Using a ten-point scale, PCPs mean comfort level in caring for survivors of pediatric cancer was 5.78 (SD = 2.37). PCPs identified the following barriers: limited knowledge of late effects (64%; n=114), lack of communication with oncologist (47%; n=83), and comfort level (38%; n=67).
What happens to childhood cancer survivors?
Advances in cancer treatment mean that today 85% of children diagnosed with cancer are alive at least five years after diagnosis. Many ultimately will be considered cured. As a consequence, interest is growing in the long-term health of these survivors.
What types of additional problems and issues might Cancer Survivors Face?
Cancer survivors may face numerous challenges during and after treatment: Limited access to cancer specialists and promising new treatments. Denial of health insurance and life insurance coverage. Difficulty finding jobs.
How does cancer affect childhood?
Compared to children who had not had cancer, children treated for cancer before age 4 progressed more slowly in vocabulary, cognitive functions such as attention and memory, and motor skills. However, having cancer did not appear to affect children's social and emotional development.
What is the treatment for childhood cancer?
The types of treatment that a child with cancer receives will depend on the type of cancer and how advanced it is. Common treatments include: surgery, chemotherapy, radiation therapy, immunotherapy, and stem cell transplant. Learn about these and other therapies in our Types of Treatment section.
What are the challenges cancer patients face?
Upon hearing a diagnosis of cancer, the patient is faced with a multitude of issues. In addition to the medical and logistic details described previously, major concerns include fear of death, disfigurement, pain, disability, infertility, dependency, abandonment, altered relationships, and financial hardship.
How has cancer impacted your life?
A cancer diagnosis can affect the emotional health of patients, families, and caregivers. Common feelings during this life-changing experience include anxiety, distress, and depression. Roles at home, school, and work can be affected. It's important to recognize these changes and get help when needed.
How long do childhood cancer survivors live?
Survivors of childhood cancer are living longer. Childhood cancer survivorship has improved dramatically over the past 50 years as new therapies have been discovered. Today, more than 80 percent of children and adolescents diagnosed with cancer can expect to live five years or more.
How does cancer affect social development?
You might feel like others can't truly understand. Friends may have retreated. You might find emotional support in counseling, a support group or faith community. Relationships: Cancer can strain relationships with friends, family and co-workers.
What are late effects of cancer treatment?
What cancer treatments cause late effects?TreatmentLate effectsChemotherapyDental problems Early menopause Hearing loss Heart problems Increased risk of other cancers Infertility Loss of taste Lung disease Nerve damage Osteoporosis Reduced lung capacity5 more rows
What is the rarest childhood cancer?
Rare tumours which only occur in children include: Pancreatoblastoma. Malignant rhabdoid tumours. Melanotic neuroectodermal tumours of infancy.
Can childhood cancer be cured?
Access to effective diagnosis, essential medicines, pathology, blood products, radiation therapy, technology and psychosocial and supportive care are variable and inequitable around the world. However, cure is possible for more than 80% of children with cancer when childhood cancer services are accessible.
Can babies be born with cancer?
Acquired mutations are beyond human control. So, it's not possible to prevent babies from being born with cancer. Fortunately, there are some things expecting parents can do to salvage the situation.
I. Background and Objectives for the Technical Brief
Childhood cancer survivors (CCS) face many challenges regarding long-term health outcomes, many of which are poorly understood or unknown. Despite gains in survival, CCS are at risk for adverse physical, psychosocial, and behavioral outcomes.
II. Guiding Questions
The brief will be facilitated by guiding questions (GQs), documenting research and Key Informant input.
III. Methods
The methods for this technical brief will follow the Methods Guide for Evidence-based Practice Center (EPC) Program. The guiding questions will help formulate the overarching methods and facilitate the search strategy for this technical brief, which are outlined in this protocol.
IV. References
National Research Council. Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC: The National Academies Press; 2003.
VII. Key Informants
Within the Technical Brief process, Key Informants serve as a resource to offer insight into the clinical context of the technology/intervention, how it works, how it is currently used or might be used, and which features may be important from a patient of policy standpoint.
VIII. Peer Reviewers
Peer reviewers are invited to provide written comments on the draft report based on their clinical, content, or methodologic expertise. Peer review comments on the draft report are considered by the EPC in preparation of the final report. Peer reviewers do not participate in writing or editing of the final report or other products.
IX. EPC Team Disclosures
EPC core team members must disclose any financial conflicts of interest greater than $1,000 and any other relevant business or professional conflicts of interest. Related financial conflicts of interest that cumulatively total greater than $1,000 will usually disqualify EPC core team investigators.
Why is there no assessment of childhood cancer?
Reasons for lack of assessment include lack of data , heterogeneity of the childhood cancer survivor population, and lack of funding. The review found that few studies assess how to address barriers at the provider level, and AHRQ did not find any studies addressing barriers at the healthcare system or payer levels.
Is pediatric cancer rare?
Pediatric cancer is a rare diagnosis, and effectively and efficiently studying an understudied sub-group needs support to encourage and sustain research in disparities and barriers to pediatric survivorship care.”. Children’s Cancer Cause has long advocated for systemic policy reforms that include improved education and coverage for pediatric ...
What is follow up care for cancer?
Places that specialize in follow-up care for children who have been treated for cancer are called follow-up care clinics or survivorship clinics. At these clinics, your child will see specialists (in cardiology, endocrinology, fertility, nutrition, psychology, and/or pulmonology, for example) who will monitor your child’s health. These clinics are usually found within hospitals.
What are the physical effects of cancer?
Physical late effects involve changes to organs, tissues, and/or body functions. They may affect your child’s growth and development. Some children who have been treated for cancer have many physical late effects, whereas others have relatively few.
How often do survivors need to return to care?
Survivorship care plans are based on the type of cancer and treatment your child received. For example, some children may need to return for visits each month for the first year after they have completed treatment. Others may not need to return as often. Here is the type of information that’s included in follow-up care plans for children who have ...
What are the treatment related factors?
Treatment-related factors such as the type and dose of treatment (s) or the type of surgery. Patient-related factors such as your child’s gender, age at diagnosis, length of time since diagnosis/treatment, personal and family health history, and health habits.
What are the late effects of a child's behavior?
Late effects may be physical, emotional, or cognitive. Knowing what symptoms to be aware of and when they may occur can help you plan for the needs of your child. Not knowing what to expect can cause anxiety for some parents. However, for other parents, knowing about late effects that may or may not happen to their child in the future can be overwhelming. Many parents find it helpful to ask their child’s doctor what to focus on at each step of their child’s recovery.
Is cancer a new challenge for a child?
While the completion of your child’s cancer treatment is something to celebrate, it may also bring new challenges. You may worry that the cancer will return. Your child may struggle to get used to new routines. Some families enter this new phase feeling stronger, whereas others are more fragile.
What happens at my child's follow-up visits after cancer treatment?
After the end of cancer treatment, follow-up visits typically include testing to make sure the cancer has not returned. In addition, persistent side effects from cancer treatment are monitored and supportive care given.
What is a cancer treatment summary and survivorship care plan?
A treatment summary is a written, short story about the treatment a child received for cancer. It includes:
Will my child have any lingering side effects from their cancer treatments?
During the first year after completing cancer treatment, many side effects or problems that happened during treatment will go away or improve. A side effect that does not improve is called a long-term side effect. Some long-term side effects may take months or years to go away.
What can I do to help my child?
To avoid being overwhelmed by possible long-term or late effects, ask your child's doctor what to expect during your child's recovery from cancer treatment.
What is a childhood cancer survivorship clinic?
Two years after cancer treatment has ended, your child may be referred to a special childhood cancer survivorship clinic to be checked for any possible long-term and late effects from the treatment.
About Dr. Hogan
Mary-Jane Staba Hogan, MD, MPH, FAAP, is an Associate Clinical Professor at Yale School of Medicine, Pediatric Hematology Oncology section.
About Dr. Hudson
Melissa M. Hudson, MD, FAAP is currently a Member and Director of the Cancer Survivorship Division in the Department of Oncology at St. Jude Children’s Research Hospital. Dr.
I. Background and Objectives For The Technical Brief
- Childhood cancer survivors (CCS) face many challenges regarding long-term health outcomes, many of which are poorly understood or unknown. Despite gains in survival, CCS are at risk for adverse physical, psychosocial, and behavioral outcomes. These late effects could range in severity and complexity, and commonly include cardiovascular disease and ...
II. Guiding Questions
- The brief will be facilitated by guiding questions (GQs), documenting research and Key Informant input. GQ1. What are the disparities in survivorship care for pediatric cancer survivors? GQ2. What are the barriers to survivorship care for pediatric cancer survivors who experience disparities? GQ3. What are proposed strategies for addressing those barriers? GQ4. What published and unp…
III. Methods
- The methods for this technical brief will follow the Methods Guide for Evidence-based Practice Center (EPC) Program. The guiding questions will help formulate the overarching methods and facilitate the search strategy for this technical brief, which are outlined in this protocol. This technical brief and answers to the guiding questions will be informed by interviews with key info…
IV. References
- National Research Council. Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC: The National Academies Press; 2003.
- Kirchhoff A, Leisenring W, Krull K, et al. Unemployment among adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Medical Care. 2010;48(11):1015-25.
- National Research Council. Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC: The National Academies Press; 2003.
- Kirchhoff A, Leisenring W, Krull K, et al. Unemployment among adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Medical Care. 2010;48(11):1015-25.
- Gurney JG, Krull KR, Kadan-Lottick NS, et al. Social outcomes in the Childhood Cancer Survivor Study cohort. Journal of Clinical Oncology. 2009;27(14):2390-5.
- Robison LL, Hudson MM. Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nature Reviews Cancer. 2014 2014/01/01;14(1):61-70. doi: 10.1038/nrc3634.
VII. Key Informants
- Within the Technical Brief process, Key Informants serve as a resource to offer insight into the clinical context of the technology/intervention, how it works, how it is currently used or might be used, and which features may be important from a patient of policy standpoint. They may include clinical experts, patients, manufacturers, researchers, payers, or other perspectives, depending o…
VIII. Peer Reviewers
- Peer reviewers are invited to provide written comments on the draft report based on their clinical, content, or methodologic expertise. Peer review comments on the draft report are considered by the EPC in preparation of the final report. Peer reviewers do not participate in writing or editing of the final report or other products. The synthesis of the scientific literature presented in the final r…
IX. EPC Team Disclosures
- EPC core team members must disclose any financial conflicts of interest greater than $1,000 and any other relevant business or professional conflicts of interest. Related financial conflicts of interest that cumulatively total greater than $1,000 will usually disqualify EPC core team investigators.
X. Role of The Funder
- This project was funded under Contract No. 75Q80120D00009 from the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services through an interagency agreement with the National Cancer Institute. The AHRQ Task Order Officer reviewed contract deliverables for adherence to contract requirements and quality. The authors of this report are r…
Appendix 1. Draft Search Strategy
- PubMed
Results on 5 Jun 2020: 4,077 citations (“Neoplasms”[Mesh] OR “Medical Oncology”[Mesh] OR “Oncology Service, Hospital”[Mesh] OR “Oncology Nursing”[Mesh] OR “Cancer Care Facilities”[Mesh] OR “National Cancer Institute (U.S.)”[Mesh] OR “American Cancer Society”[Mes… - ClinicalTrials.gov
(5 June 2020): 409 results AREA[ConditionSearch] Cancer AND (neonate OR neonatal OR newborn OR newborns OR infant OR baby OR babies OR nursery OR nurseries OR toddler OR toddlers OR preschool OR pre school OR child OR children OR childhood OR kid OR kids OR juvenile OR juveni…