We live in the age of tech-savviness where I can hail a ride or order food at the touch of a button. But when I move across the country and transfer my medical care to a new provider, I’m expected to bring paper copies of all of my medical records and succinctly describe my detailed and complex medical history in 30 seconds.
That can be especially hard for cancer survivors, like me, who often have long, complex medical histories. And it’s something we’d do well to remember and address.
The seminal 2006 Institute of Medicine (IOM) report “From Cancer Patient to Cancer Survivor—Lost in Transition,” first brought to light the unmet needs of patients as they transitioned from active cancer treatment to the post-treatment “survivorship” phase. It also acknowledged the complex, unique health care needs of cancer patients and survivors that often require the involvement of many medical providers—cancer specialists, primary care providers, and specialists like cardiologists. But it’s been over a decade since this landmark report was published. Sadly, to this day, we still do not deliver comprehensive, coordinated care to every patient.
That’s a bigger problem than you might think.
This year alone, 1.7 million adults and 11,000 children (ages 0–14) in the United States will be diagnosed with cancer. Up to half (or more) may have at least one other chronic health condition at cancer diagnosis, like hypertension or diabetes, which requires even more organization of patient care. Another 16.9 million people are cancer survivors, including half a million survivors of childhood cancer.
Cancer survivors face unique health care needs because of the negative health effects brought on by chemotherapy, radiation, surgery and/or other therapies. These effects can manifest during, shortly after or many years after treatment. In fact, two thirds of adult survivors of childhood cancer are at risk of developing a chronic condition as a result of cancer treatment.
Physicians cannot take away the risk of potential health problems from the lifesaving treatments needed to cure their patients of cancer. But patients deserve to receive high-quality care to be as healthy as possible.
The IOM report recommends that patients receive a comprehensive care summary with a follow-up plan and coordinated, interdisciplinary survivorship care. A simple one-to-two–page survivorship care plan can outline the treatments received and the tests and follow-up care needed to screen for recurrence and other health effects from treatments. Yet, many patients do not report receiving a survivorship care plan to help them coordinate their care.
Too often, patients are lost after their treatment ends and have many lingering questions. Which doctor should I see to make sure the cancer has not returned? Who is supposed to help control chronic pain or depression or other effects from cancer treatment? And who should I see for ongoing preventive care or when I have a cold?
These are questions that I’ve asked myself. As a survivor of childhood cancer, I struggled to get the care I needed when I aged out of pediatric oncology to adult medicine, when health insurance coverage changed with a new job and when new providers were added to my care team. The last time I transferred care to a new primary care provider, the doctor asked me “So, everything is okay with your cancer history?” That’s not an adequate question. I wasn’t asked for a survivorship care plan, which treatments I received, or if I had any ongoing effects from treatment. As much as cancer survivors may not want to talk about their cancer history (and relive the experience), we do need to make sure our medical providers are aware of our medical history and on top of current survivorship guidelines.
And let’s not forget the role of health insurance and out-of-pocket costs that cause patients to forgo or skip necessary medical care. “This can cause further frustration to both the provider and patient when receiving denials for a needed treatment or labs and imaging for surveillance,” Sonia Morales a hematology/oncology fellow at Children’s Hospital of Orange County, explained to me. “Oftentimes the general population do not need mammograms nor bone Dexa [dual energy x-ray absorptiometry] scans until they reach an older age. However, many times cancer survivors are in need of these services as prior treatments can cause secondary late effects such as another cancer or osteoporosis.”
The financial effects from cancer can also be long-lasting, including stress, loss of income, debt, bankruptcy and change in job status or career goals. And all of this is even harder for racial/ethnic minorities and individuals with fewer economic resources who still have poorer cancer care and cancer outcomes than their white peers.
Of course, recent tech advances have made it to the health care industry too. Electronic health records, or EHRs, are getting more and more common, giving providers a tool to record and track patients’ health information and giving patients access to a digital copy of their information. Yet too often patients cannot get their EHRs from one medical provider to communicate with another medical specialist. This can be true even in the same health care system. And for cancer survivors, this may mean medical information located on different apps and websites for each provider.
It’s time we focus on helping patients thrive during and after cancer with coordinated care focused on each patient’s physical health as well as their psychological, social and financial well-being.
And to accomplish that, innovative thinking will be required. New models of care delivery, like patient-centered medical homes and accountable care organizations, are focused on reshaping the health system by organizing the delivery and coordination of patient care activities. These include sharing EHRs with all providers, co-locating providers and services in the same physical location, linking patients to community services and resources to meet their social needs (like food and housing), as well as, telemedicine and patient navigation. These new models also hold health systems and providers accountable for the health care outcomes of their patients. Investing more time and energy into these, and other ideas and innovations, is an important step in supporting our nation’s cancer survivors.
Health care is complex. But care coordination for cancer survivors would help millions get the care that they need and deserve. And it can serve as a model for optimal care delivery for patients with other health conditions, so nobody will be asked to recite their medical history in 30 seconds again.