At Harbor-UCLA Medical Center, a safety net hospital for L.A. County, Hanjoo Lee, MD, FACS, FASCRS, specializes in colorectal surgery. On a recent day, he treated three patients with intellectual and developmental disabilities.
He struggled to communicate with one woman whose attention was diverted every five seconds. She had been diagnosed with rectal cancer six months ago at a different hospital and visited various medical centers whenever she was bleeding.
“She should have started chemotherapy or radiation months ago,” said Dr. Lee. “But she lacks the mental capacity to fully comprehend that.”
A new study from Dr. Lee and his colleagues highlighted the disparities in outcomes after colorectal cancer surgery for patients with intellectual and development disabilities (IDD), which includes conditions such as cerebral palsy, down syndrome and autism spectrum disorder.
They analyzed nearly three-quarters of a million patients from a national database and found that the patients with IDD had a higher burden of comorbidities, faced increased mortality, spent significantly greater time in hospital, and accumulated more associated complications and costs.
Below is an edited conversation with the authors of the study, Dr. Lee, an assistant professor of surgery, and Ayesha Ng, MPH, a fourth-year medical student, both at the David Geffen School of Medicine at UCLA.
Let’s start with the most significant outcome you found. In-hospital mortality was 3.7% for IDD patients and 1.9% for the general population.
Dr. Lee: The numbers are low for both groups, but the IDD patients have two-fold increased odds of mortality – which is quite significant. Numerous social factors significantly impede their ability to access appropriate and timely medical care.
Timely treatment is very important in these patient populations, especially in rectal cancer patients. They must have a series of CT scans, blood tests, MRIs, multiple colonoscopies; any misunderstanding and lack of access to these workups can delay the care and cause worse outcomes.
I'm saddened, but not surprised, to see their mortality significantly higher.
What are the risk factors or co-morbidities that patients with IDD have?
Ng: We saw that patients with intellectual and developmental disabilities have a larger number of pre-existing physical and mental health issues, which is a big risk factor for adverse outcomes. Another key finding was that they more often presented with non-elective (urgent/emergent) admission. Progression of cancer may have resulted in bowel obstruction, perforation, or to an advanced stage of disease that lends itself to an emergent presentation.
The fact that these patients are presenting emergently indicates that they are likely having delayed diagnoses of colorectal cancer and not getting sufficient pre-operative care that they need before surgery, ultimately leading to adverse outcomes.
Dr. Lee: We also had adjusted for the increased co-morbidities in our study. You could argue that these patients are sicker, therefore their outcomes are sicker. We actually adjusted for that. And yet we still see worse outcomes.
Previous studies have shown that screening rates for colorectal cancer are low for patients with IDD. Why is that?
Dr. Lee: We recommend screening at 45 years of age. But it takes several appointments with your primary care provider or gastroenterologist. Pre-endoscopy education is crucial to understand bowel preparation and dietary restriction prior to colonoscopy. It is essential to have a clear understanding of the reason for your screening and the steps required for proper preparation, including the expectation of 24 hours of continuous diarrhea and how to manage it effectively.
Ng: People with intellectual and developmental disabilities are a particularly vulnerable population. Underutilization of screening is a reflection of the barriers in access to care for this population. They often face difficulties with low income and social barriers like isolation and stigma, making them unable to access the care that is typically available to the general population.
You mention a few of the study’s limitations, including its retrospective nature as well as the unknowns about the time of diagnosis and the stage of disease. How does that impact your results?
Ng: The database we used only captures information during the duration of hospitalization. All of this data is captured with inpatient administrative codes and did not capture any outpatient information, which includes all of the pre-operative evaluation. When did they actually diagnose their cancer? Did they receive chemotherapy and radiation therapy before the surgery and for how long? We also don't know whether they were screened for colorectal cancer.
The adverse outcomes we observed are likely due to inadequate pre-operative care coordination. Not being able to get a timely diagnosis for patients with disabilities can be a significant impediment to the rest of their cancer care down the line, including their surgery. We were not able to fully capture the extent to which patients with disabilities face gaps in colorectal cancer care.
Dr. Lee: We also see that in the stage of diagnosis, patients with IDD present with a more advanced colon cancer. Colon and rectal cancer typically is a very slow-growing cancer. They start from a small polyp. It may take around 10 years to form a cancer, then proceed to stage 1, 2, 3 and 4. So by presenting a later stage, we can infer that they're also being screened or diagnosed at a later time.
Unfortunately with colorectal cancer, by the time you have symptoms, the disease is often in an advanced stage. Rectal bleeding is typically the first noticeable symptom. As the cancer progresses, they may experience worsening bowel movements or increased bloating due to obstruction. But if the patient is unable to communicate, “I'm seeing blood in my toilet” or “I am having a harder time passing stool,” then they may not receive timely care.
In patients without IDD, these symptoms are typically reported to their primary care doctor early on. Unfortunately, patients with IDD will probably be less likely to do so, and instead present at a later stage, which probably contributes to worse outcomes. That’s listed in our study limitations because the stage of cancer itself was not able to be determined, but we can infer that from other previous studies.
What are your reflections on treating patients with IDD in your clinical care?
Dr. Lee: The expression I commonly use with my residents is that I feel like an ant with a mountain in front of me. So I try to compartmentalize what I can do and what I cannot do. We try to do the best we can with what resources and time we have, and sometimes that's all you can do.
Our team sometimes gets exhausted because it is very difficult to help patients who cannot help themselves. It takes a lot of resources, attention and time.
I believe the challenges of treating patients with IDD are under-researched and this patient population does not receive sufficient attention in the medical community.
Ng: I was inspired to do this project by one of my experiences in the surgery clinic, treating a patient with autism for the first time. This patient was a young adult in his 30s but required support by a caregiver, and seeing this was new to me. He was very anxious with lots of questions, but very fortunately, the caregiver was incredibly helpful in giving context to us as providers.
This patient's lived experience with autism and his baseline level of health is important to us when thinking about pre-operative evaluation for surgery, which can be a big moment in their lives. The interaction made a deep impression on me. It is such a big mountain for patients to climb, thinking about all their social barriers, facing stigma in the health care setting, and the historically built distrust that makes coming to the clinic really difficult for patients with intellectual disabilities.
What are your thoughts on how to reduce disparities and improve outcomes for patients with IDD?
Dr. Lee: Cancer navigators are an excellent resource, and our institution started utilizing them two years ago. Navigating through colorectal cancer care is very complex for all patients, making their role invaluable.
So I feel patients with intellectual and development disorders need a cancer navigator or another liaison. They are helping patients figure out logistic issues, handling the transportation issues, reminding them about clinic appointments, etc. There needs to be a better connection between the patients and their primary care physicians or their caregivers and the cancer navigators, so they can have more direct communication. That's something I want to see.
I created a cancer survivorship card after I got the idea from our breast cancer colleagues here. It’s an index card with the patient’s name, stage of disease, names of their primary care physician and surgeon, and what treatment they received, such as chemotherapy or radiation. When patients go to any other hospital, the providers can call and quickly connect through cancer navigators and their surgeons and primary care.
Surgery is only the first step in the journey for these patients. They require five years of ongoing follow-up care and surveillance. Many of our patients feel better and then fail to follow up. Continuous monitoring, including CT scans, blood work and physical exams is essential for their long-term health. The survivorship card will serve as a valuable tool to help facilitate this ongoing care.
Ng: Our findings highlight a need for broader, systemic change at the health policy level. For example, all health providers should have standardized training for how to evaluate and care for patients with intellectual disabilities. That could be a great start to increase awareness and provide the tools to care for the diversity of patients that we see as surgical providers.
Also, cancer navigators are largely only available to patients who can pay for these navigators to coordinate care. We need health systems-level interventions to make cancer navigators more affordable and accessible for patients with intellectual and developmental disabilities. Ultimately, quality improvement strategies should aim to work towards more equitable outcomes for the patients who need it most.
