AYA survivors of cancer face a number of typical developmental challenges in the context of exposure to a potentially traumatic event.

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A significant proportion of AYA survivors report experiencing symptoms of posttraumatic stress with elevated risk observed among survivors who are female,22 those who develop medical late effects,17,31,35 those who achieve a lower socioeconomic status,16,35 and those who experience greater family discord.36,54

Importantly, our ability to report reliable prevalence estimates of PTSS and elucidate risk factors is hindered by several methodological factors including:

  1. the definition and measurement of PTSD/PTSS
  2. the assumption of cancer as a traumatic event
  3. the application of diagnostic symptoms to AYA cancer survivors
Table 4 – Risk factors associated with PTSD/PTSS in AYA cancer survivors
Static Dynamic Relational
Female sex Perceived severity of cancer diagnosis/life threat Exposure to PTSD in the home/having a parent with PTSD
Diagnosis during adolescence
Medical late effects
Perceived severity of treatment intensity
Perceived severity of late effects
Treatment intensity Delayed progress toward developmental goals
Lower educational level
Increased psychological distress
Having a history of stressful events Reduced quality of life
Having experienced a relapse or recurrence Poor family functioning
Trait and general anxiety

Issues of application, definition, and measurement

Discrepancies in the prevalence of reported posttraumatic stress responses (namely, PTSD and PTSS) in young cancer survivors may be, in part, attributed to challenges associated with their definition and assessment. Beyond measurement difficulties, the appropriateness of applying the posttraumatic stress model to child and AYA posttraumatic stress reactions has been questioned.56

Specifically, the nature of the cancer experience – ongoing, ever evolving, and lacking clear, definitive termination – suggests that the stress reactions of survivors are more appropriately characterized as traumatic and normative responses, rather than posttraumatic, pathological ones.57

However, if it were the case that posttraumatic stress reactions were overpathologized, the occurrence of PTSD among cancer survivors would be far more common than is currently indicated.58 That only a fraction of survivors report PTSS suggests that these posttraumatic stress reactions reflect an underlying predisposition to pathological responses.

Contextualizing these responses within the posttraumatic stress model and PTSD taxonomy provides survivors and mental health care providers with a framework for recognizing and treating PTSS and PTSD.

The epidemiology of posttraumatic stress in the AYA survivor population is subject to the outcome definition used.28 Unfortunately, there is a considerable degree of inconsistency in this regard, with studies using a variety of operational definitions for PTSD, thus leading to potential misclassification of the outcome and potential upward or downward biased estimates.

For example, some studies may use any combination of symptom quantity, frequency, or severity in measuring posttraumatic stress, while others may employ the more formal DSM-IV PTSD diagnostic criteria, either with or without functional impairment.

In a study examining the prevalence of PTSD in childhood cancer survivors and their siblings (aged $18 years), Stuber and colleagues28 found that prevalence varied depending on how PTSD was operationalized.

The prevalence, predictors, and functional impact of posttraumatic stress are likely to be affected by the varying definitions of PTSD, which limits direct comparison across studies.

Methodological concerns are not limited to measurement inconsistency. PTSS expression, diagnostic criteria, and assessment instruments have not been well validated or extensively studied among child and adolescent populations, despite developmental stage-specific diagnostic criteria.

The questionable validity of PTSD instruments for use with adolescents is of concern, as most of these measures have been adapted from adult versions and validated on adult populations.59 Further, few assessment instruments have been developed within the cancer survivorship framework or validated within a survivorship population.57,60

The A1 problem: cancer as trauma

The term “traumatic stressor” has undergone several revisions with regard to its conceptual and operational definition in the DSM.

As previously stated, the definition most widely used in recent publications and practice comes from the DSM-IV, which requires that an individual with PTSD should have been exposed to a traumatic event in which they “experienced, witnessed, or were confronted with an event(s) that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others” and should demonstrate a response involving “intense fear, helplessness, or horror”.7

In earlier versions of the DSM, a cancer diagnosis would not be recognized as a qualifying event; the inclusion of being diagnosed with a life-threatening illness as a qualifying stressful event came after trials for DSM-IV documented higher rates of PTSD in adult cancer survivors than adult controls.61

This interpretation was narrowed for DSM-5, which states that “a life-threatening illness or debilitating medical condition is not necessarily considered a traumatic event. Medical incidents that qualify as traumatic events involve sudden, catastrophic events”.15

The nature of a life-threatening illness such as cancer may not be conducive to identifying a solitary precipitating traumatic event, as the so-called cancer experience encompasses multiple ongoing stressors, many of which occur simultaneously or in close succession.

At diagnosis, individuals are confronted with the reality that they will likely die without treatment and they may die with treatment – an event that essentially threatens one’s life. Cancer therapy itself imposes abrupt life changes and often involves frequent invasive and painful medical procedures and hospitalization – events that threaten one’s physical integrity.

Approximately two-thirds of all pediatric cancer survivors have at least one complication of their cancer treatment, with one-third of survivors having serious or life-threatening complications.62 Late effects manifesting months or years after treatment place survivors at an increased risk of cognitive impairment, second malignant neoplasms, cardiomyopathy, infertility, and a host of other medical and psychosocial sequelae that may also threaten physical integrity.

Diagnosis, treatment, and sequelae are usually mutually exclusive events requiring the chronic processing of (traumatic) stress, making it difficult to identify a discrete or episodic stressor.

One differential diagnosis suggested by the DSM-IV and DSM-5, adjustment disorder, does account for multiple/continuous stressors such as those associated with chronic illness, but it fails to meet the general profile of survivors presenting with PTSS with regard to the appropriateness, severity, and duration of such distress symptoms.

For example, it would be difficult to determine whether marked distress by AYA cancer survivors is out of proportion to the severity or intensity of the stressful event. Additionally, given the longitudinal nature of cancer treatment and sequelae, symptoms are not likely to remit 6 months after the stressor.

Another poor fit for this population, acute stress disorder, requires symptoms to cease just 1 month following the stressor. The number of continuous, illness-related stressors associated with survivor PTSS makes cancer-induced PTSS/PTSD a unique pathology perhaps worthy of its own trauma disorder specification.