Comprehensive Follow-Up Programs: A Necessity not a Luxury

by Nancy Keene & Kevin Oeffinger MD
Source: Fall 2002 CCCF Newsletter

We have written several columns on various aspects of survivorship after childhood cancer. Questions have flooded in to ACCO about some topics raised. In this column, we will answer some of the questions about follow-up clinics. Please feel free to email or call in questions to ACCO , and we will try to answer them in future columns.

What do you mean when you say 'follow-up clinic?' Can you describe one?

A comprehensive follow-up program helps survivors of childhood cancer stay well. The follow-up programs usually include a review of treatments received, counseling regarding potential health risks (or lack thereof), and case-specific diagnostic tests, such as audiograms (to evaluate hearing loss), hormonal studies, heart evaluations, or testing for learning disabilities. Follow-up clinics not only provide comprehensive care for long-term survivors, but also may participate in research projects that track the effectiveness of and side effects from various clinical trials. In addition, the follow-up clinic acts as an advocate for survivors at schools, insurance agencies, and employers.

Identifying, understanding, preventing, and treating late effects is an evolving field. Survivors need to keep coming back to a place where they can find the newest information. For example, for many years we didn't know the risk of Hepatitis C from transfusions. Now we do. So follow-up clinics need to test all survivors who received one or more transfusions prior to 1993. This could prolong and possibly save their lives.

Another focus of comprehensive late effects clinics is wellness education. For example, there are things survivors can do to prevent bone weakness - e.g., weight bearing exercise and calcium supplements. Survivors can help their hearts to function optimally by eating a low fat diet, exercising, and not smoking. Wellness education is crucial to help survivors stay healthy. So, even for survivors who are the picture of health--and there are many--a periodic visit to an expert in the care of childhood cancer survivors is vital.

In addition to evaluation of possible late effects and wellness education, comprehensive clinics also provide is a detailed summary of treatment. This should include:

  • Name of disease
  • Date of diagnosis and relapse, if any
  • Number of clinical trial, if enrolled
  • Place of treatment
  • Dates of treatment
  • Names of attending oncologist and primary nurse
  • Names and total dosages of chemotherapy agents used
  • Type, areas treated, and amount of radiation used
  • Name of radiation center
  • Date(s) radiation received
  • Amount of radiation and to what location, e.g., whole body, cranial, etc.
  • Dates and types of any surgeries
  • Date and type of bone marrow or stem cell transplant, if any
  • Any major treatment complications
  • Any persistent side effects of treatment
  • Recommended medical follow-up
  • Contact numbers for treating institutions

Going to a follow-up clinic is not about illness, but about life.

Why are follow-up clinics necessary?

Follow-up clinics are necessary because toxic treatments are used to cure childhood cancer. These treatments are given when bodies are growing and minds are developing. Some survivors develop no late effects from treatment, while others have mild, moderate, or severe late effects. These can develop during treatment, or months, years, or decades later. Comprehensive follow-up clinics provide these essential services:

  • Comprehensive health care
  • Health maintenance and education
  • Reproductive counseling
  • Educational and vocational counseling
  • Psychosocial support
  • Early detection and treatment of late effects

We believe that it is also importance for survivors to move to a wellness-focused clinic in order to start to feel "normal" again. There are many barriers to getting good follow-up care in a treatment-oriented setting. Many parents and children feel uncomfortable waiting with kids on treatment. Some have difficulty even walking into the building. Families may feel that their after-cancer problems aren't as important as those of children on therapy. They may feel uncomfortable telling the doctor who gave their children the treatment about late effects from those treatments. Many times, survivors feel that the only socially acceptable emotion they can express is gratitude. But, people can feel more than one emotion at a time. One survivor might feel enormously grateful for survival, but very sad about the loss of hearing that resulted. Parents might feel immeasurably thrilled that their child is alive, but terrified about the learning disabilities that have developed.

Another reason why follow-up clinics are necessary is that most pediatric oncologists are experts in treating children with cancer but may not be experts in late effects. As more and more is known about possible late effects, it becomes critically important to go to experts to identify and treat them.

When should a survivor start to go to a follow-up clinic?

Most institutions transfer care of survivors two years after treatment ends or five years from the time of diagnosis. So, if you had leukemia and were treated for two years, you would go to the follow-up clinic two years after treatment ends. You'll notice a big difference in the focus of the care. The visits to the oncologist after treatment ends focus on checking for recurrence of disease. Treatment at follow-up clinics focus on wellness and surveillance for late effects.

Reasons for institutions to create and fund such programs include:

  • Fulfill a moral and ethical obligation to patients.
  • Improves quality of life through early detection and intervention.
  • Offers support, guidance, and education.
  • Allows modification of current therapies to decrease the late effects for future generations.

What happens at a follow-up clinic?

At the first meeting, the team will stress the change in approach to care. The medical evaluation at the first meeting includes:

  • Chart review (the team does this before the appointment).
  • Doctor or nurse practitioner takes an updated family medical history.
  • Doctor or nurse practitioner discusses any medical changes since the last appointment.
  • Doctor or nurse practitioner does a physical examination.
  • Any necessary physical or clinical tests are done. For example, a child who received a moderate to high dose of an anthracycline may have an appointment to obtain an echocardiogram and an EKG. Or a Hodgkin's survivor who had mantle radiation eight or more years earlier might have a mammogram.

The psychosocial assessment includes:

  • Discuss school or work.
  • Talk about social functioning and any family stresses.
  • Recommend neurocognitive testing if indicated. Explain what this means to child and family.
  • Discuss any needed interventions. For example, the parents of a child who is struggling in school might talk with the clinic's educational liaison to craft a plan for getting the school to meet the child's educational needs.

Education of family and survivor includes:

  • Provide a summary of treatment for the survivor to take home.
  • Educate survivor about health maintenance (not smoking, exercise, taking calcium supplements, etc).
  • Discuss other ways to learn about survivorship (books, online support groups, local face-to-face support groups, etc).
  • Discuss the roadmap for future follow-up care.
  • Answer any questions.

After the appointment the doctor or nurse practitioner may send a letter to the survivor or the family reviewing the meeting and planning for the future. Some clinics give handouts as you leave the appointment include educational material and follow-up needs. Some clinics send a letter to the survivor's primary care provider to keep him or her up-to-date on the survivor's health status.

How can we find a follow-up clinic?

A group of parents developed a list of criteria for comprehensive follow-up clinics. These were:

  • Has a dedicated time and place for the follow-up clinic (not mixed in with kids on treatment). Since most hospitals cannot afford a separate building, they usually dedicate one or more afternoons a week just for long-term survivors.
  • Meets at least twice a month.
  • Staffed by a doctor with experience in the late effects after treatment for childhood cancer.
  • Has a nurse coordinator.
  • Provides state-of-the-art screening for individual's risks of late effects.
  • Provides referrals to appropriate specialists.
  • Provides wellness education.

Most of the institutions across the United States that treat children with cancer (over 200) were called and asked to describe their follow-up clinics. The clinics that meet the criteria are listed on this website: If you know of other institutions that meet these criteria, please let ACCO know.

Even if you don't live near one of these clinics, you can collect all of your records, and go for a one-time evaluation. Then the team can recommend a plan for long-term follow-up and communicate with the primary care provider (pediatrician for children, internists or family practice doctors for adults) when and if any questions arise.

How can we get our insurance to pay for the visit and any necessary tests?

Many follow-up clinics charge through the pediatric oncology clinic billing system. Since insurers are already used to paying bills to this clinic, they often pay without question. If they do decline to pay bills for follow-up visits, the team at the hospital can write them a letter explaining the need for care and providing technical articles to support that need. Insurers usually cover more physical needs than they do mental health testing or treatment. The team often has to work with insurers to get neurocognitive testing covered. Children with posttraumatic stress disorder may have difficulty getting therapy for an extended time paid for. Ask the therapist to write a letter to the insurer explaining the need and the proposed length of care.

The above applies to families with good insurance coverage. Those with very low incomes are usually also covered for follow-up care. If the family's income is low enough to qualify for Social Security Income (SSI), this system pays all the medical bills. Medicaid may also pay a percentage.

Middle to low-income families with little or no insurance often have big problems getting follow-up care covered. These families should consult a financial advisor at the hospital to set up a payment plan for care. The financial advisor may know of local foundations that help families in need.

Read your plan carefully to see what is covered. It might cover therapeutic exercise from a physical therapist for a child with osteoporosis, but not a personal trainer to work with the child.

What happens when survivors reach age 18? Where do they get follow-up?

Each clinic has different rules on ages of survivors they will treat. Some clinics see survivors until the age of 18. In this case, the survivor should get a detailed summary of care and the recommended follow-up tests needed on their last visit. They should also get a referral to a local adult primary care provider (internist, family practice doctor) who will provide care. Usually, the pediatric oncology follow-up clinic staff serve as consultants with adult primary care providers.

Some pediatric clinics hire a family physician or an internist interested in childhood cancer survivors to treat adult survivors. At these clinics, the survivor transitions to the adult clinic when they reach age 18. Other pediatric oncology clinics continue to see survivors at any age. The list of clinics available on the above websites specifies the ages of survivors that they treat.