus about patient safety concerns such as for exercise referrals (e.g., determining whether patients need additional medical clearance before referral to exercise programs). Addressing these barriers can improve long-term outcomes and health-related quality of life.

Physical accessibility barriers in clinical settings (inaccessible exam tables, weight scales, imaging technology) are well documented in the literature,³¹ and study participants highlighted direct implications for process of cancer treatment. For example, inaccessible tables for radiation therapy increase difficulty with positioning, compromising treatment delivery. Inaccessible diagnostic equipment, such as CT and MRI scanners, can interfere with patient positioning and image quality, affecting assessment of cancer status and subsequent treatment decisions. Inaccessible hospital rooms make it difficult for patients to manage basic needs and pose challenges for treatment recovery (e.g., after surgical resection). Consulting rehabilitation specialists or disability access coordinators about ways to accommodate patients with various functional limitations in clinical settings can mitigate challenges with process of cancer treatment imposed by physical barriers.

Although consultation with rehabilitation specialists could mitigate some physical barriers, people with disability may still experience unmet needs during treatment. Interviewees described unmet needs relating to basic but critical clinical concerns, such as lack of knowledge and awareness about risks of pressure injuries during hospitalization, lack of urinary catheters, lack of assistance with daily bowel programs, and inadequate preparation for ensuring that basic needs are met when a person with disability is quarantined in a hospital room. Most importantly, interviewees described attitudes among clinical staff towards disability accommodations as posing a critical barrier for addressing needs. Provider strain and burnout from system demands may explain some inadequacies in care and could contribute to problems in communicating with patients. Nevertheless, these observations suggest the need for disability training among clinical staff.²⁰ The hospital disability access or ADA coordinator should be identified prior to initiating cancer care, to work with staff on needed accommodations and equipment, and advocate for the person’s disability-specific care needs during hospitalization or outpatient appointments.

Limitations

Our findings have limitations, notably generalizability to patients with different disability and cancer combinations. The interaction between different disability and cancer types may produce vastly different treatment experiences, further influenced by patient characteristics such as age, gender, race, ethnicity, language, and socioeconomic status. The opt-in recruitment strategy may have resulted in some participation bias, limiting our ability to understand a variety of treatment experiences. Patients with disability who experienced greater dissatisfaction with their care may have been more interested in participating in this project (i.e., to voice) their concerns, thus biasing our study sample. Additionally, patients with very complex disability and/or advanced cancer stage may have had little interest in participating in a research interview.

Furthermore, given that our study exclusively focused on patients’ perceptions of their care, our findings cannot capture other issues that interviews with healthcare professionals would have raised. Nevertheless, our findings identify salient concerns that are highly transferable to practice settings and can inform efforts to improve quality of cancer care for people with mobility disability. For example, the lack of participants describing specific experiences with rehabilitation during cancer care, despite evidence that participants would have likely benefited from greater emphasis on rehabilitation, suggests a potential gap in rehabilitation service provision for this patient population before and during cancer treatment.

Conclusions

We found that people with pre-existing mobility disability experience barriers to cancer treatment, compromising quality of care and prospective outcomes. Though treatment may exacerbate mobility difficulties, functional limitations should not automatically limit treatment options. Although we did not directly study the involvement of rehabilitation specialists in cancer care, our findings nonetheless suggest benefits of rehabilitation for some patients – from prehabilitation to post-treatment recovery. Further study must explore whether increased care coordination between oncologists and rehabilitation specialists can improve overall outcomes for patients with pre-existing mobility disability who develop cancer.

What is Known/What is New.

What is Known:

Prevalence of some cancers appears higher among people with mobility disability compared to the general population. This population confronts persisting barriers, including clinicians with little experience caring for people with disability.

What is New:

This is the first study using in-depth interviews to explore experiences of people with pre-existing mobility disability with treatment for various cancers. Findings suggest that mobility disability complicates treatment decisions. Concerns about exacerbating functional impairments influence clinicians’ treatment recommendations and patients’ preferences. Physical access barriers and erroneous attitudes complicate treatments. Involvement of rehabilitation medicine experts could potentially mitigate some of these concerns.