Written by Amelia Baffa and Whitney Hadley
Whitney B. Hadley, MA, MSW, LSW is an AYA Support Specialist and Community Outreach Coordinator at Angie Fowler Adolescent & Young Adult Cancer Institute – UH Rainbow Babies & Children’s Hospital
Note: Whitney is a 22 year childhood cancer survivor so she knows a thing or two.
This article is based on a panel discuss: Conversation about Childhood Cancer and Survivorship:at the Coalition against Childhood Cancer (CAC2) Annual Summit at Nationwide Children’s Hospital in Columbus Ohio on June 18-20, 2019.
What do you think of when you think of childhood cancer and survivorship care? Ideally it might conjure up images of a team of medical professionals working as a finely tuned pit crew to meet you where you’re at physically, mentally, emotionally, and spiritually after you achieve survivorship status. For most cancer survivors to transition to “survivorship” means they are two to three years off treatment and require ongoing surveillance; or as some individuals put it “cancer reconnaissance.” This pit crew would work together in an environment that is geared toward meeting your needs, it would be comfortable, informative, and your team would communicate with each other and most importantly with you. The visits would, in an ideal world, offer comprehensive care. Your pit crew could be made up of the following dream team members; a survivorship physician, nurse practitioner, social worker, dietician, neurologist, endocrinologist, psychologist, fertility /reproduction specialist, physical therapist, child life specialist, and chaplain.
Now imagine, after your annual “tune-up”, when you’re ready to leave this super supportive place you actually get to take a summary of your visit home with you. This is mind blowing! You actually understand what your exposure risks are (referring to how much cumulative [total dose] chemotherapy/radiation you had during therapy) and you know what you should be looking for moving forward. While we are at it, how about this: the team shares your survivorship visit information with your primary care physician ( after you sign a release of information allowing them to do so, of course!) and any other physicians or providers on your team, so that everyone caring for you has the same information from preventative health and maintenance to surveillance.
The need for long-term follow-up for childhood cancer survivors is supported by the American Society of Pediatric Hematology/Oncology, the International Society of Pediatric Oncology, and the American Academy of Pediatrics, the Children’s Oncology Group (COG), and the Institute of Medicine. A risk-based medical follow-up is recommended, which includes a systematic plan for lifelong screening, surveillance, and disease prevention. Everyone should get a copy of the survivor’s owner’s manual and maintenance record, so that they know when to stop, check the oil and rotate the tires. Some of you may have what is called a Passport for Care https://cancersurvivor.passportforcare.org/ this is your survivorship care plan. Unfortunately, less than 30% of the childhood survivor cancer population have access to a comprehensive survivorship clinic. So what if you never received a copy of an owner’s manual individualized for your particular cancer make and treatment model? No worries; check out the Children’s Oncology Group Long Term Follow-Up guidelines for Survivors of Childhood, Adolescent and Young Adult cancers. These guidelines are located online at www.survivorguidelines.org.
The guidelines provide the following information:
These guidelines were developed as a resource for clinicians who provide ongoing healthcare to survivors of childhood cancer. According to the Children’s Oncology Group, the guidelines are useful for asymptomatic survivors of childhood, adolescent and young adult cancers, presenting for routine exposure based on medical follow-up. They also provide information to conduct more extensive evaluations as clinically indicated for survivors presenting with signs and symptoms that suggest that they might have an illness or organ dysfunction. The guidelines also offer health links that discuss topics such as: diet and physical activity, educational and emotional issues, how to find a healthcare plan, and an introduction to long term follow up. They offer a review of every organ system in the body that could potentially be effected by late effects. A disclaimer here: the guidelines are intended and written for healthcare professionals, so the COG highly recommends you review them with the assistance of a healthcare professional who is knowledgeable about long-term follow up care for survivors of childhood, adolescent, and young adult cancer.
Now let’s say you started out this race in the minor league circuit (aka pediatric cancer center) and once you hit 18 you “transition” to the major leagues (aka adult care provider). Many childhood cancer survivors experience this phenomena. Transitions are defined as passages from one state, stage, subject, to another, it involves movement from one form to another. In this situation we are referring to the space in-between adolescence and young adulthood. You may have experienced this, in another way: one day your parents are making decisions for you, and the next day you it’s up to you. As a survivor this can mean that you may have an entirely new pit crew. These adjustments can cause individuals to experience anxiety and confusion.
Once you turn 18 years of age, you are no longer considered a minor, you are legally an adult, so your team will be looking to you to make decisions. In a healthcare environment this could include completing your advance directives and health care power of attorney, informed consent, and making your own treatment decisions. This can be both exhilarating and daunting. Parents and caregivers may also find this “transition” period difficult as they relinquish parental control and decision making as their child changes lanes from childhood to adulthood.
There is evidence to support “Transition Programs” to help young adults make the move from pediatric to adult oriented healthcare systems. According to the Canadian Task Force on Adolescent and Young Adult (AYA) Cancer (2014) these programs should include clear policies on transition on things such as: the timing of the transition, preparation and education for the patient, possession of a survivorship care plan, receptive and capable adult services, and collaboration between pediatric and adult oncology teams, administrative support and integration of primary care providers. The American Society of Clinical Oncology ( ASCO, 2010) recommendations support assisting AYA survivors in developing appropriate self-management behaviors, including health literacy, coping skills, and understanding treatment implications help to make successful transition to adult settings/or providers. Collaborative efforts to bridge the gap might include joint team meetings, bilateral support on tumor board agendas, information exchange, or dual appointments. The task force also recommended that “education, empowerment, support, and resources for the survivors and parents are fundamental to ensure the appropriate communication of treatment history and late effects risks to new care providers so that they can deliver the appropriate long-term follow-up.”
Childhood cancer survivors may lose touch during this transition phase for the following reasons: relocation, attend college out of town, or simply not being aware that they should attend survivorship clinic visits as part of their ongoing health maintenance. It is risky to underestimate the potential of serious cancer related health problems and not adhere to long-term follow up visits over their lifespan. According to the National Institute of Health childhood cancer survivors frequently experience life-altering morbidity related to effects of cancer treatment on endocrine, reproductive, musculoskeletal, and neurologic function. The prevalence of late effects increases as time from cancer diagnosis elapses. Research has demonstrated that among adults treated for cancer during childhood, late effects contribute to a high burden of morbidity, 60% to more than 90% develop one or more chronic health conditions, and 20% to 80% experience severe or life-threatening complications during adulthood.
So, what happens when you are driving down the proverbial road of life and need to make a pit stop that’s not cancer related? Where do you go? This is another area of “transition” for many childhood survivors. It’s incredibly important to establish a relationship with a primary care physician (PCP). A primary care physician provides continuous medical care. They are trained in a wide variety of health-related problems, they are oriented toward general health maintenance and disease prevention and refer to specialists as needed. They can collaborate with your medical oncology team to provide ongoing medical care that is informed of potential risks of late effects. Think of it this way, you want every member of your pit crew to have access to pertinent information so that you can stay in the race. Your PCP is part of your crew, make sure they have a copy of your survivorship care plan too.
You got this, you are in the driver’s seat. You might be wondering, this is great but how do I stay on track if I don’t have a pit crew? The good news is you can put your own crew together. Where to start? We’d recommend starting with securing a copy of your survivor owner’s manual. The COG recommends that you’re Cancer Treatment Plan should include the following information:
You’ll want to reach out to your treating physician and or the clinic where you were treated and request copies of your records. While you’re at it ask them to complete your Cancer Care Plan. You can also download and print a blank survivor care plan from ASCO at www.cancer.net and the American Cancer Society at www.cancer.org. Our friends at Triage Cancer have created a short video https://vimeo.com/347517561 on this topic it explains what survivorship care plans are, what should be included in them, and how to get one. Be sure to share the owner’s manual with all member of your crew which includes any physicians or providers who are taking care of you, like PCPs, and any specialists you may be seeing. Stay on track, follow the owner’s manual, work with your pit crew on a regular basis, and never forget that you are in it to win it!