Posttraumatic Stress Symptoms During Treatment in Parents of Children With Cancer
http://www.100md.com
《临床肿瘤学》
the Children's Hospital of Philadelphia and University of Pennsylvania, Philadelphia, PA
ABSTRACT
PURPOSE: The conceptualization of childhood cancer and its treatment as traumatic has gained increasing support in the growing literature on medically related posttraumatic stress. Posttraumatic stress symptoms (PTSS) such as intrusive thoughts, physiologic arousal, and avoidance have been documented in mothers and fathers of childhood cancer survivors. In this study we investigated the presence of PTSS in parents of children currently in treatment and their association with treatment intensity and length of time since diagnosis.
METHODS: Mothers (N = 119) and fathers (N = 52) of children currently in treatment for a childhood malignancy completed questionnaire measures of PTSS. Outcomes on these measures were compared with a sample of parents of childhood cancer survivors from our hospital. Oncologist ratings of treatment intensity were obtained based on diagnosis, treatment modalities, and protocol number.
RESULTS: All but one parent reported PTSS. Mean scores indicated moderate PTSS for both mothers and fathers. In families with two participating parents, nearly 80% had at least one parent with moderate-to-severe PTSS. There were minimal associations between PTSS and length of time since diagnosis.
CONCLUSION: PTSS are common among parents of children currently undergoing cancer treatment. Trauma-informed psychosocial interventions can be used to help patients and families, including normalizing the experience as potentially traumatic and using evidence-based interventions that are emerging to facilitate long-term well-being.
INTRODUCTION
To offer optimal support to families of children with cancer, a more focused understanding of the nature of parental distress is necessary. The literature on parental adjustment suggests general and understandable elevations in anxiety and depression shortly after diagnosis,1-5 with decreasing acuity and intensity of distress and increasing adjustment over the first year after diagnosis.4,6,7 However, anxiety and depression do not capture all aspects of cancer-related distress.
Over the past decade, increasing support has amassed for understanding the diagnosis and treatment of cancer in one's child as psychologically traumatic events for parents. Symptoms of posttraumatic stress disorder8 (PTSD) such as reexperiencing distressing events, physiologic arousal, and efforts to avoid cancer-related experiences have been documented in parents of children who have completed their cancer treatment.9-15 In a recent study of 150 families of adolescent childhood cancer survivors 1 to 10 years from completion of cancer therapy,11 nearly all the families (99%) had at least one parent meet PTSD Diagnostic and Statistical Manual, 4th Edition8 symptom criteria for reexperiencing, and 20% of the families had at least one parent with current PTSD.
Subclinical posttraumatic stress symptoms (PTSS) are not synonymous with PTSD, although they are closely related. PTSS are broader and more normative than the psychiatric diagnosis of PTSD and may be defined as "a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures and invasive or frightening treatment experiences."16 The persistence of PTSS over time and the potential for ongoing disturbances in functioning or in family development related to PTSS have been among the most striking findings across a variety of pediatric illnesses and injuries.17,18
Within pediatric cancer populations, PTSS are commonly experienced by parents of children who have survived treatment; PTSS include intrusive thoughts, physiologic arousal, and avoidance of treatment-related events. During treatment, parents are exposed to multiple potentially traumatic events that may include learning of the diagnosis, seeing their child in pain, emergency hospitalizations, adverse effects of treatment, and deaths of other patients.19 This series of events makes it difficult to pinpoint a discrete traumatic stressor; however, it seems reasonable that PTSS may emerge at some point during treatment for cancer, as has been suggested in one pilot study.20 Furthermore, pinpointing a discrete stressor during cancer treatment may be less critical clinically than uncovering a traumatic reaction of parents during treatment.21 Trauma-related symptoms of parents such as those listed above may complicate the delivery of medical care by leading to missed appointments and/or difficulty attending to and understanding information presented during visits.
Medically relevant variables such as the length of time since diagnosis and the intensity of the cancer treatment may be related to parental PTSS. For example, PTSS might decrease over time, similar to anxiety, in a natural course of adjustment to the cancer. Also, more intense treatment regimens, with a greater likelihood of immediate adverse effects, might be more likely to foster PTSS during the treatment period.
The primary goal of this article is to report PTSS in mothers and fathers of children in current treatment for a pediatric malignancy. Data from a sample of mothers and fathers of patients from our hospital 1 to 10 years from completion of their cancer treatment are used as a referent group to put the rates of PTSS in our current sample into context.11 The associations between treatment intensity and length of time since diagnosis with PTSS are examined also.
METHODS
Participants
Mothers (N = 119) and fathers (N = 52) from 125 families of children on treatment for a pediatric malignancy completed this study. Mean age for mothers was 38.1 years and for fathers 41.7 years. The majority of the parents completed some postsecondary education (mothers, 95 [79.80%]; fathers, 48 [85.72%]). Annual household income was between $50,000 and $99,999 for 41% of the families; families with incomes below $50,000 comprised 39% of the sample. Of the patients, 70 (56.0%) were male and 108 (86.4%) were white. Their ages ranged from 10 months to 20 years (mean, 8.4 years; standard deviation [SD], 5.3 years). Cancer diagnoses were leukemias (67 [53.6%]), lymphomas (11 [8.8%]), solid tumors (33 [26.4%]), and brain tumors (14 [11.2%]). The length of time since diagnosis ranged from 2.5 to 44.3 months (mean, 15.7; SD, 10.3 months).
Measures
Post-traumatic stress disorder reaction index. The Posttraumatic Stress Disorder Reaction Index22 (PTSD-RI) is a 20-item self-report questionnaire that assesses the severity of PTSS. Each item is a PTSS rated for frequency of occurrence on a five-point scale. PTSD-RI scores are associated with clinical diagnoses of PTSD and provide categorizations of severity of PTSS (12-24, mild; 25-39, moderate; 40+, severe). Internal consistencies have been reported to be 0.89 for parents of childhood cancer survivors11 and were 0.91 (mothers) and 0.92 (fathers) in this sample.
Impact of event scale-revised. The Impact of Event Scale-Revised23 (IES-R) is a 22-item questionnaire that assesses psychological symptoms that occurred within the past week associated with a specific traumatic event. Based on our previous research and because all families experienced it, the child's diagnosis with cancer was selected as the traumatic event.19 Each item presents a symptom, and participants use a weighted four-point scale to rate the frequency with which they experienced that symptom during the past week. Three subscale scores, intrusive thoughts, avoidance, and arousal, are obtained. Cronbach's values range from 0.91 to 0.95 and were 0.92 (mothers) and 0.93 (fathers) in this sample.
Intensity of treatment rating scale. A four-point rating scale was used to rate the intensity of the cancer treatment protocols based on Children's Oncology Group protocol number, medications, and treatment modalities.11,24,25 Level 1 (N = 8) included minimally intensive treatments (eg, surgery only, < 6 months of chemotherapy with one or two drugs, unilateral enucleation). Level 2 (N = 41) represented moderately intensive treatments (eg, 6 months of chemotherapy with three chemotherapeutic agents plus limited-dose and single-field radiation, craniotomy). Level 3 (N = 49) included more intensive regimens such as those including higher doses or larger volumes of radiation, some metastatic tumors, and brain tumor protocols with two or more modalities. Level IV was the most intensive (N = 25) and in this study represented protocols involving bone marrow transplantation or acute myeloid leukemia therapy. Two oncologists (A.R. and Anna T. Meadows, MD), blind to the child's identity, independently rated the intensity of each child's treatment based on protocol numbers, chemotherapies, and other treatment modalities. Inter-rater reliability for the Intensity of Treatment Rating Scale (ITRS) was excellent ( = 0.80). A third oncologist's (Anna T. Meadows, MD) rating was used to determine intensity for cases in which the first two raters were discrepant.
Procedure
Families of children who had been diagnosed with a pediatric malignancy and who were in active treatment at the Children's Hospital of Philadelphia Division of Oncology were identified based on tumor registry data for this institutional review board–approved study. Exclusion criteria were a diagnosis of a brain tumor treated only with surgery or non–English-speaking parents. Patients with relapsed disease were also excluded, because their treatment course would have resulted in more potentially traumatic events. Letters from key project personnel explaining the purpose and procedure of the study were sent to eligible families. Follow-up telephone calls were made to determine interest and arrange for data collection. Because diagnostic criteria for PTSD require that individuals be at least 1 month past the traumatic event,8 we ensured that all families were at least 1 month from diagnosis on entry into the study. Participating parents met a member of the research team in the oncology inpatient and/or outpatient facilities, provided written informed consent, and completed the study. Families were provided $25.00 to cover expenses related to study participation.
Subsequent to exclusions of families based on tumor registry data, there were 215 presumed-eligible families. Of these, we were unable to make direct contact with 56 (26.1%) by letters and telephone calls. Of the 159 contacted families, 23 (14.5%) refused, and 11 (6.9%) agreed to participate but did not keep their appointment, rendering a participation rate of 78.6%. Participant and nonparticipant families did not differ with regard to child's age, cancer diagnosis, length of time since diagnosis, or intensity of treatment. Participant families were less ethnically diverse than nonparticipant families (2 [1, N = 158] = 6.97; P = .01).
Statistical Analysis
The outcome measures were primarily normally distributed. Both nonparametric and parametric analyses were calculated for the non-normal measures and because the pattern of results was similar across analyses; the more widely used and understood parametric statistics are reported. PTSS levels are reported separately for mothers and fathers by using means and SDs from the IES-R and PTSD-RI. Data from a sample of parents of childhood cancer survivors from our hospital11 were used to provide comparisons with an oncology sample. Average levels of PTSS in this on-treatment sample were compared to the referent group in terms of levels of PTSS by using multivariate analysis of variance (MANOVA) and followed by univariate analyses. For families in the sample in which both parents participated (N = 48), we explored the number of families in which (1) either parent reported moderate-to-severe PTSS, (2) both parents reported severe PTSS, and (3) both parents reported mild symptoms. MANOVAs were also used to evaluate the relationship between treatment intensity and PTSS, again conducted separately for mothers and fathers. Finally, simple correlations tested the association between PTSS and length of time since diagnosis.
RESULTS
The mean scores for mothers (mean, 31.1; SD, 11.5) and fathers (mean, 28.0; SD, 9.5) were within the range of moderate PTSS on the PTSD-RI (Table 1 ). The number and percent of mothers and fathers falling into mild, moderate, and severe PTSS categories on the PTSD-RI show that all but one parent reported symptoms consistent with at least mild PTSS. Approximately 68% of mothers and 57% of fathers reported PTSS within the moderate-to-severe range on the PTSD-RI. With respect to whether PTSS affects one or both parents (in two-parent families), 38 (79.2%) of the families in our sample in which two parents participated had at least one parent with moderate-to-severe PTSS. It was quite rare for both parents to report severe symptoms (N = 3 [6.3%]) and untypical for both parents to report mild PTSS (N = 7 [14.5%]).
MANOVAs, conducted separately for mothers and fathers, were used to compare the parents in this sample with a referent group of mothers and fathers of survivors11 on PTSS (three IES-R subscale scores, PTSD-RI). The current sample reported significantly higher levels of distress (mothers: Wilks' = 0.88, F4,237 = 8.44, P < .001; fathers: Wilks' = 0.82, F4,147 = 8.10, P < .001). Follow-up univariate analyses showed that mothers of children currently receiving cancer treatment reported more intrusive thoughts, avoidance, and arousal symptoms in the past 7 days and more overall PTSS than the mothers in the survivor sample (F1,240 > 10.9, P .001). Fathers in the on-treatment group had more recent symptoms of intrusive thoughts and had arousal and more overall PTSS than the off-treatment sample (F1,150 > 7.5, P .007); however, recent symptoms of avoidance were approximately equivalent in the two groups (F1,150 = 0.73, P = .40).
Using MANOVA, with treatment intensity as the between-groups variable and PTSS (PTSD-RI and IES-R total scores) as the dependent variable, there was no significant relationship between treatment intensity and distress for mothers (Wilks' = 0.91, F6,202 = 1.59, P = .15) or fathers (Wilks' = 0.89, F6,94 = 0.92, P = .48). The length of time since diagnosis showed a significant but low-magnitude negative association with PTSS for the PTSD-RI for mothers (r = –0.23, P = .02) and a similar magnitude but nonsignificant trend for fathers (r = –0.25, P = .07). Other correlations between PTSS (IES-R) and time since diagnosis were not statistically significant for either parent (r < –0.10, P > .49).
DISCUSSION
PTSS are common in both mothers and fathers of children in treatment for pediatric malignancies and higher than that reported in a sample of parents of survivors of childhood cancer.11 In the present sample all but one parent endorsed PTSS, with two thirds of mothers and one half of the fathers reporting PTSS in the moderate-to-severe range. Four of five families with two parents participating in the study had at least one parent report PTSS in the moderate-to-severe range. This is important clinical information and verifies the relevance of PTSS during treatment and shows PTSS to be more prevalent in this population compared to mothers and fathers of long-term survivors of childhood cancer.11,20
Whereas previous literature on parent adjustment to having an ill child has looked primarily at anxiety and/or depression, the findings related to these outcomes have been variable and of somewhat limited utility. That is, anxiety is elevated at diagnosis but declines for most parents as treatment is initiated and the family accommodates to the new "routines" in their lives.7 Depression, although seemingly understandable, has not been reported as a consistent or clinically significant outcome for parents.7 Alternatively, PTSS such as intrusive thoughts about the child's diagnosis or other particularly salient moments during the child's treatment (eg, admission to the intensive care unit, trips to the emergency room, death of a roommate), physiologic arousal at reminders of cancer, and thoughts about avoiding cancer and its treatment are closely linked to clinical care and continue to be common among parents for many years after treatment ends.11
These data raise complex issues regarding the meaning of elevated PTSS during treatment. Given the high rate of prevalence of PTSS, for example, it would be inappropriate to assume that PTSS indicate psychiatric impairment. They are, for many, part of the process of responding and reacting to one's circumstances and may be adaptive in certain ways. A limitation of this work is that the assessment of traumatic stress while the child is undergoing cancer treatment is complicated by the likelihood of retraumatization, making it difficult to identify a discrete traumatic event. Indeed, the number of potentially traumatic events will differ among parents, as will the interpretation of these events (eg, whether they are experienced as traumatic). However, regardless of the specific event to which parents are reacting, they do seem to react with PTSS during treatment. Furthermore, as the presence of potentially traumatic events subsides, the persistence of PTSS is more concerning. Additional research, including more specific assessments of PTSD, identification of risk factors, and prospective evaluations of traumatic responses, will be helpful in addressing some of these limitations.
A traumatic stress perspective on cancer treatment affords multidisciplinary treatment teams new options in terms of providing trauma-informed medical care and appropriate psychosocial intervention as needed for patients and families. Experiences that are relatively commonplace in highly technological, high-acuity medical settings are frequently experienced as traumatic by parents. Although they may be considered "routine" by medical staff, it is important that health care providers remain sensitized to patient and parent experiences of these events. Recent work from pediatric emergency medicine indicates the need for training health care professionals about PTSS; these symptoms were not recognized as PTSS, and medical staff were largely unaware of published screeners that could assist them in understanding the responses of their patients.26 Trauma-informed care can be integrated into medical care quite readily, including, for example, use of toolkits for this purpose, including the D-E-F protocol, which prompts healthcare professionals to assess distress, emotional support, and family needs specific to traumatic stress.27
Furthermore, knowledge and attention to PTSS can lead to more appropriate multidisciplinary care of the patient and family. For example, families can be reassured that their PTSS during treatment are commonplace, be alerted to other potential PTSS reactions, and be guided as to when to seek help (ie, if symptoms interfere with functioning or persist long-term). In addition, psychosocial intervention can be targeted to those parents most at risk, including mothers of children undergoing bone marrow transplantations or other intense, invasive, and/or potentially frightening experiences. Finally, effective treatments for PTSS are emerging for survivors of childhood cancer and their parents. Based on integrations of cognitive behavioral and family therapy approaches, it may be possible to help parents adjust and cope more adaptively to the traumatic aspects of their child's treatment.28,29 Other empirically supported treatments such as maternal problem solving may also be used to reduce the distress experienced by parents during treatment.30,31 Finally, intervening during treatment with both mothers and fathers may help to prevent long-term psychological difficulties for the family. Prospective studies indicate that those parents with the highest levels of distress during treatment continue to persist with long-term distress.32,33 Early identification of at-risk families may promote the development and evaluation of effective brief treatments.25 By helping caregivers address their own psychological well-being, we may be best assuring that the psychological needs of the patients are also met.
As more children survive pediatric malignancies, the long-term well-being of the patient and family emerge as increasingly important. The medical regimens that have proven to be highly effective in successful cancer treatment have unintended consequences, one of which may be the potential for ongoing PTSS in the family. These symptoms, while distressing, may be addressed systematically in routine clinical care and through the inclusion of evidence-based interventions for parents and families during treatment for childhood malignancies.
Authors' Disclosures of Potential Conflicts of Interest
The authors indicated no potential conflicts of interest.
Acknowledgment
The Intensity of Treatment Rating Scale was developed in conjunction with Anna T. Meadows, MD, and Wendy Hobbie, MSN, CRNP, whose contribution to this work we gratefully acknowledge. We also appreciate the assistance of Ann Leahey, MD, and Dr Meadows in completing ratings of treatment intensity.
NOTES
Supported by a Grant from the National Cancer Institute (CA88828).
REFERENCES
Barrera M, D'Agostino NM, Gibson J, et al: Predictors and mediators of psychological adjustment in mothers of children newly diagnosed with cancer. Psychooncology 13:630-41, 2004
Hoekstra-Weebers J, Jaspars J, Kamps WA, et al: Gender differences in psychological adaptation and coping in parents of pediatric cancer patients. Psychooncology 7:26-36, 1998
Manne SL, Miller DL, Meyers P, et al: Depressive symptoms among parents of newly diagnosed children with cancer: A 6-month follow-up study. Child Health Care 25:191-209, 1996
Sawyer M, Antoniou G, Toogood I, et al: Childhood cancer: A two-year prospective study of the psychological adjustment of children and parents. J Am Acad Child Adolesc Psychiatry 36:1736-1743, 1997
Sloper P: Predictors of distress in parents of children with cancer: A prospective study. J Pediatr Psychol 25:79-91, 2000
Fife B, Norton J, Groom G: The family's adaptation to childhood leukemia. Soc Sci Med 24:159-168, 1987
Steele R, Long A, Reddy K, et al: Changes in maternal distress and child-rearing strategies across treatment for pediatric cancer. J Pediatr Psychol 28:447-452, 2004
American Psychiatric Association.Diagnostic and Statistical Manual of the American Psychiatric Association (ed 4). Washington, DC, American Psychiatric Press, 1994
Barakat L, Kazak AE, Meadows A, et al: Families surviving childhood cancer: A comparison of posttraumatic stress symptoms with families of healthy children. J Pediatr Psychol 22:843-859, 1997
Brown R, Madan-Swain A, Lambert R: Posttraumatic stress symptoms in adolescent survivors of childhood cancer and their mothers. J Trauma Stress 16:309-318, 2003
Kazak A, Alderfer M, Rourke M, et al: Posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD) in families of adolescent childhood cancer survivors. J Pediatr Psychol 29:211-219, 2004
Kazak A, Barakat L, Meeske K, et al: Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers. J Consult Clin Psychol 65:120-129, 1997
Manne S, DuHamel K, Gallelli K, et al: Posttraumatic stress disorder among mothers of pediatric cancer survivors: Diagnosis, comorbidity, and utility of the PTSD checklists as a screening instrument. J Pediatr Psychol 23:357-366, 1998
Manne S, DuHamel K, Nereo N, et al: Predictors of PTSD in mothers of children undergoing bone marrow transplantation: The role of cognitive and social processes. J Pediatr Psychol 27:607-617, 2002
Manne S, DuHamel K, Ostroff J, et al: Anxiety, depressive, and posttraumatic stress disorders among mothers of pediatric hematopoietic stem cell transplantation. Pediatrics 113:1700-1708, 2004
National Child Traumatic Stress Network: Definition of medical traumatic stress. Presented at the Medical Traumatic Stress Working Group Meeting, Philadelphia, PA, September 16-17, 2003
Saxe G, Vanderbilt D, Zuckerman B: Traumatic stress in injured and ill children. PTSD Res Q 14:1-7, 2003
Stuber M, Shemesh E, Saxe G: Posttraumatic stress responses in children with life-threatening illness. Child Adolesc Psychiatr Clin N Am 12:195-209, 2003
Kazak A, Barakat L, Alderfer M, et al: Posttraumatic stress in survivors of childhood cancer and mothers: Development and validation of the Impact of Traumatic Stressors Interview Schedule (ITSIS). J Clin Psychol Med Settings 8:307-323, 2001
Santacroce S: Uncertainty, anxiety, and symptoms of posttraumatic stress in parents of children recently diagnosed with cancer. J Pediatr Oncol Nurs 19:104-111, 2002
Kazak A, Kassam-Adams N, Schneider S, et al: An integrative model of pediatric medical traumatic stress. J Pediatr Psychol (in press)
Pynoos RS, Frederick C, Nader K, et al: Life threat and posttraumatic stress in school-age children. Arch Gen Psychiatry 44:1057-1063, 1987
Weiss DS, Marmar CR: The Impact of Event Scale-Revised, in JP Wilson, TM Keane (eds): Assessing Psychological Trauma and PTSD. New York, NY, Guilford Press, 1997, pp 399-411
Hobbie W, Stuber M, Meeske K, et al: Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol 18:4060-4066, 2000
Kazak A, Cant MC, Jensen M, et al: Identifying psychosocial risk indicative of subsequent resource utilization in families of newly diagnosed pediatric oncology patients. J Clin Oncol 21:3220-3225, 2003
Ziegler M, Greenwald M, DeGuzman M, et al: Posttraumatic stress responses in children: Awareness and practice among a sample of pediatric emergency care providers. Pediatrics 115:1261-1267, 2005
National Child Traumatic Stress Network. Pediatric medical traumatic stress toolkit. Available at www.NCTSNet.org, 2004
Kazak A, Alderfer M, Streisand R, et al: Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: A randomized clinical trial. J Fam Psychol 18:493-504, 2004
Kazak A, Simms S, Alderfer M, et al: Feasibility and preliminary outcomes from a pilot study of a brief psychological intervention for families of children newly diagnosed with cancer. J Pediatr Psychol (in press)
Sahler OJ, Varni J, Fairclough D, et al: Problem-solving skills training for mothers of children with newly diagnosed cancer: A randomized trial. J Dev Behav Pediatr 23:77-86, 2002
Sahler OJ, Fairclough D, Phipps S, et al: Using problem-solving skills to reduce negative affectivity in mothers of children with newly diagnosed cancer: Report of a multi-site randomized trial. J Consult Clin Psychol 73:272-283, 2005
Best M, Streisand R, Catania L, et al: Parental distress during pediatric leukemia and parental posttraumatic stress symptoms after treatment ends. J Pediatr Psychol 26:299-307, 2001
Kazak A, Barakat L: Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. J Pediatr Psychol 22:749-758, 1997(Anne E. Kazak, C. Alexand)
ABSTRACT
PURPOSE: The conceptualization of childhood cancer and its treatment as traumatic has gained increasing support in the growing literature on medically related posttraumatic stress. Posttraumatic stress symptoms (PTSS) such as intrusive thoughts, physiologic arousal, and avoidance have been documented in mothers and fathers of childhood cancer survivors. In this study we investigated the presence of PTSS in parents of children currently in treatment and their association with treatment intensity and length of time since diagnosis.
METHODS: Mothers (N = 119) and fathers (N = 52) of children currently in treatment for a childhood malignancy completed questionnaire measures of PTSS. Outcomes on these measures were compared with a sample of parents of childhood cancer survivors from our hospital. Oncologist ratings of treatment intensity were obtained based on diagnosis, treatment modalities, and protocol number.
RESULTS: All but one parent reported PTSS. Mean scores indicated moderate PTSS for both mothers and fathers. In families with two participating parents, nearly 80% had at least one parent with moderate-to-severe PTSS. There were minimal associations between PTSS and length of time since diagnosis.
CONCLUSION: PTSS are common among parents of children currently undergoing cancer treatment. Trauma-informed psychosocial interventions can be used to help patients and families, including normalizing the experience as potentially traumatic and using evidence-based interventions that are emerging to facilitate long-term well-being.
INTRODUCTION
To offer optimal support to families of children with cancer, a more focused understanding of the nature of parental distress is necessary. The literature on parental adjustment suggests general and understandable elevations in anxiety and depression shortly after diagnosis,1-5 with decreasing acuity and intensity of distress and increasing adjustment over the first year after diagnosis.4,6,7 However, anxiety and depression do not capture all aspects of cancer-related distress.
Over the past decade, increasing support has amassed for understanding the diagnosis and treatment of cancer in one's child as psychologically traumatic events for parents. Symptoms of posttraumatic stress disorder8 (PTSD) such as reexperiencing distressing events, physiologic arousal, and efforts to avoid cancer-related experiences have been documented in parents of children who have completed their cancer treatment.9-15 In a recent study of 150 families of adolescent childhood cancer survivors 1 to 10 years from completion of cancer therapy,11 nearly all the families (99%) had at least one parent meet PTSD Diagnostic and Statistical Manual, 4th Edition8 symptom criteria for reexperiencing, and 20% of the families had at least one parent with current PTSD.
Subclinical posttraumatic stress symptoms (PTSS) are not synonymous with PTSD, although they are closely related. PTSS are broader and more normative than the psychiatric diagnosis of PTSD and may be defined as "a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures and invasive or frightening treatment experiences."16 The persistence of PTSS over time and the potential for ongoing disturbances in functioning or in family development related to PTSS have been among the most striking findings across a variety of pediatric illnesses and injuries.17,18
Within pediatric cancer populations, PTSS are commonly experienced by parents of children who have survived treatment; PTSS include intrusive thoughts, physiologic arousal, and avoidance of treatment-related events. During treatment, parents are exposed to multiple potentially traumatic events that may include learning of the diagnosis, seeing their child in pain, emergency hospitalizations, adverse effects of treatment, and deaths of other patients.19 This series of events makes it difficult to pinpoint a discrete traumatic stressor; however, it seems reasonable that PTSS may emerge at some point during treatment for cancer, as has been suggested in one pilot study.20 Furthermore, pinpointing a discrete stressor during cancer treatment may be less critical clinically than uncovering a traumatic reaction of parents during treatment.21 Trauma-related symptoms of parents such as those listed above may complicate the delivery of medical care by leading to missed appointments and/or difficulty attending to and understanding information presented during visits.
Medically relevant variables such as the length of time since diagnosis and the intensity of the cancer treatment may be related to parental PTSS. For example, PTSS might decrease over time, similar to anxiety, in a natural course of adjustment to the cancer. Also, more intense treatment regimens, with a greater likelihood of immediate adverse effects, might be more likely to foster PTSS during the treatment period.
The primary goal of this article is to report PTSS in mothers and fathers of children in current treatment for a pediatric malignancy. Data from a sample of mothers and fathers of patients from our hospital 1 to 10 years from completion of their cancer treatment are used as a referent group to put the rates of PTSS in our current sample into context.11 The associations between treatment intensity and length of time since diagnosis with PTSS are examined also.
METHODS
Participants
Mothers (N = 119) and fathers (N = 52) from 125 families of children on treatment for a pediatric malignancy completed this study. Mean age for mothers was 38.1 years and for fathers 41.7 years. The majority of the parents completed some postsecondary education (mothers, 95 [79.80%]; fathers, 48 [85.72%]). Annual household income was between $50,000 and $99,999 for 41% of the families; families with incomes below $50,000 comprised 39% of the sample. Of the patients, 70 (56.0%) were male and 108 (86.4%) were white. Their ages ranged from 10 months to 20 years (mean, 8.4 years; standard deviation [SD], 5.3 years). Cancer diagnoses were leukemias (67 [53.6%]), lymphomas (11 [8.8%]), solid tumors (33 [26.4%]), and brain tumors (14 [11.2%]). The length of time since diagnosis ranged from 2.5 to 44.3 months (mean, 15.7; SD, 10.3 months).
Measures
Post-traumatic stress disorder reaction index. The Posttraumatic Stress Disorder Reaction Index22 (PTSD-RI) is a 20-item self-report questionnaire that assesses the severity of PTSS. Each item is a PTSS rated for frequency of occurrence on a five-point scale. PTSD-RI scores are associated with clinical diagnoses of PTSD and provide categorizations of severity of PTSS (12-24, mild; 25-39, moderate; 40+, severe). Internal consistencies have been reported to be 0.89 for parents of childhood cancer survivors11 and were 0.91 (mothers) and 0.92 (fathers) in this sample.
Impact of event scale-revised. The Impact of Event Scale-Revised23 (IES-R) is a 22-item questionnaire that assesses psychological symptoms that occurred within the past week associated with a specific traumatic event. Based on our previous research and because all families experienced it, the child's diagnosis with cancer was selected as the traumatic event.19 Each item presents a symptom, and participants use a weighted four-point scale to rate the frequency with which they experienced that symptom during the past week. Three subscale scores, intrusive thoughts, avoidance, and arousal, are obtained. Cronbach's values range from 0.91 to 0.95 and were 0.92 (mothers) and 0.93 (fathers) in this sample.
Intensity of treatment rating scale. A four-point rating scale was used to rate the intensity of the cancer treatment protocols based on Children's Oncology Group protocol number, medications, and treatment modalities.11,24,25 Level 1 (N = 8) included minimally intensive treatments (eg, surgery only, < 6 months of chemotherapy with one or two drugs, unilateral enucleation). Level 2 (N = 41) represented moderately intensive treatments (eg, 6 months of chemotherapy with three chemotherapeutic agents plus limited-dose and single-field radiation, craniotomy). Level 3 (N = 49) included more intensive regimens such as those including higher doses or larger volumes of radiation, some metastatic tumors, and brain tumor protocols with two or more modalities. Level IV was the most intensive (N = 25) and in this study represented protocols involving bone marrow transplantation or acute myeloid leukemia therapy. Two oncologists (A.R. and Anna T. Meadows, MD), blind to the child's identity, independently rated the intensity of each child's treatment based on protocol numbers, chemotherapies, and other treatment modalities. Inter-rater reliability for the Intensity of Treatment Rating Scale (ITRS) was excellent ( = 0.80). A third oncologist's (Anna T. Meadows, MD) rating was used to determine intensity for cases in which the first two raters were discrepant.
Procedure
Families of children who had been diagnosed with a pediatric malignancy and who were in active treatment at the Children's Hospital of Philadelphia Division of Oncology were identified based on tumor registry data for this institutional review board–approved study. Exclusion criteria were a diagnosis of a brain tumor treated only with surgery or non–English-speaking parents. Patients with relapsed disease were also excluded, because their treatment course would have resulted in more potentially traumatic events. Letters from key project personnel explaining the purpose and procedure of the study were sent to eligible families. Follow-up telephone calls were made to determine interest and arrange for data collection. Because diagnostic criteria for PTSD require that individuals be at least 1 month past the traumatic event,8 we ensured that all families were at least 1 month from diagnosis on entry into the study. Participating parents met a member of the research team in the oncology inpatient and/or outpatient facilities, provided written informed consent, and completed the study. Families were provided $25.00 to cover expenses related to study participation.
Subsequent to exclusions of families based on tumor registry data, there were 215 presumed-eligible families. Of these, we were unable to make direct contact with 56 (26.1%) by letters and telephone calls. Of the 159 contacted families, 23 (14.5%) refused, and 11 (6.9%) agreed to participate but did not keep their appointment, rendering a participation rate of 78.6%. Participant and nonparticipant families did not differ with regard to child's age, cancer diagnosis, length of time since diagnosis, or intensity of treatment. Participant families were less ethnically diverse than nonparticipant families (2 [1, N = 158] = 6.97; P = .01).
Statistical Analysis
The outcome measures were primarily normally distributed. Both nonparametric and parametric analyses were calculated for the non-normal measures and because the pattern of results was similar across analyses; the more widely used and understood parametric statistics are reported. PTSS levels are reported separately for mothers and fathers by using means and SDs from the IES-R and PTSD-RI. Data from a sample of parents of childhood cancer survivors from our hospital11 were used to provide comparisons with an oncology sample. Average levels of PTSS in this on-treatment sample were compared to the referent group in terms of levels of PTSS by using multivariate analysis of variance (MANOVA) and followed by univariate analyses. For families in the sample in which both parents participated (N = 48), we explored the number of families in which (1) either parent reported moderate-to-severe PTSS, (2) both parents reported severe PTSS, and (3) both parents reported mild symptoms. MANOVAs were also used to evaluate the relationship between treatment intensity and PTSS, again conducted separately for mothers and fathers. Finally, simple correlations tested the association between PTSS and length of time since diagnosis.
RESULTS
The mean scores for mothers (mean, 31.1; SD, 11.5) and fathers (mean, 28.0; SD, 9.5) were within the range of moderate PTSS on the PTSD-RI (Table 1 ). The number and percent of mothers and fathers falling into mild, moderate, and severe PTSS categories on the PTSD-RI show that all but one parent reported symptoms consistent with at least mild PTSS. Approximately 68% of mothers and 57% of fathers reported PTSS within the moderate-to-severe range on the PTSD-RI. With respect to whether PTSS affects one or both parents (in two-parent families), 38 (79.2%) of the families in our sample in which two parents participated had at least one parent with moderate-to-severe PTSS. It was quite rare for both parents to report severe symptoms (N = 3 [6.3%]) and untypical for both parents to report mild PTSS (N = 7 [14.5%]).
MANOVAs, conducted separately for mothers and fathers, were used to compare the parents in this sample with a referent group of mothers and fathers of survivors11 on PTSS (three IES-R subscale scores, PTSD-RI). The current sample reported significantly higher levels of distress (mothers: Wilks' = 0.88, F4,237 = 8.44, P < .001; fathers: Wilks' = 0.82, F4,147 = 8.10, P < .001). Follow-up univariate analyses showed that mothers of children currently receiving cancer treatment reported more intrusive thoughts, avoidance, and arousal symptoms in the past 7 days and more overall PTSS than the mothers in the survivor sample (F1,240 > 10.9, P .001). Fathers in the on-treatment group had more recent symptoms of intrusive thoughts and had arousal and more overall PTSS than the off-treatment sample (F1,150 > 7.5, P .007); however, recent symptoms of avoidance were approximately equivalent in the two groups (F1,150 = 0.73, P = .40).
Using MANOVA, with treatment intensity as the between-groups variable and PTSS (PTSD-RI and IES-R total scores) as the dependent variable, there was no significant relationship between treatment intensity and distress for mothers (Wilks' = 0.91, F6,202 = 1.59, P = .15) or fathers (Wilks' = 0.89, F6,94 = 0.92, P = .48). The length of time since diagnosis showed a significant but low-magnitude negative association with PTSS for the PTSD-RI for mothers (r = –0.23, P = .02) and a similar magnitude but nonsignificant trend for fathers (r = –0.25, P = .07). Other correlations between PTSS (IES-R) and time since diagnosis were not statistically significant for either parent (r < –0.10, P > .49).
DISCUSSION
PTSS are common in both mothers and fathers of children in treatment for pediatric malignancies and higher than that reported in a sample of parents of survivors of childhood cancer.11 In the present sample all but one parent endorsed PTSS, with two thirds of mothers and one half of the fathers reporting PTSS in the moderate-to-severe range. Four of five families with two parents participating in the study had at least one parent report PTSS in the moderate-to-severe range. This is important clinical information and verifies the relevance of PTSS during treatment and shows PTSS to be more prevalent in this population compared to mothers and fathers of long-term survivors of childhood cancer.11,20
Whereas previous literature on parent adjustment to having an ill child has looked primarily at anxiety and/or depression, the findings related to these outcomes have been variable and of somewhat limited utility. That is, anxiety is elevated at diagnosis but declines for most parents as treatment is initiated and the family accommodates to the new "routines" in their lives.7 Depression, although seemingly understandable, has not been reported as a consistent or clinically significant outcome for parents.7 Alternatively, PTSS such as intrusive thoughts about the child's diagnosis or other particularly salient moments during the child's treatment (eg, admission to the intensive care unit, trips to the emergency room, death of a roommate), physiologic arousal at reminders of cancer, and thoughts about avoiding cancer and its treatment are closely linked to clinical care and continue to be common among parents for many years after treatment ends.11
These data raise complex issues regarding the meaning of elevated PTSS during treatment. Given the high rate of prevalence of PTSS, for example, it would be inappropriate to assume that PTSS indicate psychiatric impairment. They are, for many, part of the process of responding and reacting to one's circumstances and may be adaptive in certain ways. A limitation of this work is that the assessment of traumatic stress while the child is undergoing cancer treatment is complicated by the likelihood of retraumatization, making it difficult to identify a discrete traumatic event. Indeed, the number of potentially traumatic events will differ among parents, as will the interpretation of these events (eg, whether they are experienced as traumatic). However, regardless of the specific event to which parents are reacting, they do seem to react with PTSS during treatment. Furthermore, as the presence of potentially traumatic events subsides, the persistence of PTSS is more concerning. Additional research, including more specific assessments of PTSD, identification of risk factors, and prospective evaluations of traumatic responses, will be helpful in addressing some of these limitations.
A traumatic stress perspective on cancer treatment affords multidisciplinary treatment teams new options in terms of providing trauma-informed medical care and appropriate psychosocial intervention as needed for patients and families. Experiences that are relatively commonplace in highly technological, high-acuity medical settings are frequently experienced as traumatic by parents. Although they may be considered "routine" by medical staff, it is important that health care providers remain sensitized to patient and parent experiences of these events. Recent work from pediatric emergency medicine indicates the need for training health care professionals about PTSS; these symptoms were not recognized as PTSS, and medical staff were largely unaware of published screeners that could assist them in understanding the responses of their patients.26 Trauma-informed care can be integrated into medical care quite readily, including, for example, use of toolkits for this purpose, including the D-E-F protocol, which prompts healthcare professionals to assess distress, emotional support, and family needs specific to traumatic stress.27
Furthermore, knowledge and attention to PTSS can lead to more appropriate multidisciplinary care of the patient and family. For example, families can be reassured that their PTSS during treatment are commonplace, be alerted to other potential PTSS reactions, and be guided as to when to seek help (ie, if symptoms interfere with functioning or persist long-term). In addition, psychosocial intervention can be targeted to those parents most at risk, including mothers of children undergoing bone marrow transplantations or other intense, invasive, and/or potentially frightening experiences. Finally, effective treatments for PTSS are emerging for survivors of childhood cancer and their parents. Based on integrations of cognitive behavioral and family therapy approaches, it may be possible to help parents adjust and cope more adaptively to the traumatic aspects of their child's treatment.28,29 Other empirically supported treatments such as maternal problem solving may also be used to reduce the distress experienced by parents during treatment.30,31 Finally, intervening during treatment with both mothers and fathers may help to prevent long-term psychological difficulties for the family. Prospective studies indicate that those parents with the highest levels of distress during treatment continue to persist with long-term distress.32,33 Early identification of at-risk families may promote the development and evaluation of effective brief treatments.25 By helping caregivers address their own psychological well-being, we may be best assuring that the psychological needs of the patients are also met.
As more children survive pediatric malignancies, the long-term well-being of the patient and family emerge as increasingly important. The medical regimens that have proven to be highly effective in successful cancer treatment have unintended consequences, one of which may be the potential for ongoing PTSS in the family. These symptoms, while distressing, may be addressed systematically in routine clinical care and through the inclusion of evidence-based interventions for parents and families during treatment for childhood malignancies.
Authors' Disclosures of Potential Conflicts of Interest
The authors indicated no potential conflicts of interest.
Acknowledgment
The Intensity of Treatment Rating Scale was developed in conjunction with Anna T. Meadows, MD, and Wendy Hobbie, MSN, CRNP, whose contribution to this work we gratefully acknowledge. We also appreciate the assistance of Ann Leahey, MD, and Dr Meadows in completing ratings of treatment intensity.
NOTES
Supported by a Grant from the National Cancer Institute (CA88828).
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