Follow-up Care of Childhood Ependymoma

Executive Summary

Follow-up care for childhood ependymoma refers to the after-treatment protocols conducted by the healthcare team to look after recurrence, manage the side effects, and monitor the patients’ overall health. Both medical and physical examinations are included in the follow-up care of childhood ependymoma. Watching the recurrence of ependymoma is seen in test reports of follow-up care. The symptoms due to the long term effects of radiation therapy are treated. The methods of follow-up treatment are often associated with chemo sessions, radiation therapies, and more. It is essential to have a follow-up care plan for childhood ependymoma. The patient tends to think majorly about ependymoma symptoms and related to them. The doctor will propose checks and testing to check for late effects based on the patient’s ependymoma treatment symptoms. Managing the side effects while receiving treatment is a critical follow-up care approach. Personalizing the follow-up care plan is essential for patients with ependymoma conducted by the medical care team. Effective communication with the doctor regarding the long term effects of all the treatments will be effective in the future.

Follow-up Care for Childhood Ependymoma

Care for children diagnosed with ependymoma doesn’t end with active treatment. The health care team will develop a post-treatment care strategy as per the child’s disease condition, called follow-up care. Every disease survivor should have a proper follow-up care routine. Follow-up care refers to seeing the health care provider post-treatment for regular medical check-ups and screening to evaluate your post-treatment health progress and disease condition. Children who have had disease conditions like ependymoma should require life-long follow-up check-ups.

The follow-up care will include routine physical examinations, various medical tests (blood tests, urine tests) and scans, to monitor the child’s overall health status. These tests and scan results will help the doctor analyze and detect any variation in the patient’s well-being, any other complication, symptoms or signs indicating any disease or side effects due to the treatment. Follow-up care focuses on addressing the child’s physical health issues and prioritizes their mental well-being ​1​. Parents or guardians associated with the child should utilize the opportunity to address any emotional, mental concerns to their doctor or health care team. 

Parents or caretakers can design a survivorship care plan along with their child’s physician. A survivorship care plan will consist of a full, detailed summary of your child’s treatment, along with a follow-up plan designed as per your child’s health condition and requirements. This plan will function as a tracker to monitor your child’s condition post-treatment. It will ensure that the affected child gets regular, competent care to prevent any chance of the disease condition recurring or any side effects of treatment becoming worse. Follow up care should not be missed, especially in the case of disease conditions like ependymoma, as nothing can predict their behaviour, and the possibility of this disorder recurring post successful treatment also cannot be discarded. Doctors can check for recurrence or distant metastasis through these follow-up check-ups and help treat them.

In Follow-up care, the doctor may recommend rehabilitation. Rehabilitation includes various services such as therapies (physical and mental), pain management, educational assistance, career counselling, emotional counselling, family counselling, diet and nutrition planning ​2​. The ultimate goal of rehab is to aid survivors to regain control over their lives and encourage them to be self-sufficient, active and productive as much as possible. Rehabilitative therapies and sessions help cope with, treat, and relieve the symptoms or side effects of successful cancer treatment. Follow-up care and rehabilitation collectively focus on improving the quality and comfort of the life of ependymoma survivors and their families. A rehabilitation medicine specialist can ensure that the child and its family members get the most appropriate and effective rehab services. 

Children and associated family members should be provided with proper care and guidance to cope with mental stress, anxiety, and depression post-treatment of childhood ependymoma (or any disease in general). Today, most cancer care centres have support groups and services that offer survivors and caregivers the support they require. These support services will have various therapies, counselling and other sessions to address the emotional concerns of the survivors.

The primary goal of follow-up care post successful treatment is to check for any possible recurrence ​3​. A doctor who is familiar with your child’s medical history will be able to guide you with personalized information regarding your child’s risk of disease recurrence during follow-up check-ups.

The doctor may ask you different questions to evaluate your child’s health condition. Depending on their age, disease condition’s type, stage, and gravity during the initial diagnosis and treatment, the doctor may prescribe various medical tests (blood/urine/imaging tests) and scans. Generally, for a child who has had treatment for ependymoma, MRI scans can help analyze the tumor growth and its chance of recurrence. Ependymoma is notorious to some extent, as it possesses the ability to recur many years after initial treatment. Hence MRI scans and other follow-up procedures are necessary to monitor the tumor growth and any signs of it coming back in the body. Patients are generally advised to carry out MRI screening for the first 2-3 years post-treatment.

Survivors and their caregivers can get triggered by anxiety and stress while coming for follow-up check-ups and waiting for the test results. They will be constantly worried about cancer recurring again in the body. In such cases, survivors and their family members are encouraged to openly communicate their fears with their doctor, who will help them get the necessary support. 

Another important aspect of follow-up care is managing and relieving the side effects of treatment. Children may experience many long-term and short-term side effects while receiving treatment for ependymoma. Long-term side effects tend to last for a more extended period (even months or years) post-treatment. Late side effects refer to those which may develop years after active treatment of the tumor. These side effects can affect the physical and mental well-being of a survivor. Late effects of ependymoma treatment can develop in any part of the body. It can cause physical troubles such as learning problems, neurological problems- like balance issues, weakness, fatigue, or even paralysis. It can also cause other cancer types called second cancers. Side effects can cause depression, anxiety issues, difficulties in thinking, attention, learning and memorizing. 

The doctor will prescribe examination (tests and scans) procedures to check for late and long side effects based on the treatment strategy your child received. In the case of some patients, the doctor or health care team will recommend a combination of rehab services to monitor ependymoma tumors effectively. The services include occupational therapy, physical therapy for coping with nervous system side effects. It will also include cognitive therapy, speech therapy and hearing assistance.

Some children may also be required to undergo a gastrostomy or tracheostomy post-surgical procedure. In gastrostomy, an opening is created in the stomach surgically, and a feeding tube is inserted, thereby assisting the patient is eating and drinking. Tracheostomy is another surgical procedure that makes an opening in the windpipe to help the patient breathe more comfortably. Some patients who have undergone treatment may experience many hormonal issues.

Parents or guardians should talk with their child’s doctor or health care team regarding their child’s treatment as per their tumor condition and what side effects they should expect, well before the treatment begins. If any side effects are expected to cause troubles, proper treatment and care should be managed and relieved. 

Children who have received treatment for ependymoma are urged to make healthy life choices. Children are encouraged to follow established guidelines like eating a healthy balanced diet, maintaining healthy body weight, undergoing screening tests as and when required, not indulging in unhealthy practices like drinking, smoking etc. They are also encouraged to perform physical activities without straining their bodies but strictly under proper adult supervision. Parents or caregivers can even approach a certified dietician who has experience helping tumor survivors manage their diet and enhance their well-being. Parents should talk with the doctor or healthcare team and design a plan to aid their child keep up a healthy lifestyle.

Parents or guardians and ependymoma survivors should work together with the doctor to design a personalized follow-up check-up and care plan. Caregivers of children suffering from ependymoma should make it a point to address or discuss any fears or concerns regarding their child’s mental and physical health with their health care provider. Also, caregivers and survivors should record their treatments and medical history for future reference.  

Close associates of the tumor survivors can also enquire about who will lead the follow-up care to their doctor. Some children continue to see their oncologists or health care team, whereas others transition back to the supervision of another medical professional or their family doctor. Several factors like the type, grade, gravity of the disease condition, possible side effects, personal preferences etc., shape such decisions. 

Parents or caregivers must also note that, if, in case, a medical professional who was not a part of your child’s treatment led the follow-up care, be sure to share all relevant medical history and survivorship plan with them. This applies in the case of all future health care providers. And it is crucial, as it will help the new doctor plan your child’s care based on their past medical details.


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    Venkatramani R, Dhall G, Patel M, et al. Supratentorial ependymoma in children: To observe or to treat following gross total resection? Pediatr Blood Cancer. Published online March 2, 2011:380-383. doi:10.1002/pbc.23086
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    Rosabal‐Obando M, Osorio DS, Lassaletta A, et al. Follow‐up evaluation of a web‐based pediatric brain tumor board in Latin America. Pediatr Blood Cancer. Published online May 18, 2021. doi:10.1002/pbc.29073
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    Sands SA, Zhou T, O’Neil SH, et al. Long-Term Follow-Up of Children Treated for High-Grade Gliomas: Children’s Oncology Group L991 Final Study Report. JCO. Published online March 20, 2012:943-949. doi:10.1200/jco.2011.35.7533