A systematic and conceptual review of posttraumatic stress in childhood cancer survivors and their parents

https://doi.org/10.1016/j.cpr.2005.10.002Get rights and content

Abstract

Recent years have witnessed a rapid acceleration in the recognition and documentation of posttraumatic stress disorder (PTSD) and posttraumatic stress symptomatology (PTSS) in childhood cancer survivors and their parents. However, applicability of PTSD both diagnostically and conceptually to cancer-related traumatic responses remains poorly articulated within the current literature. Following an outline of childhood cancer and PTSD, this paper critically examines the applicability of such a diagnosis to this clinical population. It then systematically reviews the current evidence base (24 studies) on PTSD and PTSS in childhood cancer survivors and their parents. Prevalence of PTSD and PTSS, as well as associated predictors, in this clinical population varies widely. Findings are considered in the light of a number of contemporary theories of PTSD. Limitations within current conceptualizations of PTSD are highlighted with respect to the nature of cancer as a traumatic event and the specific features of traumatic stress manifestations in childhood cancer survivors and their parents. Finally, a number of pertinent research areas are elucidated which are argued to warrant further investigation.

Introduction

No longer is childhood cancer considered a fatal illness. Advances in treatment technologies have ensured ever-increasing periods of disease-free survival (Brown et al., 2003, Moore, 2005). However, an equally rapid growth of research suggests that the deleterious effects of cancer and subsequent “cure” extend beyond physical sequelae. Childhood cancer survivors have repeatedly been found to be at increased risk of developing internalizing and externalizing difficulties as well as social problems (Fuemmeler, Elkin, & Mullins, 2002). In recent years a growing body of literature has highlighted presence of trauma-related symptomatology, such as avoidant behaviors, intrusive thoughts and heightened arousability in cancer survivors (see Kangas et al., 2002, Smith et al., 1999 for reviews). Furthermore, the parents of these children have been found to report comparatively higher rates of trauma-related symptomatology (Goldenberg libov et al., 2002, Manne et al., 2000, Manne et al., 2002, Pelcovitz et al., 1996). The profile and severity of these symptoms are comparable to those exhibited by individuals diagnosed with posttraumatic stress disorder (PTSD) (Smith et al., 1999).

Accordingly, the Diagnostic Statistical Manual of Mental Disorders, 4th edition (DSM-IV; American Psychological Association [APA], 1994) modified and broadened its taxonomy of PTSD. This resulted in the inclusion of both the traumatic event itself and the experience of the person involved in the event. Specifically, being ‘diagnosed with a life-threatening illness’ or ‘learning that one's child’ (APA, 1994, p. 426) has such an illness became a qualifying stressful event. Henceforth, increasing attention has focused on the applicability and nature of cancer specific factors in the development and maintenance of both PTSD and PTSS. Correspondingly, growing recognition and documentation of PTSD in cancer patients by psycho-oncology researchers and clinicians has ensued (Kangas et al., 2002). Furthermore, increasing attention has focused upon assessing posttraumatic stress symptoms (PTSS), which provides a continuous measure of posttraumatic stress reactions and risk of PTSD diagnosis.

As an extensive and ever-expanding body of literature exists in relation to PTSD as well as the neurocognitive and psychosocial sequelae of cancer, this review aims to restrict its examination to the documentation of PTSD and PTSS in childhood cancer survivors1 and their parents. Specifically, the following issues will be reviewed: (i) the prevalence and nature of childhood cancer as well as the associated physical and psychosocial sequelae; (ii) the prevalence and diagnostic features of PTSD in the general population including associated risk factors; (iii) the applicability of PTSD diagnosis to childhood cancer; (iv) the current empirical research base on PTSD and PTSS in childhood cancer survivors and their parents; and (v) the extent to which the experience of childhood cancer can be conceptualized within current theories of PTSD. Finally, several recommendations for future research studies are delineated.

Section snippets

Prevalence of childhood cancer

In the UK, approximately 1400 cases of cancer were diagnosed in children (0–14 years) and 1600 in adolescents and young adults (15–24) in 2001 (Office for National Statistics, Cancer Statistics registrations, 2004). In the US, the American Cancer Society estimated that 9100 new cases of children cancer (0–14 years) were diagnosed in 2002 (Cancer Facts & Figures, 2002). The risk of an individual child in the UK being diagnosed with cancer before the age of 15 is approximately 1 in 500, with a

Prevalence of PTSD in the general population

Estimates of lifetime prevalence of PTSD in the general adult population have been reported to range from 1% to 14% (APA, 1994). The Epidemiologic Catchment Area (ECA) studies revealed lifetime prevalence of PTSD to be 1% in the general adult US population (Helzer, Robins, & McEvoy, 1987). Davidson, Hughes, Blazer, and George, (1991) found a lifetime prevalence of 1.3% in a large adult community sample. The National Comorbidity Survey reported a lifetime prevalence of 7.8% (Kessler, Sonnega,

Application of PTSD and PTSS to childhood cancer

Recognition and utilization of the concepts of PTSD and PTSS in childhood cancer survivors and their parents clearly bestows a number of advantages. Firstly, children and parents who exhibit such symptomatic profiles may be able to understand these responses as recognizable and treatable reactions to traumatic experiences. Use of diagnostic taxonomies such as PTSD also enables rapid and succinct communication of potentially very complex problems. Furthermore, they assist clinicians in the

Systematic review of cancer-related PTSD and PTSS literature

Recently, two excellent reviews of PTSD and PTSS in adults directly affected by cancer (Kangas et al., 2002) and general medical illnesses (Tedstone & Tarrier, 2003) have been published. Kangas et al. (2002) highlighted a number of issues pertinent to the assessment and treatment of cancer-related PTSD as well as advocating the need for a stronger empirical base to guide clinical management of PTSD in cancer patients. Tedstone and Tarrier (2003) documented that, irrespective of medical illness,

Theories of PTSD applied to childhood cancer survivors and their parents

A large number of theories have attempted to elaborate the mechanisms thought to underlie the etiology and maintenance of PTSD. While each has offered important contributions to the field of posttraumatic stress this review has selected four theories through which to assimilate the current findings of cancer-related PTSD and PTSS in childhood cancer survivors and their parents: (i) stress response model; (ii) fear network model of emotional processing; (iii) dual processing theory; (iv)

Directions for future research

What is clear from the current literature on PTSD and PTSS in childhood cancer survivors and their parents is that findings are inconsistent. This prevents establishment of a coherent body of knowledge from which to inform and guide clinical assessments and interventions. Future research needs to identify specific mechanisms which both precipitate and maintain PTSD and PTSS in this clinical population. This review has highlighted a number of areas that warrant further investigation: (i)

Summary

The experience of childhood cancer is a highly distressing and chronic life event which extends beyond the survivor to the entire family system. Children must endure a number of lengthy and aversive diagnostic procedures and treatments, frequently accompanied by short and long-term side effects. Accordingly, the construct of posttraumatic stress has proved a useful framework for the conceptualization of the associated psychological sequelae in childhood cancer survivors and their parents.

References (106)

  • S. Joseph et al.

    Psychosocial perspectives on post-traumatic theories of post-traumatic stress

    Clinical Psychology Review

    (1995)
  • M. Kangas et al.

    Posttraumatic stress disorder following cancer. A conceptual and empirical review

    Clinical Psychology Review

    (2002)
  • A.E. Kazak et al.

    Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers

    Journal of the American Academy of Child and Adolescent Psychiatry

    (1998)
  • A.C. McFarlane

    Posttraumatic phenomena in a longitudinal study of children following a natural disaster

    Journal of the American Academy of Child and Adolescent Psychiatry

    (1987)
  • D. Pelcovitz et al.

    Posttraumatic stress disorder in mothers of pediatric cancer survivors

    Psychosomatics

    (1996)
  • B. Pfefferbaum

    Posttraumatic stress disorder in children: A review of the past 10 years

    Journal of the American Academy of Child and Adolescent Psychiatry

    (1997)
  • B. Pfefferbaum et al.

    Contagion in stress — An infectious disease model for posttraumatic stress in children

    Child and Adolescent Psychiatric Clinics of North America

    (1998)
  • K. Salmon et al.

    Posttraumatic stress disorder in children: The influence of developmental factors

    Clinical Psychology Review

    (2002)
  • M.P. Shannon et al.

    Children exposed to disaster: I. Epidemiology of post-traumatic symptoms and symptom profiles

    Journal of the American Academy of Child and Adolescent Psychiatry

    (1994)
  • M.L. Stuber et al.

    Posttraumatic symptoms in childhood leukemia survivors and their parents

    Psychosomatics

    (1996)
  • M. Stuber et al.

    Posttraumatic stress responses in children with life-threatening illnesses

    Child and Adolescent Psychiatric Clinics of North America

    (2003)
  • J.E. Tedstone et al.

    Posttraumatic stress disorder following medical illness and treatment

    Clinical Psychology Review

    (2003)
  • American Academy of Child and Adolescent Psychiatry

    Summary of the practice parameters for the assessment and treatment of children and adolescents with posttraumatic stress disorder

    Journal of the American Academy of Child and Adolescent Psychiatry

    (1998)
  • American Psychiatric Association

    Diagnostic and statistical manual of mental disorders

    (1994)
  • F.D. Armstrong et al.

    Educational issues in childhood cancer

    School Psychology Quarterly

    (1995)
  • L. Barakat et al.

    Families surviving childhood cancer: A comparison of posttraumatic stress symptoms with families of healthy children

    Journal of Pediatric Psychology

    (1997)
  • L. Barakat et al.

    Posttraumatic stress symptoms and stressful life events predict the long-term adjustment of survivors of childhood cancer and their mothers

    Journal of Clinical Psychology in Medical Settings

    (2000)
  • M. Best et al.

    Parental distress during pediatric leukemia and Posttraumatic Stress Symptoms (PTSS) after treatment ends

    Journal of Pediatric Psychology

    (2001)
  • K. Boman et al.

    Psychological long-term coping with experiences of disease and treatment in childhood cancer survivors

    Acta Paediatrica

    (1995)
  • N. Breslau et al.

    Traumatic events and posttraumatic stress disorder in an urban population of young adults

    Archives of General Psychiatry

    (1991)
  • C.R. Brewin et al.

    Meta-analysis of risk factors for posttraumatic stress disorder in trauma-exposed adults

    Journal of Consulting and Clinical Psychology

    (2000)
  • C.R. Brewin et al.

    A dual representation theory of posttraumatic stress disorder

    Psychological Review

    (1996)
  • C.R. Brewin et al.

    Psychological theories of posttraumatic stress disorder

    Clinical Psychology Review

    (2003)
  • R.T. Brown et al.

    Posttraumatic stress symptoms in adolescent survivors of childhood cancer and their mothers

    Journal of Traumatic Stress

    (2003)
  • R.A. Bryant et al.

    Coping style and post-traumatic stress disorder following severe traumatic brain injury

    Brain Injury

    (2000)
  • R. Butler et al.

    Brief report: The assessment of posttraumatic stress disorder in pediatric cancer patients and survivors

    Journal of Pediatric Psychology

    (1996)
  • Cancer Facts and Figures. (2002). American Cancer Society....
  • E. Cauffman et al.

    Posttraumatic stress disorder among female juvenile offenders

    Journal of the American Academy of Child and Adolescent Psychiatry

    (1998)
  • T. Dalgleish

    Cognitive approaches to posttraumatic stress disorder: The evolution of multirepresentational theorizing

    Psychological Bulletin

    (2004)
  • J.R. Davidson

    Issues in the diagnosis of post-traumatic stress disorder

  • J.R. Davidson et al.

    Post-traumatic stress disorder in the community: An epidemiological study

    Psychological Medicine

    (1991)
  • J.R. Davidson et al.

    A diagnostic and family study of posttraumatic stress disorder

    American Journal of Psychiatry

    (1985)
  • L. Davis et al.

    Posttraumatic stress disorder in children and adolescents: A review and analysis

    Clinical Child and Family Psychology Review

    (2000)
  • M. De-Vries et al.

    Natural course of symptoms in Cambodia veterans: A follow-up study

    Psychological Medicine

    (1999)
  • C. Eiser

    Practitioner review: long-term consequences of childhood cancer

    Journal of Child Psychology and Psychiatry

    (1998)
  • C. Eiser et al.

    Quality of life following treatment for a malignant primary bone tumor around the knee

    Sarcoma

    (1997)
  • C. Eiser et al.

    Examining the psychological consequences of surviving childhood cancer: Systematic review as a research method in pediatric psychology

    Journal of Pediatric Psychology

    (2000)
  • S.J. Erickson et al.

    Trauma and personality correlates in long term pediatric cancer survivors

    Child Psychiatry and Human Development

    (2001)
  • C.A. Essau et al.

    Incidence of post-traumatic stress disorder in adolescents

    Zeitschrift fur Kinder- und Jugendpsychiatrie und Psychotherapie

    (1999)
  • K.E. Fletcher

    Childhood posttraumatic stress disorder

  • Cited by (0)

    View full text