Navigating patients with hematologic malignancies is fraught with its own unique challenges, but to be successful, multidisciplinary collaboration is essential, according to Peg Rummel, RN, MHA, OCN, NE-BC, oncology nurse navigator at Abramson Cancer Center in Philadelphia, and Joyce Mitchell, MSW, LSW, oncology social worker at Abramson Cancer Center Perelman Center for Advanced Medicine.
At the 2021 AONN+ 12th Annual Navigation & Survivorship Conference, Ms Rummel and Ms Mitchell shared why patients with this particular malignancy are often different from others, and how navigators and social workers can prepare themselves to guide their patients through some of the barriers associated with having hematologic cancer.
“The landscape of hematological malignancies is changing rapidly, and from a healthcare perspective, it’s so great to see the changes that have happened and the many options that we can now offer our patients,” said Ms Rummel. “But at the same time, that makes things a little bit challenging for all of us. I couldn’t navigate these patients without the support of my social workers, my nutritionist, and all of my other team members.”
Care Coordination Is Key
Each hematologic disease has its own nuances, underlining the importance of a collaborative approach.
“You have to know your multiple myelomas, your lymphomas and your leukemias, as well as how they present, and what the needs of those patients are,” she said.
Triage of referrals—for things like clinical trials, transplant, or CAR T-cell therapy—presents one particular challenge in navigating these patients. “Make sure you have the information you need to triage and get the patient to the correct provider,” she noted. “Testing is important, and tissue is the issue, because not everything that shows up on a scan as a lymphadenopathy is a lymphoma, and not every lytic lesion is multiple myeloma.”
Coordinating appointments for patients—including with medical oncology, radiation oncology, nephrology, primary care providers, etc—is crucial, as is conducting a nursing assessment and taking stock of the patient’s social situation.
“We have patients who come from a great distance to our cancer center, but they want to get treated locally, so connecting them back to their local providers and networking with my other navigator colleagues across the country is vital to setting these patients up and making sure that the transition of care is really smooth,” said Ms Rummel.
Coordinating ancillary appointments for these patients (ie, dental, pulmonary, cardiology, surgery, orthopedics) can be another hurdle. For example, patients on bisphosphonates may need ongoing dental care.
“Coordinating dental care is probably one of my biggest challenges, especially since many of our patients don’t have dental insurance,” she noted. “Prior to starting therapy, it’s often a challenge to find resources to help these patients get what they need so they can get started promptly on treatment, so it’s really important as a navigator to know who your point people are in these departments.”
Referrals to supportive care services are another necessity for many patients with hematologic malignancies. Services like social work, counseling, nutrition, massage therapy, occupational therapy, integrative therapy, and skilled nursing help to make sure the entire patient is being treated, not just the patient’s cancer.
Providing education to patients about all of the treatment options available to them is another important step in their navigation. “I get phone calls all the time from patients with all kinds of questions,” she said. “They tell me they call me because they know I’ll answer the phone and talk to them.”
Meeting the patients where they are and assessing their goals of care is critical to meaningful navigation and can support shared decision-making. “Maybe a patient has been in treatment for 10 years and no longer wants to pursue more treatment,” she said. “So I encourage my patients to be honest with their providers and have a discussion about what they truly want out of all of this.”
Barriers to Navigation
According to Ms Mitchell, transportation and lodging are some of the biggest barriers to navigating patients with hematologic malignancies. Patients are often coming from areas without public transport, so grants with rideshare companies like Uber can be a massive help.
Financial toxicity is another huge issue for these patients, so anticipating these issues and connecting patients with financial advocates and navigators to help them navigate the complicated world of insurance is often necessary.
“Along with the financial toxicity comes the fact that patients may be referred to us but don’t have insurances within network,” added Ms Rummel. “So again, it comes down to connecting them back to providers within their network or getting them to talk to their insurance companies.”
Educating patients to advocate for their own needs and connecting them to support groups are other vital steps in their cancer journey. “These support groups do more than address the psychosocial needs of patients,” said Ms Mitchell. “They also educate patients on how to do things like connect with their pharmacist or social worker, or how to connect with their doctor if they feel like they’re not being heard.”
Patients are navigated to a number of different types of support groups at Abramson Cancer Center, including a group for newly diagnosed patients, a women-only group, an LGBTQI group, a group for young adults with advanced cancer, a friends and family support group, a caregiver group, and a smoking cessation group, as well as meditation-, music-, and yoga-based support groups.
A group called What’s the Meaning of This helps patients to find meaning in their lives, no matter where they are in their cancer journeys. A Look Good, Feel Better group focuses on body image after a cancer diagnosis. They have even started a Pets and People support group. “We’re finding that some of our patients who live by themselves really have just their pets as their social providers, and that’s really important,” she added. “This companionship helps to alleviate some of the issues with depression and anxiety.”
Psychosocial needs assessments help social workers and navigators to figure out and address patient concerns, but according to Ms Mitchell, this is really just a fancy term for having meaningful conversations with patients, their families, and their caregivers.
Isolation was a concern for these patients even before the COVID pandemic, often due to significant life changes like divorce, substance abuse, or other psychosocial issues, noted Ms Mitchell.
Because many of these crucial resources may have been temporarily or permanently shut down during the pandemic, Ms Rummel added, navigators and social workers are more crucial than ever in helping patients with hematologic cancers to get what they need, and to navigate their cancer journeys with dignity.
