Q&A: Supportive care in young adults with leukemia
Healio spoke with Nikki Yuill, LCSW, and Michelle Rajotte, LMSW, the director and associate director of The Leukemia & Lymphoma Society’s Information Resource Center, about the importance of supportive care in young adults with leukemia.
Healio: What does supportive care look like in young adults with leukemia?
Yuill: Supportive care is designed to help young adult patients with blood cancer through their initial diagnosis and beyond into survivorship. It can help with navigating their diagnosis through the physical and emotional effects it imposes, as well as provide guidance on how to advocate for themselves and prepare them with questions for their medical team. It is also important to provide support to their caregivers and support system and identify who they are. The Leukemia & Lymphoma Society (LLS) provides a wide range of free support, education, and resources such as trackers and workbooks for young adults and their loved ones.
Healio: What is the importance of providing supportive care in this patient population? When should clinicians refer young adult patients with leukemia to supportive care?
Yuill: LLS knows that a cancer diagnosis can bring plans to a screeching halt — especially for young adults between the ages of 18 and 39. This patient population includes individuals who are often embarking on new journeys or pursuing personal and professional goals. Supportive care should start from the minute they are being worked up for a possible cancer diagnosis. We know that providing emotional, social, educational and financial support early on can have a positive impact on the quality of life and quality of care young adult patients receive. The physical effects from disease and treatment, as well as psychological and psychosocial effects, can be detrimental. Treatment can be isolating, physically and emotionally, and might cause long-term health complications such as an increased risk for developing a second cancer later in life, compromised organ function and fertility issues.
Rajotte: This is especially true toward the end of treatment when patients are looking at getting “back to normal” and many do not realize the emotional and sometimes physical challenges that these pose.
Healio: What challenges are more common in young adults with leukemia compared with other patient populations?
Yuill: LLS understands the unique concerns and needs specific to young adults who have been diagnosed with or have survived leukemia, lymphoma or other types of blood cancer. It might be their first time experiencing a serious illness and they might feel uncomfortable talking about their diagnosis with others. Or they might have questions about what to expect during and after treatment. Young adults facing an acute leukemia diagnosis often require intense treatment regimens, and may have prolonged stays in the hospital and take long leaves from work or school. Young adults are more likely to be uninsured and experience more financial burdens. Fertility is another area likely to be affected by treatment, and it is important for patients to know how to advocate for themselves. Friendships, body image and social relationships/dating is another area that is affected by a cancer diagnosis and treatment.
Rajotte: Those with a chronic leukemia are possibly looking at taking medication for the rest of their lives or always knowing it can return at any time, given the nature of a chronic leukemia. There is also the financial burden of having to pay for medication and be monitored indefinitely. This comes with an emotional challenge as well — knowing you may never be cured.
Patients on the younger end of the young adult spectrum, while legally considered adults, might need support in navigating care on their own, including information about what questions they should be asking their health care team. It could be helpful to have a parent, or another loved one with them when meeting with their doctors. It is important to have a support person to help listen and better understand the diagnosis and treatment plan. They are often novices and less experienced at handling things like health care on their own, and having someone there with more experience for support can be beneficial emotionally and assist with important decision making.
Healio: How does supportive care in young adults with leukemia differ from pediatric and older adult patients?
Yuill: While there are some concerns related to a blood cancer diagnosis that are universal no matter the age of diagnosis, as mentioned above, there are specific concerns for young adults, particularly fertility.
We must also take into consideration how they want to and feel most comfortable receiving critical support. For example, older adult patients might prefer speaking with an LLS information specialist by phone. In a time where many things are driven by digital communication, young adults might feel more comfortable communicating online.
LLS offers one-on-one live chats, hosts a live weekly online chat group for young adults moderated by one of our information specialists, and has a dedicated Young Adult group in our online forum LLS Community. LLS’s Patti Robinson Kaufmann First Connection program pairs patients with a trained peer volunteer who has gone through a similar experience.
Rajotte: Young adults are at a time in their lives where they may be starting or have families with young children, and having the support and information on how to help their children and spouse cope is a huge need. Many patients have shared that they are also dealing with the psychological stress of both having to care for young children while being treated and worrying if they are going to be there to see them grow up.
Healio: What are some unmet needs in supportive care among young adults with leukemia?
Yuill: Access to mental health and psychosocial support resources for all [young adults], especially [young adults] belonging to a marginalized group or minority. Clear pathways and support resources when transitioning from pediatric care into adult care and, when transitioning off of treatment and into surveillance or long-term survivorship, resources to navigate long-term survivorship care needs including referral to specialists related to treatment-related risks. Access to palliative care that meets the unique needs of [young adults] and their families.
Rajotte: From all the feedback we have gotten from [young adults], it is essential for HCPs to prepare them BEFORE finishing treatment that life is not just going to go back to normal. They may begin reevaluating their life and need additional support. It is very important they encourage them to get both professional and peer intervention and support, and anything they can do to help this process ensures more success of the [young adult] following through. It is also important for caregivers/loved ones to recognize this as well and not put unintentional pressure on the [young adult] to try and be who they were before they were diagnosed. PTSD is real for cancer patients, but it is seen frequently in [young adults] after cancer treatment.
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