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Pediatric Supportive Care (PDQ®)
- Psychological Adjustment
- End-of-Life Care
- Changes to This Summary (03/06/2013)
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Note: Information about physical adjustment to treatment, problems with physical and cognitive development, and life after cancer treatment will be added to this summary in the future.
The goal of supportive care is to improve the quality of life for young cancer patients and their families.
Most children with cancer can be cured. However, cancer treatment for young patients can cause unwanted side effects and other problems during and after treatment. Early treatment of cancer symptoms and the side effects of therapy helps patients feel better, stay stronger, and cope with life after cancer. Supportive care improves the patient's physical, psychological, social, and spiritual quality of life.
Supportive care is given to children of all ages, including infants, children, adolescents, and young adults.
Cancer in children is different from cancer in adults.
Cancer in children and young adults is different from cancer that develops later in life. Childhood cancers usually do not act like adult cancers and are not treated the same way:
- TreatmentIn general, treatments for childhood cancer use higher doses of chemotherapy and radiation than is used for adults. These treatments may also be given over a shorter amount of time than in adults. This is because children can receive more intense treatment (higher doses given over a shorter time) than adults can, before serious side effects occur.
- Side effectsSome of the unwanted side effects of cancer treatments cause more harm to children than they do to adults. This is because children's bodies are still growing and developing, so cancer and its treatment are more likely to affect developing organs.Side effects of chemotherapy and radiation therapy may happen right away or weeks or years after treatment. Cancer treatment may also affect a child's growth or cause a second cancer to form. Problems that appear weeks or years after treatment are called late effects. Because of possible late effects, childhood cancer survivors need life-long follow-up. (See the PDQ summary on Late Effects of Treatment for Childhood Cancer for more information).
- Supportive careThe types of supportive care given to children may be different from those used for adults. For example, certain medicines used to control symptoms in adults may not be safe for children.
Children of different ages need different treatment and support.
The treatments and supportive care will be different for different age groups and will change as the child grows and develops. For some cancers, the prognosis (chance of recovery) and risk of late effects depend partly on the age of the child at the time of diagnosis or treatment. See CureSearch for more information about treatment and support for different age groups.
A child's circle of family and friends may be larger than it usually is for adults.
Even with a diagnosis of cancer, the child will still be going to school, spending time with friends and family, and enjoying many activities that were a part of life before cancer. The child's circle of family and friends may be large. In addition to parents, brothers, and sisters, many others may be closely involved in the child's everyday life. This includes grandparents, aunts, uncles, cousins, teachers, schoolmates, and friends. Everyone in a child's circle of family and friends are affected by the child's cancer diagnosis and treatment, and possible side effects of treatment.
Most decisions about care will be made by the child's parents or guardians.
Children under the age of 18 don't have the legal right to make their own decisions about treatment. Their parents or guardians legally make these decisions for them. Decisions about treatment may be difficult because of this. There are ethical concerns about informed consent (the process of giving information about possible treatments and their risks and benefits, before treatment decisions are made). In the treatment of children, parents are informed and decide whether to give permission for the treatment. Whenever possible, it is best that the child be involved and agrees with decisions about treatment.
Most children who have cancer adjust well.
Cancer treatment is stressful on the child and the family. However, studies have shown that most children treated for cancer, and children who are long-term survivors of cancer, have few serious psychological problems.
The early days of treatment, when the child is often in the hospital, are usually the most stressful for the child and the family. The child may be anxious about being away from home and receiving new treatment. This anxiety usually decreases over time. Studies have reported that, in general, children treated for cancer have no differences from other children in self-esteem, hopefulness, depression, anxiety, or loneliness.
Children who have a lot of support from their family are less likely to have problems adjusting.
The type of cancer and the treatments used can affect adjustment.
Some of the factors that may increase the risk of social, emotional, or behavioral problems include:
- Having leukemia, lymphoma, or a cancer or treatment that affects the central nervous system (brain and spinal cord).
- Having a stem cell transplant.
- Having family problems.
- Being younger than school age during treatment.
Depression and Suicide
A small number of children may have problems that lead to depression or suicide.
Some studies have shown that physical and emotional distress related to cancer and its treatment can cause mental health problems in certain childhood cancer survivors. These problems include depression that needs treatment and can lead to suicide. Signs of depression include the following:
- Feeling empty, worthless, unloved, or that life isn't worth living.
- Feeling nervous, restless, or irritable.
- Changes in appetite.
- Low energy.
- Sleep problems.
- Decreased interest in activities.
- Increased crying.
See the PDQ Supportive Care summary for more information about Depression in children.
Certain antidepressant medicines may cause suicidal thoughts or actions in children, teenagers, and young adults.
Drugs called SSRIs (selective serotonin reuptake inhibitors) have been shown to decrease depression in young people. SSRIs usually have few side effects but they may cause suicidal thoughts or actions in young people (children, teenagers, and young adults). The Food and Drug Administration (FDA) has warned that young people up to age 25 who are taking SSRIs should be watched closely for signs that the depression is getting worse, especially suicidal thinking or behavior. Close monitoring is especially important during the first four to eight weeks of treatment. The patient, family, and health care provider should discuss the risks and benefits of using SSRIs to treat depression.
The side effects of SSRIs have not been studied in children, adolescents, or young adults with cancer.
It is important that survivors of childhood cancer have regular mental health check-ups as part of follow-up care.
Follow-up cancer care may be given by the cancer treatment doctor or the main provider, such as the family doctor. It is important that regular mental health check-ups be part of this follow-up care. A patient who shows signs of depression or other mental health problems during follow-up care may be referred to a therapist or other mental health specialist. Many survivors get help from therapists who are experts in helping people who are recovering from cancer.
Post-traumatic Stress Disorder and Symptoms
Post-traumatic stress disorder (PTSD) is an anxiety disorder that occurs after serious physical injury or severe mental or emotional distress.
Being diagnosed with a life-threatening disease and receiving treatment for it is often traumatic. This trauma may cause a group of symptoms called post-traumatic stress disorder (PTSD). PTSD is defined as having certain symptoms following a stressful event that involved death or the threat of death, serious injury, or a threat to oneself or others.
People who have survived very stressful situations, such as military combat or natural disasters, may also have PTSD. PTSD can affect cancer survivors in the following ways:
- Reliving the time they were diagnosed and treated for cancer, in nightmares or flashbacks, and thinking about it all the time.
- Avoiding places, events, and people that remind them of the cancer experience.
- Being constantly overexcited, fearful, irritable, or unable to sleep, or having trouble concentrating.
Because avoiding places and persons connected to the cancer is part of PTSD, survivors with PTSD may not get the medical treatment they need.
Childhood cancer survivors who are diagnosed with PTSD are more likely to have depression and to have difficulty with common aspects of young adulthood, such as doing well in school, taking part in social activities, and reaching career goals.
Children and teens with cancer, as well as parents and siblings, may be at risk for post-traumatic stress disorder.
In children and teens with cancer, symptoms of PTSD may occur during treatment or after treatment has ended. Those who feel very uncertain about their disease and future may be more likely to have PTSD symptoms. Parents and siblings (brothers and sisters) of childhood cancer survivors are also at high risk for PTSD.
It is important that cancer survivors and their families receive information about the possible psychological effects of their cancer experience and about early treatment of symptoms of PTSD.
Follow-up cancer care may be given by the cancer treatment doctor or the main provider, such as the family doctor. It is important that regular mental health check-ups be part of this follow-up care. A patient who shows signs of PTSD or other mental health problems during follow-up care may be referred to a therapist or other mental health specialist. Many survivors get help from therapists who are experts in helping people who are recovering from cancer.
When a child has cancer, all members of the family are affected.
Parents feel great distress when their child is diagnosed with a life-threatening disease. Over time, the level of distress may lessen. Each family is affected in its own way, and different members of the family will react in different ways.
Certain factors may increase the family's level of distress:
- The cancer patient is at a young age when diagnosed.
- The cancer treatments last for a long period of time.
- The child with cancer dies.
The entire family must adjust to changes in normal routine as the parents cope with the child's treatment, look for information, and try to also take care of the brothers and sisters. The parents' attention is focused on the child with cancer.
Brothers and sisters of the cancer patient need help to cope with their feelings of anxiety, loneliness, and fear. Brothers and sisters who are bone marrow (stem cell) donors for the cancer patient may have anxiety. Siblings who are not bone marrow donors may have school-related problems.
Although stress-related symptoms are common in siblings of childhood cancer patients, they sometimes report that their experience has made them more compassionate and that the cancer experience has brought their family closer together.
Social support can help decrease the family's distress.
Parents who are working and who have support from family, friends, and the health care team usually have lower levels of distress and feel more positive about their child's experience. Social support programs, such as support groups and summer camps, help brothers and sisters cope with the illness more easily.
Parents are partners with doctors in decisions about their child's end-of-life care.
Even though new and better treatments have increased the chances of a cure or remission, some types of childhood cancer do not get better. When a child's cancer does not get better or comes back, parents may not be sure about whether to continue treatment and, if so, what kind.
Parents who are caring for a child at the end of life need a lot of support that includes family members and the child's health care team. The health care team can help parents understand how different types of treatment can affect their child's quality of life. Parents have to decide if they want their child to continue to receive treatment even if it is not likely to affect the cancer. They also have to decide if they want their child to take part in decisions about end-of-life care.
Parents have reported that they find the most support from cancer treatment doctors who:
- Give clear information.
- Communicate in a caring and sensitive way.
- Communicate directly with their child as needed.
- Let them know what to expect as their child nears death and help them get ready for it.
There may be services that can help with end-of-life care for children.
Some medical centers that specialize in cancer care for children have services that help with palliative and end-of-life care. These support services may include:
- Pediatric palliative care team.
- Pain service.
- Hospice care.
- Psychological and social support team.
- Bereavement program.
- Complementary and alternative medicine (CAM) services.
Other services that are helpful but may be harder to find include:
- Programs for siblings of children who are receiving end-of-life care.
- Hospice programs that accept children who are still receiving chemotherapy.
- Clinical trials that combine complementary and alternative treatment with standard treatment.
Even when palliative care and end-of-life care support services are not available, cancer treatment doctors may suggest other options to parents. If parents have home health care support, many are able to plan and give their child end-of-life care at home. This can have the following positive effects:
- The child may not need to be admitted to the hospital as often.
- The parents feel that they have more control and are better able to accept their child's death.
- If the child does die in the hospital, he or she is less likely to die in an intensive care unit, which often uses invasive treatments.
There are many important ways to improve end-of-life care for children.
When a child nears the end of life, the whole family needs compassionate medical, spiritual, emotional, and practical support. This includes the following types of help:
- Communication that is caring and sensitive to the needs of the child and the family. Communication should be based on the child's age and stage of development.
- Palliative care that includes ways to manage pain and other symptoms at the end of life. Medicines and non-drug treatments can relieve pain, agitation, itching, nausea, vomiting, and seizures. Platelet transfusions may be given to help prevent bleeding.
- Support for the emotional and spiritual needs of the child and the family that are based on differences among family members and on the family's cultural beliefs.
- Bereavement care which may include helping families create memories with the child, such as photo albums or handprints. It also helps the family to know what to expect at the time of death and in the days, weeks, and months that follow. Bereavement support sessions may be offered after the child's death. See the PDQ summary on Grief, Bereavement, and Coping With Loss for more information.
- Advance care planning to help the family make decisions about:Types of treatment to be used.Whether the family wants the child to die at home.Whether the family wants hospice care.Funeral arrangements.Whether a Do Not Resuscitate (DNR) order will be in place.Whether taking part in decisions would help the child.
- Information and advice from the health care team about medical, ethical, and legal issues.
Good end-of-life care includes treatment and support that is based on the special needs of the child and family and improves their quality of life.
See the PDQ summary on Last Days of Life for more information.
Changes to This Summary (03/06/2013)
Editorial changes were made to this summary.
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PDQ is a comprehensive cancer database available on NCI's Web site.
PDQ is the National Cancer Institute's (NCI's) comprehensive cancer information database. Most of the information contained in PDQ is available online at NCI's Web site. PDQ is provided as a service of the NCI. The NCI is part of the National Institutes of Health, the federal government's focal point for biomedical research.
PDQ contains cancer information summaries.
The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries are available in two versions. The health professional versions provide detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions provide current and accurate cancer information.
Images in the PDQ summaries are used with permission of the author(s), artist, and/or publisher for use within the PDQ summaries only. Permission to use images outside the context of PDQ information must be obtained from the owner(s) and cannot be granted by the National Cancer Institute. Information about using the illustrations in the PDQ summaries, along with many other cancer-related images, are available in Visuals Online, a collection of over 2,000 scientific images.
The PDQ cancer information summaries are developed by cancer experts and reviewed regularly.
Editorial Boards made up of experts in oncology and related specialties are responsible for writing and maintaining the cancer information summaries. The summaries are reviewed regularly and changes are made as new information becomes available. The date on each summary ("Date Last Modified") indicates the time of the most recent change.
PDQ also contains information on clinical trials.
A clinical trial is a study to answer a scientific question, such as whether one method of treating symptoms is better than another. Trials are based on past studies and what has been learned in the laboratory. Each trial answers certain scientific questions in order to find new and better ways to help cancer patients. Some patients have symptoms caused by cancer treatment or by the cancer itself. During supportive care clinical trials, information is collected about how well new ways to treat symptoms of cancer work. The trials also study side effects of treatment and problems that come up during or after treatment. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." Patients who have symptoms related to cancer treatment may want to think about taking part in a clinical trial.
Listings of clinical trials are included in PDQ and are available online at NCI's Web site. Descriptions of the trials are available in health professional and patient versions. Many cancer doctors who take part in clinical trials are also listed in PDQ. For more information, call the Cancer Information Service 1-800-4-CANCER (1-800-422-6237).
This information was last updated on 2013-03-06