Cancer is the leading cause of disease-related death among children in the United States, with over 15,000 children ,19 years of age diagnosed with cancer each year.1

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Climbing incidence combined with increasing 5-year survival rates, presently at roughly 80%,2,3 have contributed to a growing number of pediatric cancer survivors.

Currently, it is estimated that there are approximately 400,0004 pediatric cancer survivors living in the United States with 70% of these survivors aged 20 years or older.1 

Approximately 70,000 adolescents and young adults (AYA) 15–39 years of age are diagnosed with cancer in a single year; roughly six times the number of cases diagnosed in children 14 years of age.5 Less than half of the 24 most common AYA cancer diagnoses have a 5-year survival rate exceeding 80%.6

Compared with survival trends among pediatric and older cancer populations, there has been limited progress in improving the survival rates of AYA cancers in recent decades. Research investigating the psychosocial sequelae of pediatric and AYA cancer suggests survivors’ psychological adjustment may be adversely impacted. 

Given that trauma and chronic stress, such as life-threatening illnesses and their sequelae, have been found to influence psychological adjustment, recent attention has focused on the occurrence and development of traumatic stress responses in young cancer survivors.

With the broadening of diagnostic criteria for posttraumatic stress disorder (PTSD) in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) to include “being diagnosed with a life-threatening illness”,7 studies examining the prevalence of PTSD and posttraumatic stress symptoms (PTSS) among cancer patients and survivors have emerged.

The objectives of this review include the following:

  1. to report prevalence estimates of PTSD and PTSS in AYA cancer survivors
  2. to review the established risk factors believed to precipitate PTSD and PTSS in AYA cancer survivors
  3. to discuss the methodological challenges associated with ascertaining prevalence estimates of PTSD and PTSS in AYA cancer survivors
  4. to comment on the state of evidence-based treatment and intervention in the affected population

The AYA survivor population

AYA cancer survivors make up a heterogeneous population comprised of subgroups that vary with respect to age at diagnosis, treatment, and developmental features.

There are two general cohorts included in the definition of AYA survivors: those diagnosed with cancer as children or adolescents (ie, treated on the pediatric side) who have survived into adolescence/young adulthood; and those diagnosed as AYA.

The National Cancer Institute defines AYA cancer patients as those diagnosed with cancer between the ages of 15 years and 39 years.8 Because adolescence and young adulthood are life stages defined by unique developmental challenges and vulnerabilities, AYA survivors may have different cancer and survivorship experiences depending on age at diagnosis.

For example, treatment may have occurred at pediatric or adult medical centers, long-term follow-up care may or may not be available, and psychological development may have been disrupted at different phases of development. Like their healthy peers, AYA survivors must develop a sense of self in order to continue along a healthy developmental trajectory and master future developmental milestones.

An interruptive adverse life event such as a cancer diagnosis is likely to demand the attention and focus of resources that might have been directed elsewhere, including developing a positive body image and sexual identity and establishing autonomy from parents.

Disrupted developmental milestones will vary depending on age, with adolescent milestones characterized by the transition from dependence to autonomy, and young adult milestones typically related to establishing financial independence, forming intimate relationships, and family planning.

Unlike survivors diagnosed as young children, survivors diagnosed as AYAs have the cognitive capacity to understand the implications of a life-threatening illness and are forced to confront their own mortality during a life period typically marked by feelings of invincibility.9

Unresolved conflicts related to personal identity, life meaning, or achievement may resurface after the completion of treatment and manifest in the form of persistent psychological distress or traumatic stress responses.

Syndrome versus symptoms: PTSD and PTSS

Currently, the most widely published and clinically utilized definition of PTSD comes from the DSM-IV, which classifies PTSD as an anxiety disorder and requires that the disorder follow exposure to a traumatic event (through witnessing or experiencing) which threatened the life or bodily integrity of the self or other.

In the DSM-IV, PTSD is defined by three symptom clusters (re-experiencing, avoidance, and hyperarousal) which, when combined, produce clinical levels of distress and/or impairment for at least 1 month following the traumatic event (Table 1).

Using the DSM-IV criteria, the overall lifetime prevalence of PTSD is approximately 8% among adults in the United States and the past year (12-month) prevalence is estimated at 3.5%, with higher rates consistently found among women.7 Reported PTSD rates among American adolescents vary.

Data from the National Survey of Adolescents, which used a household probability sample of 4,023 adolescents aged 12–17 years, reported the 6-month prevalence as 3.7% for boys and 6.3% for girls.10

Data from the National Comorbidity Survey Replication–Adolescent Supplement, which used a nationally representative sample of more than 10,000 adolescents between the ages of 13 years and 18 years, indicated that the lifetime prevalence rate for PTSD is 5%, with higher rates among females.11

Significantly higher PTSD prevalence rates have been reported among certain at-risk populations, such as service members deployed in Operation Enduring Freedom and in Operation Iraqi Freedom (13.8%),12 survivors of human-made/technological disasters (30%–60%),13 survivors of natural disasters (5%–60%),13 and cancer patients and survivors (3%–35%).14

The provision of a developmental framework for considering the diagnosis of PTSD did not formally emerge until the fifth edition of the DSM (DSM-5).15 In DSM-5, the inclusion of a second set of diagnostic criteria for children 6 years of age and younger, as well as text notes for symptom expression in children older than 6 years, has helped clarify the diagnosis of PTSD in children (Table 3).

New DSM-5 text revisions regarding the development and course of the disorder throughout childhood, adolescence, and young adulthood provide clinically useful age guidelines.

For example, symptom expression shifts across developmental stages, with adolescents likely to exhibit feelings of social undesirability and/or irritable, aggressive, or reckless behavior, and young adults likely to present with hyperarousal, avoidance, and/ or negative cognitions and mood.15 It is possible for an individual to experience one or more of the symptoms associated with PTSD without having the full disorder.