What does it really mean to bring a quality-of-life agenda to oncology care? A recent article published in JAMA Oncology by Parikh and colleagues highlighted the need to include impairment-driven cancer rehabilitation as a key component of quality of life.1 This is consistent with both the medical literature and with what patients want.
Survivor Jo Jo LaFretta says, “Cancer rehabilitation gave me back my quality of life.” In the fall of 2014, Jo Jo led a security team that protected celebrities backstage, when she suddenly experienced severe abdominal pain. After visiting the emergency department, she eventually received a diagnosis of advanced bladder cancer and underwent neoadjuvant chemotherapy, surgery, and more chemotherapy. Within a few weeks, Jo Jo went from working in a mentally and physically challenging job to becoming totally disabled and barely able to climb a flight of stairs. "I was moping, tired, and had anxiety. I was concerned I wasn’t going to be strong enough to fight this.”
Jo Jo’s oncologist referred her for cancer rehabilitation with the Medical City Dallas Hospital’s STAR Program. This was a major turning point for her, both physically and psychologically. She recalls, “When I started to push myself physically, I realized that I was strong enough to fight this. Mentally and emotionally—the STAR Program rehab gave me the inner strength to fight this battle.”
Delivering High-Quality Rehabilitation Care
Pete Manning is the general manager of Oncology Rehab Partners, the healthcare company that developed the STAR Program—a turnkey solution that allows hospitals, healthcare facilities, and cancer centers to establish an interdisciplinary, best practices, reimbursable oncology rehabilitation service line (Table). He says one of the biggest challenges hospitals and health systems are facing is how to deliver high-quality cancer rehabilitation services that improve patient outcomes and satisfaction, yet fit into value-based delivery models. “It’s important to have data-driven solutions that support patients, hospitals, and payers.”
Here’s an example of how one STAR Program has been able to achieve this. The program focuses on dual screening, for both emotional distress and physical impairments, and uses unique screening tools to help practitioners effectively identify which patients will benefit from rehabilitation services. Speech therapist Joan Jeanetta, a rehabilitation director and the STAR Program coordinator at Essentia Health in Duluth, Minnesota, recognized that if these screening and data collection tools were hardwired into Essentia’s electronic health records (EHRs) system, they could move mountains. “We hardwired into EPIC the screening and functional outcomes tools that the STAR Program recommends. Then, we created a 10-minute EPIC/STAR Program training module to teach more than 150 members of our team how to quickly access the tools and input the right information. Not surprisingly, this 2-pronged strategy of hardwiring the data collection process into the EHR, followed by efficiently training our team on how to quickly input the right information, has transformed our ability to collect and analyze data related to our patients’ physical and functional outcomes.”
Survivors Advocate for Cancer Rehabilitation Care
Cancer survivors are often very vocal advocates for their healthcare, and many are pushing back on settling for a “new normal.” Many women treated for breast cancer have problems with the function of their upper extremities and actively seek out rehabilitation care. A C-suite executive and breast cancer survivor sent this email through the Oncology Rehab Partners’ website: I was on your website and first I wanted to say thank you. I am 2 years cancer free after a diagnosis of Stage 3C breast cancer. I have days when I can barely use my hands, and I have been told this is the new normal. I LOVE my team at [hospital name withheld for this article] and credit them with saving my life, but I REFUSE to believe this is the new normal as I am not even 50 years old. Thank you again so much, you have no idea how excited I am that there may be a way for me to get rid of some of this pain that doesn’t require popping a pill!
Nurses are often well positioned to advocate for and help direct patients to cancer rehabilitation services. Gale Mason, NP, MSN, MPH, directs the Survivorship Program at Pioneer Valley Oncology/Hematology and Mercy Medical Center in Springfield, Massachusetts. She says, “The STAR Program provides an extraordinary service to our patients by helping restore their quality of life. The service to us as practitioners is that it expands our knowledge base beyond disease-focused care to survivor-focused care.” Kimberly Willford, BSN, RN, OCN, a patient care coordinator at ProMedica Fostoria Community Hospital in Fostoria, Ohio, agrees. “Our team is committed to taking care of the person, not just the diagnosis.”
For Jo Jo LaFretta, rehabilitation was a highlight in her cancer treatment, and she looked forward to her appointments with the physical therapist 3 times a week. Jo Jo recently moved to another state, near 2 of her sisters. When she walks out her door, she can see their condos. She describes going for long walks, running on the beach, and planting roses in her garden. Jo Jo reports, “I’m looking forward to being the person I used to be. I’m 90% there.”
Julie Silver, MD, is an associate professor at Harvard Medical School and a founder of Oncology Rehab Partners, which developed the STAR Program (http://star programoncologyrehab.com/).
1. Parikh RB, Kirch KA, Brawley OW. Advancing a quality-of-life agenda in cancer advocacy [published online May 21, 2015]. JAMA Oncol. doi:10.1001/jamaoncol.2015.0925.