- Email: [email protected]
Posttraumatic stress responses in children with life-threatening illnesses
Child Adolesc Psychiatric Clin N Am 12 (2003) 195 – 209
Posttraumatic stress responses in children with life-threatening illnesses Margaret L. Stuber, MDa,*, Eyal Shemesh, MDb, Glenn N. Saxe, MDc a
Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, 48-240A NPI, Los Angeles, CA 90095, USA b Department of Psychiatry, Box 1230, 1 Gustave L. Levy Place, New York, NY 10029, USA c Department of Child Psychiatry, Boston Medical Center, Boston University, Boston, MA, USA
The diagnosis of a life-threatening illness in a child is often a shocking experience for the child and his or her family. Aggressive, life-preserving treatment is also stressful to all persons concerned. Only over the past 20 years has there been serious consideration as to whether the response of individuals to medical life-threat could be seen as similar to the response that has been described in response to interpersonal violence or natural disasters. Before the publication of the ‘‘Diagnostic and Statistical Manual of Mental Disorders,’’ edition 4 (DSM-IV) in 1994 [1], ‘‘chronic medical illness’’ was specifically excluded as a potential precipitant of posttraumatic stress disorder (PTSD). In the field trials conducted in preparation for the fourth edition, however, a group of 24 adolescent cancer survivors and their mothers were evaluated for PTSD [2]. The results of this field trial and others have provided data that prompted the inclusion of medical illness as a cause of PTSD in the text of DSM-IV and, thereafter, in DSM-IV-TR [3]. Since that time, there have been published studies of posttraumatic stress symptoms in various medical populations—in adults and children—including patients with cancer, burns, heart disease, and organ transplantation. As was
Work for this article supported by Substance Abuse and Mental Health Services Administration funding to the National Child Traumatic Stress Network (G. S., M. S., E. S.), KO8-MH63755 award and a New Land Foundation award (E. S.) and the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services (R40 MC00120) (M. S.). * Corresponding author. E-mail address: [email protected] (M.L. Stuber). 1056-4993/03/$ – see front matter D 2003, Elsevier Science (USA). All rights reserved. doi:10.1016/S1056-4993(02)00100-1
196
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
found by the DSM-IV field trial study, pediatric survivors and their parents report symptoms. Siblings also have become a recent focus of interest (A. Kazak, personal communication, 2002). Although it seems that the concept of posttraumatic stress is applicable to adult and pediatric ‘‘medical’’ patients and their families, many unanswered questions remain. One of the basic questions for any clinical research always has been the ‘‘so what’’ question: does the topic of inquiry represent a clinically significant problem? In the case of PTSD, investigators have wondered whether these symptoms, unrecognized in the past, cause real functional impairment or clinically important distress. It is not clear what number of symptoms, severity of symptoms, or level of impairment is necessary for posttraumatic stress symptoms to be clinically significant. Beyond these basic questions about diagnostic requirements from the disorder itself are the applied theoretical and practical questions about what constitutes the traumatic event in medical illness and if this event differs for children and parents. It is still not clear what factors predict who will develop and sustain symptoms or whether children who are exposed to medical trauma display similar symptoms to children who are exposed to other types of traumatic events. These issues are important to understanding how posttraumatic stress symptoms impact on medical and psychiatric care and are essential to the design of interventions to prevent and treat these symptoms. Other theoretical questions are raised that offer a challenge—and opportunity— to examine basic concepts related to PTSD. Parents are technically ‘‘witnesses’’ to trauma when a child goes through a life-threatening illness. PTSD symptoms have been well documented in caregivers of children who were traumatized by violent or war-related acts [4 –6] and in cases of traumatization caused by medical illness [7 –11]. The parents’ role with regard to their medically ill children is more complicated than witnesses, because they are decision makers and participants in the treatment. In PTSD that is related to the treatment of medical illness (eg, a transplant), children may view the ‘‘perpetrators’’ as the physicians or the parents (who consented to the procedure and may hold the protesting child). In what ways do symptoms differ if one is a ‘‘witness,’’ a ‘‘victim,’’ a ‘‘caregiver,’’ or a ‘‘perpetrator’’? Which of these titles best describes the role a parent plays as the decision maker for painful medical procedures? Developmental considerations also prove to be important to understanding the reactions to this type of trauma as development has affected response to other traumas [6]. At what age does a child understand the complicated role that a parent must play regarding the illness and its treatment? Does it matter to the child-victim whether the perpetrator is truly helping the child and saving his or her life (as in the case of a physician who performs a transplant) versus a perpetrator who is intentionally causing harm (as in the case of violent acts)? Does this situation engender confusion similar to that experienced by children who are physically abused ‘‘because they deserve it’’ and supposedly for their own good? Medical life-threat also offers an unusual opportunity to examine physical manifestations of emotionally traumatic events and begin to examine the effects
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
197
of potential pharmacologic interventions. For example, does pain medication make it less likely that one will lay down traumatic memories [12]? If so, is this caused by decreased autonomic arousal, impaired memory formation, or simply less physical trauma? The authors examine the limited data available on these questions and the ongoing work in this rapidly growing aspect of trauma research. Their focus is emotional traumatization that results from life-threatening medical illness and treatment and not on the experience of (unrelated) traumatic experiences in medically ill individuals. The authors further restrict the discussion to traumatization caused by medical illness, not physical injuries that also may be treated in a hospital, although they acknowledge that this distinction often is blurred in clinical practice. Details of traumatic stress responses of children and adolescents to physical injury recently have been reviewed elsewhere [13].
Epidemiology of posttraumatic stress disorder symptoms in medically ill patients Documentation of symptoms of PTSD in adult and child survivors of serious medical illnesses has accumulated rapidly since 1994. This article does not include all published papers but provides an overview of an increasingly voluminous body of literature. Adults with life-threatening medical illness Cancer The investigation of PTSD symptoms in adult cancer survivors has produced a substantial number of published papers [14 – 30]. These studies suggest that the traumatic response to medical life-threat is related to exposure variables in similar ways to other types of traumatic responses. Only 3% to 6% of node-negative, or stage 0-IIIA, breast cancer survivors reported current levels of symptoms that meet criteria for PTSD [16,19], compared to 12% to 14% after operable breast cancer [29] and 12% to 19% of breast cancer survivors who experienced aggressive chemotherapy, resection, and a bone marrow transplant [22]. Another study that directly compared PTSD in breast cancer patients did not find a significant difference between patients who did or did not undergo bone marrow transplantation. The researchers reported high (35%) rates of PTSD overall, which suggested a ‘‘ceiling effect’’ or some kind of selection bias in this particular study [24]. Cardiac disease Posttraumatic stress disorder has been reported to be linked to cardiovascular risk factors in war veterans [31], but only recently did several reports [32 – 37] address PTSD symptoms that are caused by (rather than associated with)
198
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
myocardial infarction (MI). Two surveys [36,37] found rates of approximately 10% of above-threshold acute PTSD after MI in patients surveyed using selfreport questionnaires. Bennett et al [33] reported that PTSD symptoms reported immediately after the MI had remitted in many of the patients by 3 months after discharge. Several studies that investigated a cohort of patients who had a heart transplant over different time frames reported—similarly to the MI studies—a range of 10.5% to 17% of PTSD in patients after the transplant [11,38,39] and a range of 7% to 18% ‘‘likely’’ and ‘‘probable’’ PTSD in family caregivers of this cohort [11]. PTSD symptoms were associated strongly with poor medical outcome in this group of patients. Parents of children with serious medical illness Since the initial DSM-IV field trial results [9], which found that mothers of pediatric cancer survivors exhibited significantly more PTSD symptoms than mothers of healthy children, there have been several studies of parents of children with serious medical illnesses [8,10,40 – 44]. The largest [8,40,41,45] was a study of a cohort of 309 mothers and 213 fathers of childhood cancer survivors, compared to 211 mothers and 114 fathers of a healthy control group. Of the survivors’ mothers, 10.1% reported severe levels of current symptoms of PTSD, and 27% reported moderate levels of symptoms. The mothers in the comparison group reported 3% severe and 18.2% moderate levels ( P = 0.001). Of the fathers of survivors, 7.1% reported severe and 28.35 reported moderate symptoms of PTSD, compared to 0% severe and 17.3% moderate levels in the fathers in the comparison group ( P < 0.001). In a study of mothers of children who had undergone kidney, heart, or liver transplantation [46], of the 164 participants who completed the PTSD measure, 26.8% (n = 44) met full diagnostic criteria for PTSD (‘‘PTSD positive’’). Thirty-one percent (n = 27) of parents of liver transplant recipients were PTSD positive as compared to 25.5% (n = 12) of parents of kidney transplant recipients and 17.2% (n = 5) of parents of heart transplant recipients. The difference by type of transplant was not statistically significant ( P > 0.1). When PTSD was compared according to ethnicity and divided into three categories (nonHispanic white, Hispanic, and other), PTSD also did not differ significantly by ethnic group ( P > 0.1).
Studies focusing primarily on children Cancer Three groups of studies have examined the relationship between cancer and PTSD among children. In the earliest published research study, nine children who underwent bone marrow transplant for hematologic and malignant disorders were followed longitudinally for evidence of PTSD. Symptoms consistent with PTSD were observed before the transplant, which elevated at 3 months after transplant assessment and did not return to baseline by the 12-month assessment
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
199
[46]. The DSM-IV field trials evaluated adolescent cancer survivors and their mothers and found that a substantial number of survivors and mothers reported symptoms consistent with PTSD [2,9,47]. Others reported similar results in survivors [48]. Pelcovitz et al [47] examined 23 adolescent cancer survivors, 27 physically abused and 23 healthy, nonabused adolescents. Thirty-five percent of cancer patients versus only 7% of abused adolescents met lifetime PTSD criteria. Not surprisingly, cancer survivors, compared with victims of abuse, viewed their families as significantly more caring. In contrast, a large study [10,45] of childhood cancer survivors evaluated 309 childhood cancer survivors, 8 to 20 years old, an average of almost 6 years after cancer treatment. These children had no evidence of cancer at the time of evaluation and represented various diagnostic groups: 38% acute lymphoblastic leukemia (ALL), 10% Wilms’ tumor, 9% sarcomas, 8% acute non-lymphoblastic leukemia, 8% lymphomas, and 6% Hodgkin’s disease. They were compared to 219 healthy children, aged 8 to 20 years. Both groups completed the PTSD Reaction Index. Of the cancer survivor children, 2.6% reported severe PTSD symptoms, and 12.1% reported symptoms in the moderate range. In the comparison group, 3.4% reported severe PTSD symptoms, and 12.3% reported symptoms in the moderate range. The similar rates of PTSD symptoms in the cancer and comparison group are important and contrast to the other two studies of PTSD in childhood cancer survivors. Solid organ transplantation Posttraumatic stress disorder symptoms and their correlates in children after transplant were first described in 1993 [13]. Studies have found that substantial symptoms are reported by approximately 30% of child recipients of solid organ transplantation [49 – 51]. These studies used self-report measures and not a full psychiatric interview tool. In the largest study to date [51], 99 recipients of heart, liver, or kidney transplants aged 12 to 20 years at time of interview (M = 15.7) were assessed for symptoms of PTSD. These children were assessed 1 to 14.5 years after transplant (M = 7.3), having been 1.2 to 18.3 years old at the time of transplant. Of the entire group, 31.3% (31/99) reported diagnostic levels of PTSD symptoms occurring at least twice a month, with 13.3% (13/99) of adolescents reporting diagnostic PTSD symptoms occurring at least twice a week. The type of transplant did not influence the rate of PTSD. Although PTSD symptoms are well documented as a result of serious medical illnesses in adults and children, a few cautionary remarks are necessary. Methods of detection of posttraumatic stress disorder Studies vary widely in the methods used to detect PTSD and, with few exceptions, most do not use a clinical interview but rather a self-report questionnaire that may not accurately reflect a clinical diagnosis. The use of different tools and different cutoff points make it difficult to compare data among sites.
200
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
Nature of illness Green et al [19] did not detect significant PTSD symptoms in women who were diagnosed with node-negative breast cancer. These results were somewhat similar to the aforementioned study of child survivors of cancer [40,41,53], which found a low frequency of reported above-threshold PTSD symptoms in these children, who were surveyed 1 year or more after diagnosis. Whereas cancer is undoubtedly a life-threatening condition, the life-threat, at times, is not as acute or immediate as in the case of MI or a transplant. One of the authors of this article (Shemesh et al, unpublished data) surveyed a cohort of 55 adults who suffered from long-standing heart failure and found few significant symptoms of PTSD (only 1 met threshold criterion, compared with 10% of MI patients who were surveyed using the same methods). The nature of the illness (acute versus chronic) should be taken into account. It is probable that PTSD symptoms develop primarily in patients who suffer from life-threatening conditions and not from other types of medical illness. Timing of assessment The time since diagnosis or treatment is important not only as a marker of the time since traumatization. In children who have faced medical life-threat, it also is related to disease severity and likelihood of long-term survival. Developmental considerations Developmental differences alter the type of response to trauma at different ages [6]. It is possible that traumatization at different stages results in different psychopathology, depending on the child’s understanding of the trauma [52] and his or her degree of independence. Evidence exists that some medical illnessrelated PTSD symptoms may not appear until adolescence or young adulthood [54,55]. ‘‘Lumping together’’ children from different stages of maturity and ages, which is what most studies do, may lead to inability to detect some attributes of traumatization as experienced at different stages. On the other hand, stratifying by age results in a loss of statistical power and requires much larger samples.
Nature of the stressor Many stressful events happen in the course of a chronic illness, and many of these may be traumatic. Which of these are more likely to be the cause of PTSD is unknown but has been the focus of recent research. It seems that medical procedures and treatments, such as transplantation and chemotherapy, are more often cited as traumatic events by children who report PTSD symptoms than are any other disease-related traumatic events [13,44,56]. Hence, the trauma, more often than not, is ‘‘inflicted’’ by caregivers or medical professionals rather than perceived as a disease entity that is not under human control. This view of trauma is consistent with other reports that show that traumatic experiences, more often than not, are reported in relation to events that are related to the
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
201
deeds of other humans (eg, combat experience, rape) rather than other types of traumatization [56].
Predictors for the development of posttraumatic stress disorder in medically ill patients The study of predictors and risk factors for the development of PTSD is rapidly advancing [57,58], partly because it is widely recognized as an important step on the way to develop effective treatment strategies. Trauma that is associated with the treatment of medical illness (such as transplantation) provides a unique opportunity to study risk factors for PTSD prior to traumatization; indeed, medical-illness related procedures often belong to a rare group of ‘‘scheduled’’ traumas. Such prospective studies are currently under way; they may allow a better understanding of traumatization in general, not only medicalillness related PTSD. At the time of submission of this review, however, most studies looking at predictors for PTSD that is related to medical illness were either cross-sectional or conducted after the trauma has occurred. Following is a concise summary of some of the findings to date: Severity and nature of the stressor: One of the most important determinants of PTSD severity is the severity of the trauma itself and proximity to it [58]. As described above, increasing severity of the medical illness (ie, degree of lifethreat, as in the case of node-negative versus operable breast cancer) and higher degrees of acuity (eg, chronic heart failure versus acute MI) are positively associated with the development of PTSD. There is evidence that the important factor is the patient’s appraisal of life-threat, not objective statistics or clinicians’ determinations [21,53]. Social supports: Decreased social supports, measured by different methods, are consistently reported to be associated with severity or occurrence of medicalillness PTSD [11,14,21,30,37,59]. Avoidant coping style, or avoidant behavior, was reported to be associated with PTSD [20,21,30,37,50], although only one of these studies [21] examined the relevance of pre-trauma coping style. It is unclear whether this association represents a risk factor, a consequence, or a manifestation of PTSD in medically ill patients. Negative premorbid life events have been reported, in retrospective study designs, to be associated with the development of PTSD in medically ill patients [29,36,60].
Consequences of posttraumatic stress disorder in medically ill patients Although PTSD symptoms are well documented in medically ill patients who suffer from certain life-threatening illnesses, there is less agreement about potential consequences of these symptoms, if any. It is sometimes claimed that
202
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
PTSD symptoms are ‘‘normal’’ in survivors of severe medical illness and should not be addressed or treated. The investigation of sequelae of PTSD in this population is difficult because of the need to control for intervening variables that are related to the illness itself. Examples of problems in the investigation of such long-term sequelae follow.
Decreased life expectancy of affected individuals. By definition, serious medical illness involves a threat to the victim’s life and often decreased life expectancy; therefore, a long-term study of such patients may be hard to conduct. Uncertainty about the nature of the stressor. Life-threatening diseases involve many distinct events, any or all of which may be traumatic [13,44,52,56]. Some of these events include the time of diagnosis, medical procedures (such as a transplant operation), specific effects of the illness itself, and the disability associated with it. These events occur at different stages in the course of the disease and may have different consequences in adulthood. The need to distinguish between the effects of the trauma and of the disease process. For example, a childhood cancer survivor may complain of multiple somatic symptoms because of trauma-related morbidity or secondary residual effects of the cancer and its treatment. The need to distinguish between medically related dysfunction and dysfunction that is related to the PTSD symptoms. Are failing school grades related to PTSD symptoms or to inability to attend regular classes because of a chemotherapy regimen? A specific symptom, such as inability to concentrate, may be attributed to the medical illness or to a psychiatric disorder [61]. Despite these difficulties, several studies of the consequences of PTSD in medically ill children and their parents shed light on the potential importance of this disorder as a determinant of medical outcome, biologic correlates of trauma, and psychiatric morbidity. A small study [62] examined the physiologic correlates of chronic PTSD in mothers of childhood cancer survivors. Participants included 21 mothers of pediatric cancer survivors with (n = 14) and without PTSD symptoms (n = 7) and control mothers of healthy children (n = 8). Cortisol, dopamine, and norepinephrine levels were assessed from a 12-hour overnight urine collection. As hypothesized, there were significant group differences in the levels, as would have been predicted from the body of literature addressing PTSD in other types of trauma. Essentially similar results were reported in a study of breast cancer patients [26]. A study of 40 adolescent and young adult survivors of pediatric cancer were surveyed for symptoms of somatization, PTSD, and personality traits [63,64]. Survivors who reported PTSD symptoms that met diagnostic threshold had more somatic symptoms and greater psychological distress and received a lower rating of general functioning (GAF score). Some similar findings resulted from a study of 78 young adult survivors of childhood cancer aged 18 to 37 years. In this study, one fifth of all the young adults surveyed met diagnostic criteria for PTSD.
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
203
The diagnosis of PTSD was associated with a general heightened level of distress and an increased level of perception of disease threat but not with the objective assessment of disease severity [53]. A subgroup of 51 childhood cancer survivors aged 18 to 37 years were assessed using a more elaborate protocol. Of this group, 22% met criteria for PTSD and 30% had severe late effects of therapy. None of the survivors with PTSD was married, compared to 23% of the non-PTSD group. Survivors with PTSD reported poorer quality of life across all domains, with the greatest differences reported in social functioning, emotional well-being, and role limitations caused by emotional health and pain. Survivors without PTSD did not differ from population norms. All subscales on the psychological distress measure were higher for persons with PTSD. The summative score for psychological distress was in the upper ninety-seventh percentile compared to a normative population. Some of these differences could be related to the findings that moderate and severe ‘‘late effects’’ of treatment were more common in the group with PTSD [65]. Ongoing medical problems might act to sustain chronic symptoms of PTSD or may be indictors of more traumatic exposure. The relationship between health concerns and PTSD also has been observed in other studies. In a longitudinal, prospective study of 101 adult survivors of heart transplantation, PTSD was the strongest predictor of cardiac morbidity surpassing other risk factors for morbidity in this group [38]. One potential mediator of these poor outcomes is nonadherence to medical recommendations. In a study of 19 child and adolescent survivors of liver transplantation who were followed for at least 1 year after transplant, nonadherence to medications was significantly more common in children who displayed abovethreshold PTSD symptoms [50]. An association between PTSD and nonadherence to captopril was reported in a study of 102 adult survivors of MI who were followed for 1 year [37], and nonadherence to aspirin was associated with PTSD in a different cohort of 65 MI survivors [37]. Nonadherence to medications may be related to the avoidance dimension of PTSD (patients who avoid taking the medication because it is a traumatic reminder of the illness), and the avoidance dimension of PTSD accounted for much of the association with nonadherence in the pediatric transplant study [50]. In the aggregate, these studies established the importance of PTSD as a correlate, if not as a direct contributor, to serious psychiatric and medical morbidity in survivors of medical life-threat. Some of these studies strongly suggested that PTSD could be associated with lethal consequences in certain groups of medically ill patients.
Need for prevention and treatment With the accumulating data suggesting that posttraumatic stress responses can lead to medical and psychological morbidity, appropriate interventions for the prevention and treatment of traumatic stress responses to medical life-threat must
204
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
be developed. The tremendous opportunity for productive intervention is supported by a small case series that reported significant improvement in the medical adherence of pediatric transplant patients who were treated for PTSD [50]. Previous work with medically ill children is promising as interventions are developed for traumatic stress responses in the medically ill population. A primary target is decreasing helplessness. Although life-threatening diagnosis remains an unexpected traumatic event, many of the other potentially traumatic aspects of medical treatment of life-threatening conditions can be anticipated, which allows interventions to decrease the fear, helplessness, and horror associated with the treatment events. There is an extensive literature on preparation of children for medical procedures. The impact of preparation on posttraumatic stress symptoms has not been investigated systematically, however. Similarly, although medical life-threat generally occurs in a supportive family setting [48] and seems to lead to significant traumatic responses in the family [41], there has been limited study of family interventions (Kazak, personal communication, 2002). Few trials of medication have been conducted to treat traumatic stress symptoms in medically ill children. The reasons for this lack of data may relate in part to the methodologic and practical difficulties that are encountered in the study of any type of psychiatric treatment in medically ill individuals [61]. These difficulties include (1) the reluctance to test a medication in patients who may decompensate medically and may bias the results of a medication trial, (2) problems using a medication in a setting in which many other medications are used (determining which side effect is related to which medication may be difficult, and drug-drug interactions may not be known), (3) difficulty engaging seriously ill patients in a structured protocol because of physical inability to attend sessions on a regular basis or because of scheduling conflicts in patients who are seeing many specialists, (4) reluctance of medical patients to seek psychiatric care. Given the potential benefits, however, the development of efficacious treatment and preventative measures for PTSD in medically ill pediatric patients and their families is a high priority for trauma researchers. Research with PTSD caused by other events has shown that it is often a highly treatable condition. However, treatment strategies cannot simply extrapolate from the medically well population because of the considerations presented previously. There is a need for a dedicated investigation of specific treatment approaches in medically ill patients.
Clinical approaches to children with posttraumatic stress disorder in medical settings Until interventions have been subjected to rigorous study as to efficacy, the following guidelines are offered to help clinicians develop a sensible approach to intervention in medically ill children. 1. Because the perception of life-threat is a critically important determination of outcome, it is the psychiatrist’s role to understand the child and family’s
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
2.
3.
4.
5.
205
perceptions and the opinions of the medical team regarding the child’s medical condition, intensity of medical and surgical treatment, and likely prognosis. This role requires a high degree of communication with the child and parents and the child’s medical team. The psychiatrist can use this knowledge to facilitate communication effectively between the child, parents, and medical team about the child’s medical condition and help the medical and surgical team understand the perspective of the family [66]. It often is difficult for the medical team to comprehend that their life-saving treatments could be perceived as traumatic by the pediatric patient and his or her family. The psychiatric consultant can help by learning the specific aspects of the treatment or procedure that are distressing to a given child and developing interventions with the medical and surgical team to minimize this distress without using sedation with the resultant loss of control. Such interventions often involve giving the child as much control over the treatment or procedure as possible. Desensitizing interventions, based on established behavioral principles, also can be useful. Pretreatment with medications that decrease pain without causing confusion or perceived loss of control may be helpful in decreasing trauma symptoms and treatment avoidance and nonadherence. Pain and anxiety seem to amplify the imprinting of traumatic reminders and the conditioning of specific reactions. For example, increasing the morphine given to a burn injured child while in the hospital diminishes the risk of PTSD 6 months after discharge [12]. The psychiatrist should actively encourage the medical team to treat anxiety and pain aggressively. The psychiatric consultant should actively promote the child and family’s resiliency. Effective interventions for children and families who are coping with a devastating stressor, such as a severe medical illness, are built on the definable strengths of the child and family. Identification of traumatic reminders can help minimize avoidance by directly addressing the symptoms associated with re-experiencing the event. The child, family, and medical team can be helped by the psychiatric consultant to recognize traumatic reminders and develop ways of dealing with them.
Recommendations for future research Despite the compelling need to better understand prevention and treatment of medically related traumatic stress symptoms, little is still known about the impact of life-threat versus medical interventions, much less the impact of any specific illness. This lack of knowledge is partly because it is a new area of research, but it is also because this is a difficult subject to study. There are several reasons why it is so difficult. 1. The relatively small number of children with serious illnesses makes it difficult to mount an effective study at any single institution.
206
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
2. The need to account for the effects of the fluctuation of the illness itself as a determinant of outcome leads to a need for complicated designs and larger samples. 3. Development issues require that a small range of age be included in any given analysis. 4. Most medically ill children are never seen by psychiatry or psychology, because the need is not appreciated. There is a need to study and validate an accepted assessment measure that can be used in collaborative studies across multiple sites. In the meantime, a concerted educational effort that targets pediatricians and family medicine physicians is needed to disseminate and enhance knowledge and awareness of this disorder. This article is offered as a step in this direction.
Summary Posttraumatic stress symptoms have been reported in response to various serious medical illnesses in adults and children. Not surprisingly, posttraumatic stress is probably more common in response to acute, life-threatening, events that are related to the illness. Emerging data suggest that children often experience life-saving medical procedures as traumatic, which puts caretakers and medical personnel in the role of perpetrators for the children. Trauma symptoms are also reported as common and severe in caregivers. Both of these issues have been previously poorly understood and should be addressed in assessment and treatment. As with other traumatic events, developmental considerations, the nature and severity of the event itself, social supports, and premorbid exposure to negative life events are also important issues to consider in developing appropriate interventions. The importance of developing prevention and treatment for PTSD in medically ill children and adults includes increased morbidity and mortality (eg, nonadherence to medications) and psychiatric sequelae and decreased quality of life. Obstacles to systematic study of a psychiatric intervention for this group include difficulties assessing multidrug regimens and cognitive treatment effects in this group. The relative stability of social supports and the potential use of preventive measures make this an attractive population for intervention. Clinicians and researchers are encouraged to work together to develop and use uniform screening and assessment methods that will help to identify cases and facilitate the multicenter trials that are vital to increasing knowledge in this patient population.
References [1] American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4th edition. Washington, DC: American Psychiatric Association; 1994.
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
207
[2] Alter CL, Pelcovitz D, Axelrod A, Goldenberg B, Harris H, Meyers B, et al. Identification of PTSD in cancer survivors. Psychosomatics 1996;37:137 – 43. [3] American Psychiatric Association. Diagnostic and statistical manual of mental disorders, text revision. 4th edition. Washington, DC: American Psychiatric Association; 2000. [4] Laor N, Wolmer L, Mayes LC, Gershon A, Weizman R, Cohen DJ. Israeli preschool children under Scuds: a 30-month follow-up. J Am Acad Child Adolesc Psychiatry 1997;36:349 – 56. [5] Laor N, Wolmer L, Cohen DJ. Mothers’ functioning and children’s symptoms 5 years after a SCUD missile attack. Am J Psychiatry 2001;158:1020 – 6. [6] Widows MR, Jacobsen PB, Fields KK. Relation of psychological vulnerability factors to posttraumatic stress disorder symptomatology in bone marrow transplant recipients. Psychosom Med 2000;62:873 – 82. [7] Heiney SP, Neuberg RW, Myers D, Bergman LH. The aftermath of bone marrow transplant for parents of pediatric patients: a post-traumatic stress disorder. Oncol Nurs Forum 1994;21: 843 – 7. [8] Kazak AE, Stuber ML, Barakat LP, Meeske K, Guthrie D, Meadows AT. Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers. J Am Acad Child Adolesc Psychiatry 1998;37:823 – 31. [9] Pelcovitz D, Goldenberg B, Kaplan S, Weinblatt M, Mandel F, Meyers B, et al. Posttraumatic stress disorder in mothers of pediatric cancer survivors. Psychosomatics 1996;37:116 – 26. [10] Stuber ML. Psychiatric sequelae in seriously ill children and their families. Psychiatr Clin N Am 1996;19:481 – 93. [11] Stuber ML, Nader K, Yasuda P, Pynoos RS, Cohen S. Stress responses after pediatric bone marrow transplantation: preliminary results of a prospective longitudinal study. J Am Acad Child Adolesc Psychiatry 1991;30:952 – 7. [12] Saxe G, Stoddard F, Courtney D, Cunningham K, Chawla N, Sheridan R, et al. Relationship between acute morphine and the course of PTSD in children with burns. J Am Acad Child Adolesc Psychiatry 2001;40:915 – 21. [13] Stoddard F, Saxe G. Ten-year research review of physical injuries. J Am Acad Child Adolesc Psychiatry 2001;40(10):1128 – 45. [14] Andrykowski MA, Cordova MJ. Factors associated with PTSD symptoms following treatment for breast cancer: test of the Andersen model. J Trauma Stress 1998;11:189 – 203. [15] Andrykowski MA, Cordova MJ, McGrath PC, Sloan DA, Kenady DE. Stability and change in posttraumatic stress disorder symptoms following breast cancer treatment: a 1-year follow-up. Psychooncology 2000;9:69 – 78. [16] Andrykowski MA, Cordova MJ, Studts JL, Miller TW. Posttraumatic stress disorder after treatment for breast cancer: prevalence of diagnosis and use of the PTSD Checklist-Civilian Version (PCL-C) as a screening instrument. J Consult Clin Psychol 1998;66:586 – 90. [17] Cordova MJ, Andrykowski MA, Kenady DE, McGrath PC, Sloan DA, Redd WH. Frequency and correlates of posttraumatic-stress-disorder-like symptoms after treatment for breast cancer. J Consult Clin Psychol 1995;63:981 – 6. [18] Cordova MJ, Studts JL, Hann DM, Jacobsen PB, Andrykowski MA. Symptom structure of PTSD following breast cancer. J Trauma Stress 2000;13:301 – 19. [19] Green BL, Rowland JH, Krupnick JL, Epstein SA, Stockton P, Stern NM, et al. Prevalence of posttraumatic stress disorder in women with breast cancer. Psychosomatics 1998;39:102 – 11. [20] Hampton MR, Frombach I. Women’s experience of traumatic stress in cancer treatment. Health Care Women Int 2000;21:67 – 76. [21] Jacobsen PB, Sadler IJ, Booth-Jones M, et al. Predictors of posttraumatic stress disorder symptomatology following bone marrow transplantation for cancer. J Consult Clin Psychol 2002;70: 235 – 40. [22] Jacobsen PB, Widows MR, Hann DM, Andrykowski MA, Kronish LE, Fields KK. Posttraumatic stress disorder symptoms after bone marrow transplantation for breast cancer. Psychosom Med 1998;60:366 – 71. [23] Malt UF, Tjemsland L. PTSD in women with breast cancer. Psychosomatics 1999;40:89.
208
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
[24] Mundy EA, Blanchard EB, Cirenza E, Gargiulo J, Maloy B, Blanchard CG. Posttraumatic stress disorder in breast cancer patients following autologous bone marrow transplantation or conventional cancer treatments. Behav Res Ther 2000;38:1015 – 27. [25] Neel ML. Posttraumatic stress symptomatology and cancer. Int J Emerg Ment Health 2000; 2:85 – 94. [26] Pitman RK, Lanes DM, Williston SK, Guillaume JL, Metzger LJ, Gehr GM, et al. Psychophysiologic assessment of posttraumatic stress disorder in breast cancer patients. Psychosomatics 2001;42:133 – 40. [27] Smith MY, Redd W, DuHamel K, Vickberg SJ, Ricketts P. Validation of the PTSD Checklist-Civilian Version in survivors of bone marrow transplantation. J Trauma Stress 1999;12: 485 – 99. [28] Smith MY, Redd WH, Peyser C, Vogl D. Post-traumatic stress disorder in cancer: a review. Psychooncology 1999;8:521 – 37. [29] Stukas Jr AA, Dew MA, Switzer GE, DiMartini A, Kormos RL, Griffith BP. PTSD in heart transplant recipients and their primary family caregivers. Psychosomatics 1999;40:212 – 21. [30] Walker AM, Harris G, Baker A, Kelly D, Houghton J. Post-traumatic stress responses following liver transplantation in older children. J Child Psychol Psychiatry 1999;40:363 – 74. [31] Falger PR, Op den Velde W, Hovens JE, Schouten EG, De Groen JH, Van Duijn H. Current posttraumatic stress disorder and cardiovascular disease risk factors in Dutch Resistance veterans from World War II. Psychother Psychosom 1992;57:164 – 71. [32] Alonzo AA. Acute myocardial infarction and posttraumatic stress disorder: the consequences of cumulative adversity. J Cardiovasc Nurs 1999;13:33 – 45. [33] Bennett P, Conway M, Clatworthy J, Brooke S, Owen R. Predicting post-traumatic symptoms in cardiac patients. Heart Lung 2001;30:458 – 65. [34] Doerfler LA, Pbert L, DeCosimo D. Symptoms of posttraumatic stress disorder following myocardial infarction and coronary artery bypass surgery. Gen Hosp Psychiatry 1994;16:193 – 9. [35] Kutz I, Garb R, David D. Post-traumatic stress disorder following myocardial infarction. Gen Hosp Psychiatry 1988;10:169 – 76. [36] Kutz I, Shabtai H, Solomon Z, Neumann M, David D. Post-traumatic stress disorder in myocardial infarction patients: prevalence study. Isr J Psychiatry Relat Sci 1994;31:48 – 56. [37] Shemesh E, Rudnick A, Kaluski E, et al. A prospective study of posttraumatic stress symptoms and nonadherence in survivors of a myocardial infarction (MI). Gen Hosp Psychiatry 2001; 23:215 – 22. [38] Dew MA, Kormos RL, Roth LH, Murali S, DiMartini A, Griffith BP. Early post-transplant medical compliance and mental health predict physical morbidity and mortality one to three years after heart transplantation. J Heart Lung Transplant 1999;18:549 – 62. [39] Dew MA, Roth LH, Schulberg HC, Simmons RG, Kormos RL, Trzepacz PT, et al. Prevalence and predictors of depression and anxiety-related disorders during the year after heart transplantation. Gen Hosp Psychiatry 1996;18(6 Suppl):48S – 61S. [40] Barakat LP, Kazak AE, Meadows AT, Casey R, Meeske K, Stuber ML. Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children. J Pediatr Psychol 1997;22:843 – 59. [41] Kazak AE, Barakat LP, Meeske K, Christakis D, Meadows AT, Casey R, et al. Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers. J Consult Clin Psychol 1997;65:120 – 9. [42] Landolt MA, Boehler U, Schwager C, Schallberger U, Nuessli R. Post-traumatic stress disorder in paediatric patients and their parents: an exploratory study. J Paediatr Child Health 1998; 34:539 – 43. [43] Manne SL, Du Hamel K, Gallelli K, Sorgen K, Redd WH. Posttraumatic stress disorder among mothers of pediatric cancer survivors: diagnosis, comorbidity, and utility of the PTSD checklist as a screening instrument. J Pediatr Psychol 1998;23:357 – 66. [44] Stuber ML. Psychiatric aspects of organ transplantation in children and adolescents. Psychosomatics 1993;34:379 – 87.
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
209
[45] Stuber ML, Kazak AE, Meeske K, Barakat L. Is posttraumatic stress a viable model for understanding responses to childhood cancer? Child Adolesc Psychiatr Clin N Am 1998;7:169 – 82. [46] Young GS, Mintzer LL, Seacour D, Castan˜eda M, Mesrkhan V, Stuber ML. Symptoms of PTSD in parents of transplant recipients: incidence, severity, and related factors. Pediatrics, in press. [47] Stuber ML, Nader KO, Houskamp BM, Pynoos RS. Appraisal of life threat and acute trauma responses in pediatric bone marrow transplant patients. J Trauma Stress 1996;9:673 – 86. [48] Pelcovitz D, Libov BG, Mandel F, Kaplan S, Weinblatt M, Septimus A. Posttraumatic stress disorder and family functioning in adolescent cancer. J Trauma Stress 1998;11:205 – 21. [49] Butler RW, Rizzi LP, Handwerger BA. Brief report: the assessment of posttraumatic stress disorder in pediatric cancer patients and survivors. J Pediatr Psychol 1996;21:499 – 504. [50] Shemesh E, Lurie S, Stuber ML, Emre S, Patel Y, Vohra P, et al. A pilot study of posttraumatic stress and nonadherence in pediatric liver transplant recipients. Pediatrics 2000;105:E29. [51] Mintzer LL. Posttraumatic stress in adolescent transplant recipients. Dissertation in partial completion of PhD at Northwestern University, 2001. [52] Stuber ML, Housekamp B. Stress and pediatric medical technology. In: Pfeffer CR, editor. Severe stress and mental disturbance in children. p. 249 – 77. [53] Stuber ML, Kazak AE, Meeske K, Barakat L, Guthrie D, Garnier H, et al. Predictors of posttraumatic stress symptoms in childhood cancer survivors. Pediatrics 1997;100:958 – 64. [54] Hobbie WL, Stuber M, Meeske K, Wissler K, Rourke MT, Ruccione K, et al. Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol 2000;18:4060 – 6. [55] Rourke MT, Stuber ML, Hobbie WL, Kazak AE. Posttraumatic stress disorder: understanding the psychosocial impact of surviving childhood cancer into young adulthood. J Pediatr Oncol Nurs 1999;16:126 – 35. [56] Stuber ML, Christakis DA, Houskamp B, Kazak AE. Posttrauma symptoms in childhood leukemia survivors and their parents. Psychosomatics 1996;37:254 – 61. [57] Wolmer L, Laor N, Gershon A, Mayes LC, Cohen DJ. The mother-child dyad facing trauma: a developmental outlook. J Nerv Ment Dis 2000;188:409 – 15. [58] Yehuda R. Risk factors for posttraumatic stress disorder. Washington, DC: American Psychiatric Press; 1999. [59] Dew MA, Kormos RL, DiMartini AF, Switzer GE, Schulberg HC, Roth LH, et al. Prevalence and risk of depression and anxiety-related disorders during the first three years after heart transplantation. Psychosomatics 2001;42:300 – 13. [60] Kelly B, Raphael B, Judd F, Perdices M, Kernutt G, Burnett P, et al. Posttraumatic stress disorder in response to HIV infection. Gen Hosp Psychiatry 1998;20:345 – 52. [61] Shemesh E, Bartell A, Newcorn J. Assessment and treatment of depressive disorders in medically ill children. Current Psychiatry Reports (Current Sciences) 2002;4:88 – 92. [62] Glover DA, Poland RE. Urinary cortisol and catecholamines in mothers of child cancer survivors with and without PTSD. Psychoneuroendocrinology, in press. [63] Erickson SJ, Steiner H. Trauma and personality correlates in long-term pediatric cancer survivors. Child Psychiatry Hum Dev 2001;31:195 – 213. [64] Erickson SJ, Steiner H. Trauma spectrum adaptation: somatic symptoms in long-term pediatric cancer survivors. Psychosomatics 2000;41:339 – 46. [65] Meeske KA, Ruccione K, Globe DR, Stuber ML. Posttraumatic stress, quality of life, and psychological distress in young adult survivors of childhood cancer. Oncol Nurs Forum 2001;28:481 – 9. [66] Skotzko CE, Stowe JA, Wright C, Kendall K, Dew MA. Approaching a consensus: psychosocial support services for solid organ transplantation programs. Progress in Transplantation 2001; 11:163 – 8.
Posttraumatic stress responses in children with life-threatening illnesses Margaret L. Stuber, MDa,*, Eyal Shemesh, MDb, Glenn N. Saxe, MDc a
Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, 48-240A NPI, Los Angeles, CA 90095, USA b Department of Psychiatry, Box 1230, 1 Gustave L. Levy Place, New York, NY 10029, USA c Department of Child Psychiatry, Boston Medical Center, Boston University, Boston, MA, USA
The diagnosis of a life-threatening illness in a child is often a shocking experience for the child and his or her family. Aggressive, life-preserving treatment is also stressful to all persons concerned. Only over the past 20 years has there been serious consideration as to whether the response of individuals to medical life-threat could be seen as similar to the response that has been described in response to interpersonal violence or natural disasters. Before the publication of the ‘‘Diagnostic and Statistical Manual of Mental Disorders,’’ edition 4 (DSM-IV) in 1994 [1], ‘‘chronic medical illness’’ was specifically excluded as a potential precipitant of posttraumatic stress disorder (PTSD). In the field trials conducted in preparation for the fourth edition, however, a group of 24 adolescent cancer survivors and their mothers were evaluated for PTSD [2]. The results of this field trial and others have provided data that prompted the inclusion of medical illness as a cause of PTSD in the text of DSM-IV and, thereafter, in DSM-IV-TR [3]. Since that time, there have been published studies of posttraumatic stress symptoms in various medical populations—in adults and children—including patients with cancer, burns, heart disease, and organ transplantation. As was
Work for this article supported by Substance Abuse and Mental Health Services Administration funding to the National Child Traumatic Stress Network (G. S., M. S., E. S.), KO8-MH63755 award and a New Land Foundation award (E. S.) and the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services (R40 MC00120) (M. S.). * Corresponding author. E-mail address: [email protected] (M.L. Stuber). 1056-4993/03/$ – see front matter D 2003, Elsevier Science (USA). All rights reserved. doi:10.1016/S1056-4993(02)00100-1
196
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
found by the DSM-IV field trial study, pediatric survivors and their parents report symptoms. Siblings also have become a recent focus of interest (A. Kazak, personal communication, 2002). Although it seems that the concept of posttraumatic stress is applicable to adult and pediatric ‘‘medical’’ patients and their families, many unanswered questions remain. One of the basic questions for any clinical research always has been the ‘‘so what’’ question: does the topic of inquiry represent a clinically significant problem? In the case of PTSD, investigators have wondered whether these symptoms, unrecognized in the past, cause real functional impairment or clinically important distress. It is not clear what number of symptoms, severity of symptoms, or level of impairment is necessary for posttraumatic stress symptoms to be clinically significant. Beyond these basic questions about diagnostic requirements from the disorder itself are the applied theoretical and practical questions about what constitutes the traumatic event in medical illness and if this event differs for children and parents. It is still not clear what factors predict who will develop and sustain symptoms or whether children who are exposed to medical trauma display similar symptoms to children who are exposed to other types of traumatic events. These issues are important to understanding how posttraumatic stress symptoms impact on medical and psychiatric care and are essential to the design of interventions to prevent and treat these symptoms. Other theoretical questions are raised that offer a challenge—and opportunity— to examine basic concepts related to PTSD. Parents are technically ‘‘witnesses’’ to trauma when a child goes through a life-threatening illness. PTSD symptoms have been well documented in caregivers of children who were traumatized by violent or war-related acts [4 –6] and in cases of traumatization caused by medical illness [7 –11]. The parents’ role with regard to their medically ill children is more complicated than witnesses, because they are decision makers and participants in the treatment. In PTSD that is related to the treatment of medical illness (eg, a transplant), children may view the ‘‘perpetrators’’ as the physicians or the parents (who consented to the procedure and may hold the protesting child). In what ways do symptoms differ if one is a ‘‘witness,’’ a ‘‘victim,’’ a ‘‘caregiver,’’ or a ‘‘perpetrator’’? Which of these titles best describes the role a parent plays as the decision maker for painful medical procedures? Developmental considerations also prove to be important to understanding the reactions to this type of trauma as development has affected response to other traumas [6]. At what age does a child understand the complicated role that a parent must play regarding the illness and its treatment? Does it matter to the child-victim whether the perpetrator is truly helping the child and saving his or her life (as in the case of a physician who performs a transplant) versus a perpetrator who is intentionally causing harm (as in the case of violent acts)? Does this situation engender confusion similar to that experienced by children who are physically abused ‘‘because they deserve it’’ and supposedly for their own good? Medical life-threat also offers an unusual opportunity to examine physical manifestations of emotionally traumatic events and begin to examine the effects
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
197
of potential pharmacologic interventions. For example, does pain medication make it less likely that one will lay down traumatic memories [12]? If so, is this caused by decreased autonomic arousal, impaired memory formation, or simply less physical trauma? The authors examine the limited data available on these questions and the ongoing work in this rapidly growing aspect of trauma research. Their focus is emotional traumatization that results from life-threatening medical illness and treatment and not on the experience of (unrelated) traumatic experiences in medically ill individuals. The authors further restrict the discussion to traumatization caused by medical illness, not physical injuries that also may be treated in a hospital, although they acknowledge that this distinction often is blurred in clinical practice. Details of traumatic stress responses of children and adolescents to physical injury recently have been reviewed elsewhere [13].
Epidemiology of posttraumatic stress disorder symptoms in medically ill patients Documentation of symptoms of PTSD in adult and child survivors of serious medical illnesses has accumulated rapidly since 1994. This article does not include all published papers but provides an overview of an increasingly voluminous body of literature. Adults with life-threatening medical illness Cancer The investigation of PTSD symptoms in adult cancer survivors has produced a substantial number of published papers [14 – 30]. These studies suggest that the traumatic response to medical life-threat is related to exposure variables in similar ways to other types of traumatic responses. Only 3% to 6% of node-negative, or stage 0-IIIA, breast cancer survivors reported current levels of symptoms that meet criteria for PTSD [16,19], compared to 12% to 14% after operable breast cancer [29] and 12% to 19% of breast cancer survivors who experienced aggressive chemotherapy, resection, and a bone marrow transplant [22]. Another study that directly compared PTSD in breast cancer patients did not find a significant difference between patients who did or did not undergo bone marrow transplantation. The researchers reported high (35%) rates of PTSD overall, which suggested a ‘‘ceiling effect’’ or some kind of selection bias in this particular study [24]. Cardiac disease Posttraumatic stress disorder has been reported to be linked to cardiovascular risk factors in war veterans [31], but only recently did several reports [32 – 37] address PTSD symptoms that are caused by (rather than associated with)
198
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
myocardial infarction (MI). Two surveys [36,37] found rates of approximately 10% of above-threshold acute PTSD after MI in patients surveyed using selfreport questionnaires. Bennett et al [33] reported that PTSD symptoms reported immediately after the MI had remitted in many of the patients by 3 months after discharge. Several studies that investigated a cohort of patients who had a heart transplant over different time frames reported—similarly to the MI studies—a range of 10.5% to 17% of PTSD in patients after the transplant [11,38,39] and a range of 7% to 18% ‘‘likely’’ and ‘‘probable’’ PTSD in family caregivers of this cohort [11]. PTSD symptoms were associated strongly with poor medical outcome in this group of patients. Parents of children with serious medical illness Since the initial DSM-IV field trial results [9], which found that mothers of pediatric cancer survivors exhibited significantly more PTSD symptoms than mothers of healthy children, there have been several studies of parents of children with serious medical illnesses [8,10,40 – 44]. The largest [8,40,41,45] was a study of a cohort of 309 mothers and 213 fathers of childhood cancer survivors, compared to 211 mothers and 114 fathers of a healthy control group. Of the survivors’ mothers, 10.1% reported severe levels of current symptoms of PTSD, and 27% reported moderate levels of symptoms. The mothers in the comparison group reported 3% severe and 18.2% moderate levels ( P = 0.001). Of the fathers of survivors, 7.1% reported severe and 28.35 reported moderate symptoms of PTSD, compared to 0% severe and 17.3% moderate levels in the fathers in the comparison group ( P < 0.001). In a study of mothers of children who had undergone kidney, heart, or liver transplantation [46], of the 164 participants who completed the PTSD measure, 26.8% (n = 44) met full diagnostic criteria for PTSD (‘‘PTSD positive’’). Thirty-one percent (n = 27) of parents of liver transplant recipients were PTSD positive as compared to 25.5% (n = 12) of parents of kidney transplant recipients and 17.2% (n = 5) of parents of heart transplant recipients. The difference by type of transplant was not statistically significant ( P > 0.1). When PTSD was compared according to ethnicity and divided into three categories (nonHispanic white, Hispanic, and other), PTSD also did not differ significantly by ethnic group ( P > 0.1).
Studies focusing primarily on children Cancer Three groups of studies have examined the relationship between cancer and PTSD among children. In the earliest published research study, nine children who underwent bone marrow transplant for hematologic and malignant disorders were followed longitudinally for evidence of PTSD. Symptoms consistent with PTSD were observed before the transplant, which elevated at 3 months after transplant assessment and did not return to baseline by the 12-month assessment
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
199
[46]. The DSM-IV field trials evaluated adolescent cancer survivors and their mothers and found that a substantial number of survivors and mothers reported symptoms consistent with PTSD [2,9,47]. Others reported similar results in survivors [48]. Pelcovitz et al [47] examined 23 adolescent cancer survivors, 27 physically abused and 23 healthy, nonabused adolescents. Thirty-five percent of cancer patients versus only 7% of abused adolescents met lifetime PTSD criteria. Not surprisingly, cancer survivors, compared with victims of abuse, viewed their families as significantly more caring. In contrast, a large study [10,45] of childhood cancer survivors evaluated 309 childhood cancer survivors, 8 to 20 years old, an average of almost 6 years after cancer treatment. These children had no evidence of cancer at the time of evaluation and represented various diagnostic groups: 38% acute lymphoblastic leukemia (ALL), 10% Wilms’ tumor, 9% sarcomas, 8% acute non-lymphoblastic leukemia, 8% lymphomas, and 6% Hodgkin’s disease. They were compared to 219 healthy children, aged 8 to 20 years. Both groups completed the PTSD Reaction Index. Of the cancer survivor children, 2.6% reported severe PTSD symptoms, and 12.1% reported symptoms in the moderate range. In the comparison group, 3.4% reported severe PTSD symptoms, and 12.3% reported symptoms in the moderate range. The similar rates of PTSD symptoms in the cancer and comparison group are important and contrast to the other two studies of PTSD in childhood cancer survivors. Solid organ transplantation Posttraumatic stress disorder symptoms and their correlates in children after transplant were first described in 1993 [13]. Studies have found that substantial symptoms are reported by approximately 30% of child recipients of solid organ transplantation [49 – 51]. These studies used self-report measures and not a full psychiatric interview tool. In the largest study to date [51], 99 recipients of heart, liver, or kidney transplants aged 12 to 20 years at time of interview (M = 15.7) were assessed for symptoms of PTSD. These children were assessed 1 to 14.5 years after transplant (M = 7.3), having been 1.2 to 18.3 years old at the time of transplant. Of the entire group, 31.3% (31/99) reported diagnostic levels of PTSD symptoms occurring at least twice a month, with 13.3% (13/99) of adolescents reporting diagnostic PTSD symptoms occurring at least twice a week. The type of transplant did not influence the rate of PTSD. Although PTSD symptoms are well documented as a result of serious medical illnesses in adults and children, a few cautionary remarks are necessary. Methods of detection of posttraumatic stress disorder Studies vary widely in the methods used to detect PTSD and, with few exceptions, most do not use a clinical interview but rather a self-report questionnaire that may not accurately reflect a clinical diagnosis. The use of different tools and different cutoff points make it difficult to compare data among sites.
200
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
Nature of illness Green et al [19] did not detect significant PTSD symptoms in women who were diagnosed with node-negative breast cancer. These results were somewhat similar to the aforementioned study of child survivors of cancer [40,41,53], which found a low frequency of reported above-threshold PTSD symptoms in these children, who were surveyed 1 year or more after diagnosis. Whereas cancer is undoubtedly a life-threatening condition, the life-threat, at times, is not as acute or immediate as in the case of MI or a transplant. One of the authors of this article (Shemesh et al, unpublished data) surveyed a cohort of 55 adults who suffered from long-standing heart failure and found few significant symptoms of PTSD (only 1 met threshold criterion, compared with 10% of MI patients who were surveyed using the same methods). The nature of the illness (acute versus chronic) should be taken into account. It is probable that PTSD symptoms develop primarily in patients who suffer from life-threatening conditions and not from other types of medical illness. Timing of assessment The time since diagnosis or treatment is important not only as a marker of the time since traumatization. In children who have faced medical life-threat, it also is related to disease severity and likelihood of long-term survival. Developmental considerations Developmental differences alter the type of response to trauma at different ages [6]. It is possible that traumatization at different stages results in different psychopathology, depending on the child’s understanding of the trauma [52] and his or her degree of independence. Evidence exists that some medical illnessrelated PTSD symptoms may not appear until adolescence or young adulthood [54,55]. ‘‘Lumping together’’ children from different stages of maturity and ages, which is what most studies do, may lead to inability to detect some attributes of traumatization as experienced at different stages. On the other hand, stratifying by age results in a loss of statistical power and requires much larger samples.
Nature of the stressor Many stressful events happen in the course of a chronic illness, and many of these may be traumatic. Which of these are more likely to be the cause of PTSD is unknown but has been the focus of recent research. It seems that medical procedures and treatments, such as transplantation and chemotherapy, are more often cited as traumatic events by children who report PTSD symptoms than are any other disease-related traumatic events [13,44,56]. Hence, the trauma, more often than not, is ‘‘inflicted’’ by caregivers or medical professionals rather than perceived as a disease entity that is not under human control. This view of trauma is consistent with other reports that show that traumatic experiences, more often than not, are reported in relation to events that are related to the
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
201
deeds of other humans (eg, combat experience, rape) rather than other types of traumatization [56].
Predictors for the development of posttraumatic stress disorder in medically ill patients The study of predictors and risk factors for the development of PTSD is rapidly advancing [57,58], partly because it is widely recognized as an important step on the way to develop effective treatment strategies. Trauma that is associated with the treatment of medical illness (such as transplantation) provides a unique opportunity to study risk factors for PTSD prior to traumatization; indeed, medical-illness related procedures often belong to a rare group of ‘‘scheduled’’ traumas. Such prospective studies are currently under way; they may allow a better understanding of traumatization in general, not only medicalillness related PTSD. At the time of submission of this review, however, most studies looking at predictors for PTSD that is related to medical illness were either cross-sectional or conducted after the trauma has occurred. Following is a concise summary of some of the findings to date: Severity and nature of the stressor: One of the most important determinants of PTSD severity is the severity of the trauma itself and proximity to it [58]. As described above, increasing severity of the medical illness (ie, degree of lifethreat, as in the case of node-negative versus operable breast cancer) and higher degrees of acuity (eg, chronic heart failure versus acute MI) are positively associated with the development of PTSD. There is evidence that the important factor is the patient’s appraisal of life-threat, not objective statistics or clinicians’ determinations [21,53]. Social supports: Decreased social supports, measured by different methods, are consistently reported to be associated with severity or occurrence of medicalillness PTSD [11,14,21,30,37,59]. Avoidant coping style, or avoidant behavior, was reported to be associated with PTSD [20,21,30,37,50], although only one of these studies [21] examined the relevance of pre-trauma coping style. It is unclear whether this association represents a risk factor, a consequence, or a manifestation of PTSD in medically ill patients. Negative premorbid life events have been reported, in retrospective study designs, to be associated with the development of PTSD in medically ill patients [29,36,60].
Consequences of posttraumatic stress disorder in medically ill patients Although PTSD symptoms are well documented in medically ill patients who suffer from certain life-threatening illnesses, there is less agreement about potential consequences of these symptoms, if any. It is sometimes claimed that
202
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
PTSD symptoms are ‘‘normal’’ in survivors of severe medical illness and should not be addressed or treated. The investigation of sequelae of PTSD in this population is difficult because of the need to control for intervening variables that are related to the illness itself. Examples of problems in the investigation of such long-term sequelae follow.
Decreased life expectancy of affected individuals. By definition, serious medical illness involves a threat to the victim’s life and often decreased life expectancy; therefore, a long-term study of such patients may be hard to conduct. Uncertainty about the nature of the stressor. Life-threatening diseases involve many distinct events, any or all of which may be traumatic [13,44,52,56]. Some of these events include the time of diagnosis, medical procedures (such as a transplant operation), specific effects of the illness itself, and the disability associated with it. These events occur at different stages in the course of the disease and may have different consequences in adulthood. The need to distinguish between the effects of the trauma and of the disease process. For example, a childhood cancer survivor may complain of multiple somatic symptoms because of trauma-related morbidity or secondary residual effects of the cancer and its treatment. The need to distinguish between medically related dysfunction and dysfunction that is related to the PTSD symptoms. Are failing school grades related to PTSD symptoms or to inability to attend regular classes because of a chemotherapy regimen? A specific symptom, such as inability to concentrate, may be attributed to the medical illness or to a psychiatric disorder [61]. Despite these difficulties, several studies of the consequences of PTSD in medically ill children and their parents shed light on the potential importance of this disorder as a determinant of medical outcome, biologic correlates of trauma, and psychiatric morbidity. A small study [62] examined the physiologic correlates of chronic PTSD in mothers of childhood cancer survivors. Participants included 21 mothers of pediatric cancer survivors with (n = 14) and without PTSD symptoms (n = 7) and control mothers of healthy children (n = 8). Cortisol, dopamine, and norepinephrine levels were assessed from a 12-hour overnight urine collection. As hypothesized, there were significant group differences in the levels, as would have been predicted from the body of literature addressing PTSD in other types of trauma. Essentially similar results were reported in a study of breast cancer patients [26]. A study of 40 adolescent and young adult survivors of pediatric cancer were surveyed for symptoms of somatization, PTSD, and personality traits [63,64]. Survivors who reported PTSD symptoms that met diagnostic threshold had more somatic symptoms and greater psychological distress and received a lower rating of general functioning (GAF score). Some similar findings resulted from a study of 78 young adult survivors of childhood cancer aged 18 to 37 years. In this study, one fifth of all the young adults surveyed met diagnostic criteria for PTSD.
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
203
The diagnosis of PTSD was associated with a general heightened level of distress and an increased level of perception of disease threat but not with the objective assessment of disease severity [53]. A subgroup of 51 childhood cancer survivors aged 18 to 37 years were assessed using a more elaborate protocol. Of this group, 22% met criteria for PTSD and 30% had severe late effects of therapy. None of the survivors with PTSD was married, compared to 23% of the non-PTSD group. Survivors with PTSD reported poorer quality of life across all domains, with the greatest differences reported in social functioning, emotional well-being, and role limitations caused by emotional health and pain. Survivors without PTSD did not differ from population norms. All subscales on the psychological distress measure were higher for persons with PTSD. The summative score for psychological distress was in the upper ninety-seventh percentile compared to a normative population. Some of these differences could be related to the findings that moderate and severe ‘‘late effects’’ of treatment were more common in the group with PTSD [65]. Ongoing medical problems might act to sustain chronic symptoms of PTSD or may be indictors of more traumatic exposure. The relationship between health concerns and PTSD also has been observed in other studies. In a longitudinal, prospective study of 101 adult survivors of heart transplantation, PTSD was the strongest predictor of cardiac morbidity surpassing other risk factors for morbidity in this group [38]. One potential mediator of these poor outcomes is nonadherence to medical recommendations. In a study of 19 child and adolescent survivors of liver transplantation who were followed for at least 1 year after transplant, nonadherence to medications was significantly more common in children who displayed abovethreshold PTSD symptoms [50]. An association between PTSD and nonadherence to captopril was reported in a study of 102 adult survivors of MI who were followed for 1 year [37], and nonadherence to aspirin was associated with PTSD in a different cohort of 65 MI survivors [37]. Nonadherence to medications may be related to the avoidance dimension of PTSD (patients who avoid taking the medication because it is a traumatic reminder of the illness), and the avoidance dimension of PTSD accounted for much of the association with nonadherence in the pediatric transplant study [50]. In the aggregate, these studies established the importance of PTSD as a correlate, if not as a direct contributor, to serious psychiatric and medical morbidity in survivors of medical life-threat. Some of these studies strongly suggested that PTSD could be associated with lethal consequences in certain groups of medically ill patients.
Need for prevention and treatment With the accumulating data suggesting that posttraumatic stress responses can lead to medical and psychological morbidity, appropriate interventions for the prevention and treatment of traumatic stress responses to medical life-threat must
204
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
be developed. The tremendous opportunity for productive intervention is supported by a small case series that reported significant improvement in the medical adherence of pediatric transplant patients who were treated for PTSD [50]. Previous work with medically ill children is promising as interventions are developed for traumatic stress responses in the medically ill population. A primary target is decreasing helplessness. Although life-threatening diagnosis remains an unexpected traumatic event, many of the other potentially traumatic aspects of medical treatment of life-threatening conditions can be anticipated, which allows interventions to decrease the fear, helplessness, and horror associated with the treatment events. There is an extensive literature on preparation of children for medical procedures. The impact of preparation on posttraumatic stress symptoms has not been investigated systematically, however. Similarly, although medical life-threat generally occurs in a supportive family setting [48] and seems to lead to significant traumatic responses in the family [41], there has been limited study of family interventions (Kazak, personal communication, 2002). Few trials of medication have been conducted to treat traumatic stress symptoms in medically ill children. The reasons for this lack of data may relate in part to the methodologic and practical difficulties that are encountered in the study of any type of psychiatric treatment in medically ill individuals [61]. These difficulties include (1) the reluctance to test a medication in patients who may decompensate medically and may bias the results of a medication trial, (2) problems using a medication in a setting in which many other medications are used (determining which side effect is related to which medication may be difficult, and drug-drug interactions may not be known), (3) difficulty engaging seriously ill patients in a structured protocol because of physical inability to attend sessions on a regular basis or because of scheduling conflicts in patients who are seeing many specialists, (4) reluctance of medical patients to seek psychiatric care. Given the potential benefits, however, the development of efficacious treatment and preventative measures for PTSD in medically ill pediatric patients and their families is a high priority for trauma researchers. Research with PTSD caused by other events has shown that it is often a highly treatable condition. However, treatment strategies cannot simply extrapolate from the medically well population because of the considerations presented previously. There is a need for a dedicated investigation of specific treatment approaches in medically ill patients.
Clinical approaches to children with posttraumatic stress disorder in medical settings Until interventions have been subjected to rigorous study as to efficacy, the following guidelines are offered to help clinicians develop a sensible approach to intervention in medically ill children. 1. Because the perception of life-threat is a critically important determination of outcome, it is the psychiatrist’s role to understand the child and family’s
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
2.
3.
4.
5.
205
perceptions and the opinions of the medical team regarding the child’s medical condition, intensity of medical and surgical treatment, and likely prognosis. This role requires a high degree of communication with the child and parents and the child’s medical team. The psychiatrist can use this knowledge to facilitate communication effectively between the child, parents, and medical team about the child’s medical condition and help the medical and surgical team understand the perspective of the family [66]. It often is difficult for the medical team to comprehend that their life-saving treatments could be perceived as traumatic by the pediatric patient and his or her family. The psychiatric consultant can help by learning the specific aspects of the treatment or procedure that are distressing to a given child and developing interventions with the medical and surgical team to minimize this distress without using sedation with the resultant loss of control. Such interventions often involve giving the child as much control over the treatment or procedure as possible. Desensitizing interventions, based on established behavioral principles, also can be useful. Pretreatment with medications that decrease pain without causing confusion or perceived loss of control may be helpful in decreasing trauma symptoms and treatment avoidance and nonadherence. Pain and anxiety seem to amplify the imprinting of traumatic reminders and the conditioning of specific reactions. For example, increasing the morphine given to a burn injured child while in the hospital diminishes the risk of PTSD 6 months after discharge [12]. The psychiatrist should actively encourage the medical team to treat anxiety and pain aggressively. The psychiatric consultant should actively promote the child and family’s resiliency. Effective interventions for children and families who are coping with a devastating stressor, such as a severe medical illness, are built on the definable strengths of the child and family. Identification of traumatic reminders can help minimize avoidance by directly addressing the symptoms associated with re-experiencing the event. The child, family, and medical team can be helped by the psychiatric consultant to recognize traumatic reminders and develop ways of dealing with them.
Recommendations for future research Despite the compelling need to better understand prevention and treatment of medically related traumatic stress symptoms, little is still known about the impact of life-threat versus medical interventions, much less the impact of any specific illness. This lack of knowledge is partly because it is a new area of research, but it is also because this is a difficult subject to study. There are several reasons why it is so difficult. 1. The relatively small number of children with serious illnesses makes it difficult to mount an effective study at any single institution.
206
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
2. The need to account for the effects of the fluctuation of the illness itself as a determinant of outcome leads to a need for complicated designs and larger samples. 3. Development issues require that a small range of age be included in any given analysis. 4. Most medically ill children are never seen by psychiatry or psychology, because the need is not appreciated. There is a need to study and validate an accepted assessment measure that can be used in collaborative studies across multiple sites. In the meantime, a concerted educational effort that targets pediatricians and family medicine physicians is needed to disseminate and enhance knowledge and awareness of this disorder. This article is offered as a step in this direction.
Summary Posttraumatic stress symptoms have been reported in response to various serious medical illnesses in adults and children. Not surprisingly, posttraumatic stress is probably more common in response to acute, life-threatening, events that are related to the illness. Emerging data suggest that children often experience life-saving medical procedures as traumatic, which puts caretakers and medical personnel in the role of perpetrators for the children. Trauma symptoms are also reported as common and severe in caregivers. Both of these issues have been previously poorly understood and should be addressed in assessment and treatment. As with other traumatic events, developmental considerations, the nature and severity of the event itself, social supports, and premorbid exposure to negative life events are also important issues to consider in developing appropriate interventions. The importance of developing prevention and treatment for PTSD in medically ill children and adults includes increased morbidity and mortality (eg, nonadherence to medications) and psychiatric sequelae and decreased quality of life. Obstacles to systematic study of a psychiatric intervention for this group include difficulties assessing multidrug regimens and cognitive treatment effects in this group. The relative stability of social supports and the potential use of preventive measures make this an attractive population for intervention. Clinicians and researchers are encouraged to work together to develop and use uniform screening and assessment methods that will help to identify cases and facilitate the multicenter trials that are vital to increasing knowledge in this patient population.
References [1] American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4th edition. Washington, DC: American Psychiatric Association; 1994.
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
207
[2] Alter CL, Pelcovitz D, Axelrod A, Goldenberg B, Harris H, Meyers B, et al. Identification of PTSD in cancer survivors. Psychosomatics 1996;37:137 – 43. [3] American Psychiatric Association. Diagnostic and statistical manual of mental disorders, text revision. 4th edition. Washington, DC: American Psychiatric Association; 2000. [4] Laor N, Wolmer L, Mayes LC, Gershon A, Weizman R, Cohen DJ. Israeli preschool children under Scuds: a 30-month follow-up. J Am Acad Child Adolesc Psychiatry 1997;36:349 – 56. [5] Laor N, Wolmer L, Cohen DJ. Mothers’ functioning and children’s symptoms 5 years after a SCUD missile attack. Am J Psychiatry 2001;158:1020 – 6. [6] Widows MR, Jacobsen PB, Fields KK. Relation of psychological vulnerability factors to posttraumatic stress disorder symptomatology in bone marrow transplant recipients. Psychosom Med 2000;62:873 – 82. [7] Heiney SP, Neuberg RW, Myers D, Bergman LH. The aftermath of bone marrow transplant for parents of pediatric patients: a post-traumatic stress disorder. Oncol Nurs Forum 1994;21: 843 – 7. [8] Kazak AE, Stuber ML, Barakat LP, Meeske K, Guthrie D, Meadows AT. Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers. J Am Acad Child Adolesc Psychiatry 1998;37:823 – 31. [9] Pelcovitz D, Goldenberg B, Kaplan S, Weinblatt M, Mandel F, Meyers B, et al. Posttraumatic stress disorder in mothers of pediatric cancer survivors. Psychosomatics 1996;37:116 – 26. [10] Stuber ML. Psychiatric sequelae in seriously ill children and their families. Psychiatr Clin N Am 1996;19:481 – 93. [11] Stuber ML, Nader K, Yasuda P, Pynoos RS, Cohen S. Stress responses after pediatric bone marrow transplantation: preliminary results of a prospective longitudinal study. J Am Acad Child Adolesc Psychiatry 1991;30:952 – 7. [12] Saxe G, Stoddard F, Courtney D, Cunningham K, Chawla N, Sheridan R, et al. Relationship between acute morphine and the course of PTSD in children with burns. J Am Acad Child Adolesc Psychiatry 2001;40:915 – 21. [13] Stoddard F, Saxe G. Ten-year research review of physical injuries. J Am Acad Child Adolesc Psychiatry 2001;40(10):1128 – 45. [14] Andrykowski MA, Cordova MJ. Factors associated with PTSD symptoms following treatment for breast cancer: test of the Andersen model. J Trauma Stress 1998;11:189 – 203. [15] Andrykowski MA, Cordova MJ, McGrath PC, Sloan DA, Kenady DE. Stability and change in posttraumatic stress disorder symptoms following breast cancer treatment: a 1-year follow-up. Psychooncology 2000;9:69 – 78. [16] Andrykowski MA, Cordova MJ, Studts JL, Miller TW. Posttraumatic stress disorder after treatment for breast cancer: prevalence of diagnosis and use of the PTSD Checklist-Civilian Version (PCL-C) as a screening instrument. J Consult Clin Psychol 1998;66:586 – 90. [17] Cordova MJ, Andrykowski MA, Kenady DE, McGrath PC, Sloan DA, Redd WH. Frequency and correlates of posttraumatic-stress-disorder-like symptoms after treatment for breast cancer. J Consult Clin Psychol 1995;63:981 – 6. [18] Cordova MJ, Studts JL, Hann DM, Jacobsen PB, Andrykowski MA. Symptom structure of PTSD following breast cancer. J Trauma Stress 2000;13:301 – 19. [19] Green BL, Rowland JH, Krupnick JL, Epstein SA, Stockton P, Stern NM, et al. Prevalence of posttraumatic stress disorder in women with breast cancer. Psychosomatics 1998;39:102 – 11. [20] Hampton MR, Frombach I. Women’s experience of traumatic stress in cancer treatment. Health Care Women Int 2000;21:67 – 76. [21] Jacobsen PB, Sadler IJ, Booth-Jones M, et al. Predictors of posttraumatic stress disorder symptomatology following bone marrow transplantation for cancer. J Consult Clin Psychol 2002;70: 235 – 40. [22] Jacobsen PB, Widows MR, Hann DM, Andrykowski MA, Kronish LE, Fields KK. Posttraumatic stress disorder symptoms after bone marrow transplantation for breast cancer. Psychosom Med 1998;60:366 – 71. [23] Malt UF, Tjemsland L. PTSD in women with breast cancer. Psychosomatics 1999;40:89.
208
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
[24] Mundy EA, Blanchard EB, Cirenza E, Gargiulo J, Maloy B, Blanchard CG. Posttraumatic stress disorder in breast cancer patients following autologous bone marrow transplantation or conventional cancer treatments. Behav Res Ther 2000;38:1015 – 27. [25] Neel ML. Posttraumatic stress symptomatology and cancer. Int J Emerg Ment Health 2000; 2:85 – 94. [26] Pitman RK, Lanes DM, Williston SK, Guillaume JL, Metzger LJ, Gehr GM, et al. Psychophysiologic assessment of posttraumatic stress disorder in breast cancer patients. Psychosomatics 2001;42:133 – 40. [27] Smith MY, Redd W, DuHamel K, Vickberg SJ, Ricketts P. Validation of the PTSD Checklist-Civilian Version in survivors of bone marrow transplantation. J Trauma Stress 1999;12: 485 – 99. [28] Smith MY, Redd WH, Peyser C, Vogl D. Post-traumatic stress disorder in cancer: a review. Psychooncology 1999;8:521 – 37. [29] Stukas Jr AA, Dew MA, Switzer GE, DiMartini A, Kormos RL, Griffith BP. PTSD in heart transplant recipients and their primary family caregivers. Psychosomatics 1999;40:212 – 21. [30] Walker AM, Harris G, Baker A, Kelly D, Houghton J. Post-traumatic stress responses following liver transplantation in older children. J Child Psychol Psychiatry 1999;40:363 – 74. [31] Falger PR, Op den Velde W, Hovens JE, Schouten EG, De Groen JH, Van Duijn H. Current posttraumatic stress disorder and cardiovascular disease risk factors in Dutch Resistance veterans from World War II. Psychother Psychosom 1992;57:164 – 71. [32] Alonzo AA. Acute myocardial infarction and posttraumatic stress disorder: the consequences of cumulative adversity. J Cardiovasc Nurs 1999;13:33 – 45. [33] Bennett P, Conway M, Clatworthy J, Brooke S, Owen R. Predicting post-traumatic symptoms in cardiac patients. Heart Lung 2001;30:458 – 65. [34] Doerfler LA, Pbert L, DeCosimo D. Symptoms of posttraumatic stress disorder following myocardial infarction and coronary artery bypass surgery. Gen Hosp Psychiatry 1994;16:193 – 9. [35] Kutz I, Garb R, David D. Post-traumatic stress disorder following myocardial infarction. Gen Hosp Psychiatry 1988;10:169 – 76. [36] Kutz I, Shabtai H, Solomon Z, Neumann M, David D. Post-traumatic stress disorder in myocardial infarction patients: prevalence study. Isr J Psychiatry Relat Sci 1994;31:48 – 56. [37] Shemesh E, Rudnick A, Kaluski E, et al. A prospective study of posttraumatic stress symptoms and nonadherence in survivors of a myocardial infarction (MI). Gen Hosp Psychiatry 2001; 23:215 – 22. [38] Dew MA, Kormos RL, Roth LH, Murali S, DiMartini A, Griffith BP. Early post-transplant medical compliance and mental health predict physical morbidity and mortality one to three years after heart transplantation. J Heart Lung Transplant 1999;18:549 – 62. [39] Dew MA, Roth LH, Schulberg HC, Simmons RG, Kormos RL, Trzepacz PT, et al. Prevalence and predictors of depression and anxiety-related disorders during the year after heart transplantation. Gen Hosp Psychiatry 1996;18(6 Suppl):48S – 61S. [40] Barakat LP, Kazak AE, Meadows AT, Casey R, Meeske K, Stuber ML. Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children. J Pediatr Psychol 1997;22:843 – 59. [41] Kazak AE, Barakat LP, Meeske K, Christakis D, Meadows AT, Casey R, et al. Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers. J Consult Clin Psychol 1997;65:120 – 9. [42] Landolt MA, Boehler U, Schwager C, Schallberger U, Nuessli R. Post-traumatic stress disorder in paediatric patients and their parents: an exploratory study. J Paediatr Child Health 1998; 34:539 – 43. [43] Manne SL, Du Hamel K, Gallelli K, Sorgen K, Redd WH. Posttraumatic stress disorder among mothers of pediatric cancer survivors: diagnosis, comorbidity, and utility of the PTSD checklist as a screening instrument. J Pediatr Psychol 1998;23:357 – 66. [44] Stuber ML. Psychiatric aspects of organ transplantation in children and adolescents. Psychosomatics 1993;34:379 – 87.
M.L. Stuber et al / Child Adolesc Psychiatric Clin N Am 12 (2003) 195–209
209
[45] Stuber ML, Kazak AE, Meeske K, Barakat L. Is posttraumatic stress a viable model for understanding responses to childhood cancer? Child Adolesc Psychiatr Clin N Am 1998;7:169 – 82. [46] Young GS, Mintzer LL, Seacour D, Castan˜eda M, Mesrkhan V, Stuber ML. Symptoms of PTSD in parents of transplant recipients: incidence, severity, and related factors. Pediatrics, in press. [47] Stuber ML, Nader KO, Houskamp BM, Pynoos RS. Appraisal of life threat and acute trauma responses in pediatric bone marrow transplant patients. J Trauma Stress 1996;9:673 – 86. [48] Pelcovitz D, Libov BG, Mandel F, Kaplan S, Weinblatt M, Septimus A. Posttraumatic stress disorder and family functioning in adolescent cancer. J Trauma Stress 1998;11:205 – 21. [49] Butler RW, Rizzi LP, Handwerger BA. Brief report: the assessment of posttraumatic stress disorder in pediatric cancer patients and survivors. J Pediatr Psychol 1996;21:499 – 504. [50] Shemesh E, Lurie S, Stuber ML, Emre S, Patel Y, Vohra P, et al. A pilot study of posttraumatic stress and nonadherence in pediatric liver transplant recipients. Pediatrics 2000;105:E29. [51] Mintzer LL. Posttraumatic stress in adolescent transplant recipients. Dissertation in partial completion of PhD at Northwestern University, 2001. [52] Stuber ML, Housekamp B. Stress and pediatric medical technology. In: Pfeffer CR, editor. Severe stress and mental disturbance in children. p. 249 – 77. [53] Stuber ML, Kazak AE, Meeske K, Barakat L, Guthrie D, Garnier H, et al. Predictors of posttraumatic stress symptoms in childhood cancer survivors. Pediatrics 1997;100:958 – 64. [54] Hobbie WL, Stuber M, Meeske K, Wissler K, Rourke MT, Ruccione K, et al. Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol 2000;18:4060 – 6. [55] Rourke MT, Stuber ML, Hobbie WL, Kazak AE. Posttraumatic stress disorder: understanding the psychosocial impact of surviving childhood cancer into young adulthood. J Pediatr Oncol Nurs 1999;16:126 – 35. [56] Stuber ML, Christakis DA, Houskamp B, Kazak AE. Posttrauma symptoms in childhood leukemia survivors and their parents. Psychosomatics 1996;37:254 – 61. [57] Wolmer L, Laor N, Gershon A, Mayes LC, Cohen DJ. The mother-child dyad facing trauma: a developmental outlook. J Nerv Ment Dis 2000;188:409 – 15. [58] Yehuda R. Risk factors for posttraumatic stress disorder. Washington, DC: American Psychiatric Press; 1999. [59] Dew MA, Kormos RL, DiMartini AF, Switzer GE, Schulberg HC, Roth LH, et al. Prevalence and risk of depression and anxiety-related disorders during the first three years after heart transplantation. Psychosomatics 2001;42:300 – 13. [60] Kelly B, Raphael B, Judd F, Perdices M, Kernutt G, Burnett P, et al. Posttraumatic stress disorder in response to HIV infection. Gen Hosp Psychiatry 1998;20:345 – 52. [61] Shemesh E, Bartell A, Newcorn J. Assessment and treatment of depressive disorders in medically ill children. Current Psychiatry Reports (Current Sciences) 2002;4:88 – 92. [62] Glover DA, Poland RE. Urinary cortisol and catecholamines in mothers of child cancer survivors with and without PTSD. Psychoneuroendocrinology, in press. [63] Erickson SJ, Steiner H. Trauma and personality correlates in long-term pediatric cancer survivors. Child Psychiatry Hum Dev 2001;31:195 – 213. [64] Erickson SJ, Steiner H. Trauma spectrum adaptation: somatic symptoms in long-term pediatric cancer survivors. Psychosomatics 2000;41:339 – 46. [65] Meeske KA, Ruccione K, Globe DR, Stuber ML. Posttraumatic stress, quality of life, and psychological distress in young adult survivors of childhood cancer. Oncol Nurs Forum 2001;28:481 – 9. [66] Skotzko CE, Stowe JA, Wright C, Kendall K, Dew MA. Approaching a consensus: psychosocial support services for solid organ transplantation programs. Progress in Transplantation 2001; 11:163 – 8.