FACTS
The Importance of Psychosocial Support
Childhood Cancer Is a Family Diagnosis
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Patient Mental Health
As a result of treatment 59% of children have a diagnosable mental health issue
- DeMaso & Shaw, 2010
Initial diagnosis, treatment, post-treatment, remission, recurrence, end-of-life care, & survivorship creates crisis
- Holland et al., 1998
15% of children are diagnosed with anxiety
10% of children are diagnosed with depression
15% of children are diagnosed with Post Traumatic Stress Disorder (PTSD)
- DeMaso & Shaw, 2010
Childhood cancer survivors reported higher rates of pain, fatigue and sleep difficulties compared with siblings and peers, all of which are associated with poorer quality of life
- Children's Oncology Group Long Term Follow-Up Guidelines, 2013
Grief & Depression
Chronic grief has been associated with many psychological (e.g., depression, anxiety) and somatic symptoms (e.g., loss of appetite, sleep disturbances, fatigue), including increased mortality risk
- Alam et al., 2012
Depression and other psychosocial concerns can affect adherence to treatment regimens by impairing cognition, weakening motivation, and decreasing coping abilities
- Institute of Medicine, 2008
60% to more than 90% develop one or more chronic health conditions
and
20% to 80% experience severe or life-threatening complications during adulthood
- NCI Childhood Cancer Survivor Study
Impact on Family
Parents show distress and marital conflict within the year after diagnosis
- Grootenhuis & Last, 1997; Vrijmoet-Wiersma et al., 2008
Changes in routines disrupt day-to-day functioning of siblings. Siblings of children with cancer are at risk for emotional and behavioral difficulties, such as anxiety, depression, and PTSD
- Alderfer et al., 2010
Around 1/4 to 1/3 of children and families need more intensive psychosocial support and interventions
- Abrams et al., 2007; Kazak et al., 2012
When a child is diagnosed with cancer, parents are faced with a multitude of pervasive stressors such as the burden of adhering to a complicated treatment regiment
- Bryant, 2003; Pai et al., 2007
Supportive Care
The need for long-term follow-up for childhood cancer survivors is supported by the American Society of Pediatric Hematology/Oncology Nurses (APHON), the International Society of Pediatric Oncology (IPOS), the American Academy of Pediatrics (AAP), the Children’s Oncology Group (COG), and the Institute of Medicine
- National Cancer Institute Website 2015
Psychosocial care can be defined as services and interventions that enable patients, their families, and health care providers to optimize biomedical health care and to manage the psychological, behavioral, and social aspects of illness and its consequences to promote better health
- Institute of Medicine, 2008
Parents may continue to grieve long after the death of their child
- Kreichbergs, Valdimarsdottir, Onelov, Henter, & Steineck, 2004
Psychosocial Care
The provision of psychosocial care has been shown to yield better management of common disease-related symptoms and adverse effects of treatment such as pain and fatigue
- Jaaniste et al. 2007; Jacobsen et al. 2012; Kazak, 2005
For children and families, treating the pain, symptoms, and stress of cancer enhances quality of life and is as important as treating the disease
- IOM 2015 Comprehensive Care for Children with Cancer and Their Families
Childhood cancer threatens every aspect of the family's life and the possibility of a future, which is why optimal cancer treatment must include psychosocial care services
- Institute of Medicine, 2008
Childhood cancer survivors have a 34 per cent higher rate of medical visits for a mental health complaint compared to the general population.
- American Cancer Society, 2018
Cancer Journal 22 Feb 2018
Trauma
Post traumatic stress symptoms (intrusive thoughts, physiological arousal, and avoidance) are common in parents whose children are currently undergoing treatment for childhood cancer
- Kazak et al., 2005
Studies have proven the efficacy of including parents as coaches and co-therapists and its effect on reducing child pain, anxiety, and distress
- Barrera, 2000; Broome, Rehwaldt & Fogg, 1998; Holm et al, 2003
Symptoms of post traumatic stress disorder are well documented for parents whose children have completed cancer treatment
- Kazak et al., 2004
The whole family is affected and forever changed
- Alderfer & Kazak, 2006; Varni, Katz, Colegrove, & Dolgin, 1996; Wallander, Varni, Babani, Banis, &Wilcox, 1992
Other Childhood Cancer Facts
Although cancer in children is rare, it is the leading cause of death by disease past infancy among children in the United States
- NCI child-adolescent-cancers-fact-sheet
www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet
In 2014, it is estimated that 15,780 children and adolescents ages 0 to 19 years will be diagnosed with cancer and 1,960 will die of the disease in the United States
- Ward, E., DeSantis, C., Robbins, A., Kohler, B., & Jemal, A. (2014). Childhood and adolescent cancer statistics. CA: A Cancer Journal for Clinicians, 64 (2), 83-103.
Childhood cancers generally differ in type and biological behavior from cancers diagnosed in adults. Moreover, most childhood cancers lack mutations in genes that can be targeted by Food and Drug Administration (FDA)-approved agents or agents in development for adult cancers
- NCI child-adolescent-cancers-fact-sheet
www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet
Although the overall incidence rate of cancer in children has increased 0.6% annually over the past 35 years, mortality rates for some types of childhood cancer have declined by more than 50 percent
- NCI child-adolescent-cancers-fact-sheet
www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet
The causes of most childhood cancers are unknown, and for the most part, these cancers cannot be prevented
- NCI child-adolescent-cancers-fact-sheet
www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet
Did You Know....
Survival rates remain very low for some cancer types, for some age groups, and for some cancers within a site. For example, median survival for children with diffuse intrinsic pontine glioma (a type of brain tumor) is less than 1 year from diagnosis
- Warren, K.E. (2012). Diffuse intrinsic pontine glioma: poised for progress. Frontiers in Oncology, 2, 205.
As of January 1, 2010, there were approximately 380,000 survivors of childhood and adolescent cancer (diagnosed at ages 0 to 19 years) alive in the United States
- Ward, E., DeSantis, C., Robbins, A., Kohler, B., & Jemal, A, (2014). Childhood and adolescent cancer statistics. CA: A Cancer Journal for Clinicians, 64 (2):83-103.
Indeed, long-term follow-up analysis of a cohort of survivors of childhood cancer treated between 1970 and 1986 has shown that cancer survivors remain at risk of complications and premature death as they age, with more than half of survivors having experienced a severe or disabling complication or even death by the time they reach age 50 years
- Armstrong, G.T., Kawashima, T., Leisenring, W., et al. (2014). Aging and risk of severe, disabling, life-threatening, and fatal events in the Childhood Cancer Survivor Study. Journal of Clinical Oncology, 32 (12):1218-1227.
In 2014, it was estimated that nearly 16,000 new cases of cancer would be diagnosed among children 19 years of age and younger in the United States and that about 2,000 would die from the disease
- NCI child-adolescent-cancers-fact-sheet
www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet