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Posttraumatic stress in long-term young adult survivors of childhood cancer: A questionnaire survey
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International Journal of Nursing Studies 44 (2007) 1406–1417 www.elsevier.com/locate/ijnurstu
Posttraumatic stress in long-term young adult survivors of childhood cancer: A questionnaire survey Ya-Ling Leea,b,, Sheila Judge Santacrocec,d a
School of Nursing, College of Medicine, National Taiwan University, 1, Jen-Ai Road, Section 1, Taipei 10063, Taiwan b Department of Nursing, National Taiwan University Hospital, Taipei, Taiwan c School of Nursing, Yale University, New Haven, CT, USA d HEROS Program, School of Medicine, Yale University, New Haven, CT, USA Received 11 November 2005; received in revised form 19 June 2006; accepted 13 July 2006
Abstract Background: Posttraumatic stress is one of many psychological late effects in young adult survivors of childhood cancer and needs to be explored thoroughly. Objective: The purpose of this study was to examine the characteristics and correlates of posttraumatic stress symptoms in a sample of young adult survivors of childhood cancer. Design: Cross-sectional and correlational descriptive design was used. Data was collected by a mailed survey. The University of California at Los Angeles Post Traumatic Stress Disorder Index (PTSDI) was the measure selected for the evaluation of posttraumatic stress. Setting: The study took place in a medical center in the Eastern part of the United States. Participants: The inclusion criteria for participants were: (a) diagnosis of childhood cancer between birth and 19 years of age; (b) 3 or more years post successful completion of cancer treatment; (c) free of active cancer; (d) at least 19 years of age; and (e) able to read and write English. A total of 51.1% (N ¼ 46) of the potentially eligible survivors responded to the survey. The analysis was based on the data from 45 respondents who had a mean age of 27.4 years. Results: The mean PTSDI score was 15.7 (SD ¼ 11.0, range ¼ 0–43). Thirteen percent (n ¼ 6) of participants had PTSDI scores that exceeded the cutoff point of 32, which is considered indicative of clinically significant posttraumatic stress disorder (PTSD). Participants who lived alone (t ¼ 2.17, p ¼ .035), had no health insurance (t ¼ 2.08, p ¼ .044) and did not have a history of bone marrow transplantation (t ¼ 4.52, p ¼ .000) reported significantly higher scores on PTSDI than others. The clinically significant PTSD group had a significantly higher rate of living alone than the non-PTSD group (p ¼ .038). Conclusion: Cancer-related posttraumatic stress emerges in childhood cancer survivors in young adulthood. Health care providers should screen childhood cancer survivors for posttraumatic stress so that referrals can be made to provide survivors with further assistance. r 2006 Elsevier Ltd. All rights reserved. Keywords: Young adult; Posttraumatic stress symptom; Posttraumatic stress disorder; The United States
What is already known about the topic? Corresponding author. Tel.: +886 2 2312 3456x8422; fax: +886 2 2321 9913. E-mail address: [email protected] (Y.L. Lee).
Posttraumatic stress is one of the psychological late
0020-7489/$ - see front matter r 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2006.07.002
effects that exist in childhood cancer survivors many years after cancer and its treatment.
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Characteristics of the posttraumatic stress symptoms (PTSS) in previous studies of young adult survivors of childhood cancer have been measured by either the structured interview such as Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, DSM-IV or a self-report measure such as the Impact of Event Scale.
What this paper adds
Findings of current study provide evidence to solidify
the notion that PTSS is pervasive in young adult survivors of childhood cancer many years (mean ¼ 14.2, SD ¼ 6.1) after completion of cancer-related treatment. Findings of three correlates of PTSS in the current study were novel: living alone, no health insurance and not having a history of bone marrow transplantation. This paper provides an easy way to collect data through using a self-report measure: the University of California at Los Angeles Post Traumatic Stress Disorder Index (PTSDI) which reflects the posttraumatic stress disorder (PTSD) symptoms as defined in DSM-IV. This is the first time the PTSDI has been used in a population of young adult survivors of childhood cancer and the results of current study provide construct validity for the PTSDI.
1. Introduction Globally the population of childhood cancer survivors is growing. In 1970, the 5-year survival rate was less than 30%. In 2001, nearly 80% of the 170,509 children younger than 20 years diagnosed with cancer in the United States (US) were expected to be cured of their diseases (Children Oncology Group, 2004; Greenlee et al., 2000; Ries et al., 2004). In Britain, it is estimated that 75% of all pediatric cancer patients will survive for at least 5-years after diagnosis (Cancer Research UK, 2006). In other words, almost 1 in 1000 of the young adult population in Britain is currently a childhood cancer survivor (Davies et al., 2005). In Taiwan, at least 1.4 of every 10,000 people is expected to be a childhood cancer survivor based on a total population of 23,000,000 and the number of childhood cancer survivors who were diagnosed prior to 1997 (Childhood Cancer Foundation, 2003). There is evidence that these survivors will exhibit continual or new posttraumatic stress symptoms (PTSS) many years after the diagnosis and treatment of their cancer (Erickson and Steiner, 2000, 2001; Hobbie et al., 2000; Kazak et al., 2004, 2001;
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Langeveld et al., 2004; Meeske et al., 2001). There is also evidence that the levels of PTSS and the incidence of the posttraumatic stress disorder (PTSD) in young adult survivors of childhood cancer may exceed those reported for child and adolescent survivors (Hobbie et al., 2000). In addition, PTSS and PTSD have been reported in parents who were secondarily traumatized by their child’s cancer diagnosis and treatment (Hobbie et al., 2000; Kazak et al., 2004, 1997). The presence of characteristic PTSS in one domain such as avoidance can also interfere with childhood cancer survivors’ acquisition of information and an understanding of the health risks that are inherent in their particular situation (Hollen et al., 1997). The association between PTSS and health promotion behavior has been reported to be significantly negative (Santacroce and Lee, 2006). Characteristic PTSS such as emotional numbing may delay some domains of individual development, such as the development of intimate relationships outside the family (Hobbie et al., 2000), and subsequently lead to difficulty with the transition to adulthood. Therefore, it is important that nurses develop a familiarity with PTSS and its correlates in young adult survivors of childhood cancer as a way to identify youth with such symptoms so that they can offer interventions that can improve these young adults’ health and support the transition to adulthood. 1.1. Posttraumatic stress PTSS can develop in response to one time and ongoing traumatic events. Stuber and colleagues, (1996) have suggested that, in childhood cancer, it is not only receiving the medical diagnosis but the subsequent anticipated and cyclic hospitalizations, painful procedures and courses of chemotherapy, as well as contact with other children with cancer who are clearly dying or disabled, that can be traumatic. Traumatic events are defined as events that can threaten the life of the self or a loved one (American Psychological Association (APA), 1980). Potentially traumatic events can include, but are not limited to, being engaged in combat, being held hostage, experiencing a natural disaster, being sexual assaulted or the victim of another form of interpersonal violence, and receiving a diagnosis of a life-threatening illness such as cancer for one’s self or child (APA, 1994). Initial reactions to potentially traumatic events can include intense fear, horror, and helplessness. Characteristic symptoms then develop within three characteristic symptom clusters: re-experiencing, avoidance of reminders and numbing of emotions, and increased arousal. The development of these symptoms in the immediate aftermath of a trauma stressor can be normative selfprotective efforts. These symptoms are considered psychopathologic, that is, indicative of full-blown
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PTSD, when symptoms in all three clusters arise after exposure to a traumatic event, continue for more than 1 month, and are associated with high levels of distress and/or significant impairment in the performance of an important life function (APA, 2000). 1.2. Prevalence of PTSD and PTSS in young adult survivors of childhood cancer The prevalence of full-blown PTSD in young adult survivors of childhood cancer has been found to range from 6.2% (Kazak et al., 2001) to 22% (Meeske et al., 2001). The level of PTSS in young adult survivors of childhood cancer can be greater than in child and adolescent survivors (Hobbie et al., 2000). In a study of 78 young adult survivors (ages 18–40 years) of childhood cancer, Hobbie and associates (2000) compared data from this sample with data from younger survivors (ages 8–18 years) from their prior study and found that the young adult survivors had significantly more PTSS (po.02) than younger survivors. Overall, the prevalence of PTSD in young adult cancer survivors is greater than in the general population (APA, 1994; Baxter, 2004; Breslau et al., 1991; Davidson and Fairbank, 1993; Kessler et al., 1995). According to the reports of APA (1994) and Davidson and Fairbank (1993), the lifetime prevalence of PTSD in the general population can range between 1% and 14%. 1.3. Correlates of PTSD and PTSS in young adult survivors of childhood cancer Not everyone develops PTSS following exposure to a potentially traumatic stressor. Gender, employment status, educational level, perceived life threat, psychological distress, and elevated state and trait anxiety have all been shown to influence appraisal of a potentially traumatic event as threatening. For example, across age groups, females are more likely to appraise an event as threatening and develop PTSS than males (Bisson, 2005; Langeveld et al., 2004). Unemployment and a lower educational level were associated with PTSS in a study of 500 young adult survivors of childhood cancer (Langeveld et al., 2004). In addition, disease-related factors such as health insurance status, type of cancer diagnosis, and health status have been found to be associated with health care status. However, no study has investigated the relationships between health care status, health insurance status and PTSS. It has been found that cancer survivors who have difficulties obtaining insurance are less likely to have a general physical examination, a cancer-related visit, or a visit to a cancer center (Oeffinger et al., 2004; Pui et al., 2003; Yeazel et al., 2004). In a study of 500 young adult childhood cancer survivors ages 16–49, researchers found that; type of diagnosis, leukemia/non-Hodgkins
lymphoma with cranial radiation therapy, and severe late effects/health problems, were related to PTSS (Langeveld et al., 2004). It is worth further understanding the socio-demographic and disease characteristics correlated to PTSS as a means to develop useful strategies of intervention to minimize survivors’ psychological distress to improve their health welfare. Previous studies about PTSD and PTSS in young adult childhood cancer survivors were either conducted by means of a structured interview (Erickson and Steiner, 2001; Hobbie et al., 2000; Kazak et al., 2001; Meeske et al., 2001) or a stress-related scale (Langeveld et al., 2004). It is important for nurses to have an easy and valid tool developed specifically to measure PTSD and its related symptoms. Therefore, the purpose of this study was to apply a self-report PTSS measure to examine the characteristics and correlates of PTSS in a sample of young adult survivors of childhood cancer.
2. Methods 2.1. Design and sample Cross-sectional correlational design was used in this study and a mailed survey was the means of data collection. The study utilized a convenience sample. Young adult survivors of childhood cancer were the target population. People who were eligible for the study were identified from the clinical registry of the Health Education, Research and Outcomes for Survivors (HEROS) program, Department of Pediatrics, Yale University School of Medicine. The HEROS program provides comprehensive follow-up care for people who are long-term survivors of childhood cancer. Although the program is a part of the Department of Pediatrics, there is no upper age limit and all young adult survivors of childhood cancer are eligible to participate in HEROS. To be eligible in this study, a person had to be: (a) diagnosed between birth and 19 years of age as having childhood cancer; (b) 3 or more years post successful completion of treatment; (c) free of active cancer; (d) at least 19 years of age; and (e) able to read and write English. Using the above criteria, 105 persons listed in the HEROS database met the first four eligibility criteria. There were 15 eligible survivors whose addresses could not be located; therefore, the number of potential participants was 90. Letters of invitation to participate in the study were mailed to 90 potentially eligible participants. 2.2. Procedure Approval from the Institute Review Board was obtained prior to initiation of data collection. De-identified
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computerized medical records were used to determine study eligibility. Once the study investigator ascertained eligibility, potential participants were invited by the clinical care team to participate in the study. 2.3. Measures Self-reported questionnaires were used to collect data on socio-demographic and disease information, and on posttraumatic related information. De-identified disease-related information was also extracted from medical records as a way to compare the group of respondents with the group of non-respondents. 2.3.1. Socio-demographic variables Personal Information Form (PIF): Socio-demographic data were collected from participants using an investigator-developed 12-item PIF. The items included on the PIF were: age, gender, race/ethnicity, level of education, employment, living status, financial status, household income status, marital status, number of children, health care status, and health insurance status. With the exception of age, all other items were categorical variables. For example, gender was dichotomized as male and female. Living arrangements were assigned to one of five categories and inquired about as follows: ‘‘What is your current living status?’’ The choices were: (1) living with parent(s), (2) living with other adult family member(s), (3) living with own family, (4) living with friends, and (5) living alone. Affirmative answers from the first four of the five choices were categorized as ‘‘living with company’’, while the fifth choice was categorized as ‘‘living alone’’. 2.3.2. Disease variables Medical Record Review Form (MRRF): A seven-item MRRF was developed for this study and used to extract de-identified data from the computerized HEROS medical records for eligible participants. In addition, this 7-item MRRF was included in the survey materials to collect data from participants with anonymous responses as a way to differentiate the data of respondents and non-respondents. The MRRF items included type of diagnosis, type of treatment, age at diagnosis, age at the end of treatment, duration of treatment, time since diagnosis, and time since completion of treatment. Type of diagnosis and type of treatment were categorical variables; the remaining variables were continuous variables. 2.3.3. PTSS variable University of California at Los Angeles Post Traumatic Stress Disorder Index (PTSDI): The 22-item self-report; the PTSDI (Pynoos et al., 1998), was the measure of posttraumatic stress and reflects the most recent Diagnostic and Statistical Manual of Mental Disorders:
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DSM-IV criteria (APA, 1994). The participants were asked to respond to the questions focused on thoughts about their cancer, its treatment and possible late effects. For each specific problem respondents was asked to evaluate how often the problem had occurred in the past month. For example, one item on the re-experience subscale asked: ‘‘When something reminds me of cancer, I get very upset, afraid or sad.’’ The frequency with which the symptom was experienced was indicated using a 5-point Likert-type (0 ¼ none, 1 ¼ little, 2 ¼ some, 3 ¼ much, and 4 ¼ most) response scale. The symptoms for each subscale cluster were; re-experiencing (5 items), avoidance/numbing (7 items), and arousal (5 items). Item responses for the 17 symptom-related items were summed for a total score, with possible total scores ranging from 0 to 68. Higher scores reflected higher levels of PTSS. Participants were dichotomized into, a PTSD group with a total score equal to or greater than 32 (had severe level of symptoms) and, a non-PTSD group with a total score lower than 32. The items that comprised a subscale were summed to obtain a subscale score for each characteristic symptom cluster. Previous studies have reported acceptable internal consistency reliability (a ¼ .84) (Madan-Swain et al., 2000) and offer support for the construct validity (Frederick, 1985; Hobbie et al., 2000; Pynoos et al., 1993) of the PTSDRI (Pynoos et al., 1987) and its adaptation, the PTSDI. 2.4. Analyses Data were analyzed using the Statistical Package for Social Science, Windows version 12.0. w2 and t-tests were used to compare eligible non-respondents to participants on selected demographic and disease characteristics. For the purpose of examining the characteristics of PTSS, descriptive statistics such as frequency, percentage and summary scores were used to determine sample characteristics and psychometrics for the study measures. Cronbach’s a was calculated as the indicator of internal consistency reliability for the PTSDI. For the purpose of examining correlates of PTSS, Pearson correlation and t-test were estimated to identify socio-demographics and disease that were associated with the PTSDI. w2 analyses were performed to test for differences in socio-demographic and disease variables by group assignment (PTSD, without PTSD). Inter-group differences and correlations at the 5% significance level (two-sided) were judged to be significant.
3. Results The total number of respondents was N ¼ 46, a response rate of 51.1%. One respondent was later determined to be ineligible for the study. Thus, data from 45 participants were subject to analysis. The results
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revealed statistically significant differences between the respondent and non-respondent groups with regard to gender and treatment mode. The respondent group included significantly more females and people who had received surgery than the non-respondent group. 3.1. Sample characteristics Table 1 shows that the mean age of the study participants was 27.4 (SD ¼ 5.54, range ¼ 22–47) years. The average number of years since completion of treatment was 14.2 (SD ¼ 6.1, range ¼ 4–31) years. The current study sample was predominantly white (n ¼ 40, 89%). All of the participants had at least a high school diploma and slightly more than half (n ¼ 23, 51%) were college graduates. Almost one third of the sample (n ¼ 14, 31%) had received special educational assistance such as math tutoring in the past, mainly to enhance academic learning and performance. One fourth (n ¼ 11, 24%) of participants were living alone at the time of data collection. More than 84% (n ¼ 38) of the participants were employed for wages at least part-time, and 69% (n ¼ 31) reported financial independence from their parents. Almost half of the participants (n ¼ 19, 42%) had an annual household income of $50,000 or more. Three fourths (n ¼ 34, 76%) of the participants had never been married which was higher than reported in the general population of 15 years and over (n ¼ 732,266, 27.2%) in Connecticut (US Census Bureau, 2004). The participants had been treated for: leukemia (n ¼ 17, 37.8%), lymphoma (n ¼ 13, 28.9%), solid tumors (n ¼ 11, 24.4%), central nervous system tumors (n ¼ 3, 6.7%), and a myelodysplastic syndrome (n ¼ 1, 2.2%). While most of the current study participants (n ¼ 33, 73.3%) had been seen at a minimum by a primary clinician in the past year, only about one-third (n ¼ 17, 37.8%) had been seen for specialized, long-term follow-up. The rate of no health insurance for this study sample was 11% (n ¼ 5). 3.2. Posttraumatic stress characteristics The mean level of PTSS was 15.7 (SD ¼ 11.0, range ¼ 0–43). Six individuals (13.3%) had a total score that exceeded 32, and this was reported to a HEROS clinician. The 13.3% (n ¼ 6) incidence of possible PTSD in the current study falls within the range reported in the literature for young adult survivors of childhood cancer (Erickson and Steiner, 2001; Hobbie et al., 2000; Kazak et al., 2001; Langeveld et al., 2004; Meeske et al., 2001). Based on the criteria for each subscale: (a) at least 1 re-experiencing item with a score greater than 2; (b) at least 3 avoidance items with a score greater than 2; or (c) at least 2 arousal items with a score greater than 2 (Rodriguez et al., 1999), significant levels of
re-experiencing (40%, 18), avoidance (24.4%, 11) and arousal (55.5%, 25) were reported from the current study (see Tables 1, 2 and 3). Cronbach’s a was calculated as the indicator of internal consistency reliability for the PTSDI. The reliability of the PTSDI of current study is acceptable (a ¼ .88). The reliabilities for three subscales of the PTSDI are: re-experiencing (a ¼ .73), avoidance (a ¼ .80), and arousal (a ¼ .66). 3.3. Correlates of posttraumatic stress The correlations and differences of socio-demographic and disease characteristics on PTSS are shown in Table 1. The Pearson correlation and the t-test were used for the above tests. There were significant differences in living arrangement, insurance status, and history of bone marrow transplantation (BMT) by PTSDI score. Participants who lived alone (t ¼ 2.17, p ¼ .035), had no health insurance (t ¼ 2.08, p ¼ .044), or had not experienced BMT (t ¼ 4.52, p ¼ .000) had higher mean PTSDI scores. Table 2 shows differences in socio-demographic and disease variables between the group of participants with PTSD and the group without PTSD. w2 analyses were used to examine the above differences. There was a significant difference between the PTSD group and the non-PTSD group in living arrangement (w2 ¼ 4.31, p ¼ .038) in that the PTSD group had a significantly higher rate of participants living alone.
4. Discussion Although the prevalence of full-blown PTSD in this study was lower than in previous studies of young adult survivors of childhood cancer: 13.3% vs. 20.5% (Hobbie et al., 2000) and 22% (Meeske et al., 2001). The rates of PTSD and PTSS in the current study that fall in the range of previous studies (Table 3) are reasonable. This finding may be due to differences in recruitment mode and response rate. The current study, with recruitment solely through the mail, had a lower response rate (51.1%) than did the previous two studies (61.4% and 63%) in which recruitment was conducted by both the mail and a telephone call follow-up (Hobbie et al., 2000; Meeske et al., 2001). Because people who are recruited through the mail can actually see the mailed questionnaires and may find them upsetting or irrelevant, they can elect to ignore the mailed invitation to participate which results in a lower response rate. On the other hand, recruitment over the telephone can provide a chance to communicate the empathy necessary to enroll more and perhaps more symptomatic participants in the study because a telephone invitation can be more engaging and harder to ignore. The format of response,
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Table 1 Correlations and differences of socio-demographic and disease variables on posttraumatic stress symptoms measured by PTSDI (N ¼ 45) Variables
Age (Years) Education (Years) Age at diagnosis (Years) Years on treatment Years off treatment
Gender Male Female Ethnicity White Non-white College graduate Yes No Educational assistance Yes No Living arrangement Alone Companied Employment Yes No Financial status Independent Others Income o50,000 X50,000 Married status Married Never married Primary care Yes No Specialized follow-up Yes No Insurance status Yes No BMT Yes No
Total sample PTSDI mean: 15.7 (SD ¼ 11) Mean
SD
27.4 14.8 11.4 2.0 14.2
5.5 1.3 4.8 1.1 6.1
N
%
17 28
38 62
14.65 (10.23) 16.36 (11.57)
40 5
89 11
15.18 (11.51) 20.00 (3.54)
23 22
51 49
15.96 (11.66) 15.45 (10.53)
14 31
31 69
17.50 (13.40) 14.90 (9.87)
11 34
24 76
21.73 (11.98) 13.76 (10.09)
38 7
84 16
15.39 (10.46) 17.43 (14.43)
31 14
69 31
15.81 (10.34) 15.50 (12.76)
26 19
58 42
15.42 (11.41) 16.11 (10.71)
11 34
24 76
16.73 (12.18) 15.38 (10.77)
33 12
73 17
15.33 (11.14) 16.75 (11.03)
17 28
38 62
16.35 (12.28) 15.32 (10.36)
PTSDI mean (SD)
40 5
89 11
14.55 (10.36) 25.00 (12.79)
6 39
13 87
6.50 (3.78) 17.13 (11.08)
r/t test (df)
p value
.158 .026 .089 .027 .083
.299 .863 .560 .862 .587
.501(43)
.619
2.00(18.3)
.060
.151(43)
.880
.729(43)
.470
2.174(43)
.035
1.89(43)
.658
.068(43)
.932
.141(43)
.84
.349(43)
.729
.378(43)
.707
.302(43)
.764
2.08(43)
.044
4.52(21.9)
.000***
Note: Income: annual household income, BMT: bone marrow transplantation. po.05, **po.01.
which may be related to the low rate of PTSD, found with this measure, needs to be taken into account in further research.
About 87% of participants in the current study did not have a PTSDI score which was indicative of PTSD. However, similar to previous studies
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Table 2 Differences on socio-demographic and disease variables between the group of participants with PTSD and the group without PTSD (N ¼ 45). Variables
Age (Years) Education (Years) Age at diagnosis (Years) Years on treatment Years off treatment
Gender Male Female Ethnicity White Non-white College graduate Yes No Educational assistance Yes No Living arrangement Alone Companied Employment Yes No Financial status Independent Others Income o50,000 X50,000 Married status Married Never married Primary care Yes No Specialized follow-up Yes No Insurance status Yes No BMT Yes No
Non-PTSD (N ¼ 39)
PTSD (N ¼ 6)
Mean
SD
Mean
SD
t test(df)
p value
26.8 14.8 11.4 2.0 13.7
4.6 1.3 4.7 1.1 5.5
31.7 15.0 11.8 2.2 17.8
9.1 1.3 5.9 1.5 8.6
1.29(5.4) .36(43) .21(43) .43(43) 1.59(43)
.248 .724 .835 .667 .120
N
%
N
%
w2
15 24
38 62
2 4
33 67
34 5
87 13
6 –
100 –
19 20
49 51
4 2
67 33
11 28
28 72
3 3
50 50
7 32
18 82
4 2
67 33
34 5
87 13
4 2
67 32
27 12
69 31
4 2
67 33
23 16
59 41
3 3
50 50
9 30
23 77
2 4
33 67
29 10
74 26
4 2
67 32
14 25
36 64
3 3
50 50
36 3
92 8
4 2
67 33
6 33
15 85
– 6
– 100
0
1.000
.054
.816
.145
.704
.360
.549
4.31
.038
3.74
.053
0
1.000
0
1.000
.001
.973
0
1.00
.045
.833
1.352
.245
.150
.699
po.05.
(Kazak et al., 2001; Erickson and Steiner, 2001), 62% of the participants did have a clinically significant level of symptoms in one of the three characteristic symptom clusters (Table 3). This finding suggests
that most young adult survivors of childhood cancer have PTSS that can interfere with their utilization of health care and ultimately compromise their quality of life.
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Table 3 Results of posttraumatic stress of current study and its comparisons with previous literature in the population of young adult survivors of childhood cancer
Age at study (years) (mean7SD) Years off Tx (mean7SD) Sample size (N) Response rate (%) Study place Recruitment Measure
Results 1 PTSD/Severe: %(n) At least 1 symptom Re-experiencing Avoidance Arousal Results 2 Correlates of PTSD
Current study
Langeveld et al. (2004)
Meeske et al. (2001)
Hobbie et al. (2000)
Kazak et al. (2001)
Erickson and Steiner (2001)
22–47
16–49
18–37
18–40
18–36
12–35
(27.475.5) 4–31 (14.276.1) 45 51.5(46/90) USA Mail
(2475.1) 5–33 (1575.8) 500 92.1(500/543) Netherlands Clinic visit
(2474.3) 2.8–26.7 (1176) 51 63(51/81) USA Mail+telephone
(2574.4) N/A (1175.5) 78 61.4(78/127) USA Mail+telephone
(2574.04) 3–29 (1375.4) 130 N/A USA Mail+telephone
PTSDI (UCLA PTSDI) (self-report)
IES (Impact of Event Scale)(selfreport)
SCID (Structured Clinical Interview)
SCID (Structured Clinical Interview)
SCID (Structured Clinical Interview)
(20.477.8) N/A (10.874.8) 40 51(40/78) USA Clinic visit+telephone SI-PTSD (Structured Interview for PTSD)
13.3 (6)
12.4 (62)
22 (11)
20.5 (16)
6.2 (8)
62.2 (28)
10 (4) 88 (35)
40.0 (18) 24.4 (11) 55.5 (25)
9 (7) 16.7 (13)
Living alone
Female
No health insurance No BMT
Unemployed
mMental distress
kEducational level Type of Dx
kQOL
63.3 (82) 14.7 (19) 31.0 (40) N/A
Severe late effects/health problems
mState/trait anxiety Perceived life threat mIntense Tx histories mMental distress
High levels of restraint Low levels of distress
Note: N/A: not apply, BMT: bone marrow transplantation, QOL: quality of life, Dx: diagnosis, Tx: treatment.
Living alone was correlated with PTSS and was a significant factor in both the PTSD and non-PTSD groups in the current study. This phenomenon may be explained through two perspectives of developmental trend and sources of social support. As part of usual lifespan development, young adults face challenges such as employment decisions, engagement in intimate relationships, and family formation (Erikson, 1968). Living alone is a way that young adults show a level of independence as they transit from adolescents into young adulthood. However, the transition to young adulthood together with increasing cognitive abilities allowing a fuller understanding of the long-term implications of childhood cancer might generate more anxiety and heighten the occurrence of PTSS (Rourke
et al., 1999). Young adult survivors of childhood cancer who live alone may lack sources from among friends and family members to gain emotional and psychological support about future uncertainties and from expert health care providers to acquire information related to the late effects of childhood cancer. The rate of no health insurance was associated with higher levels of PTSS in this study sample. This result is supported by previous studies. For instance, the literature reports that lack of health insurance is correlated with lack of health care and limited nonspecific medical visits in the general population (Brown et al., 1998; Oeffinger et al., 2004) though this factor does not seem to have affected participation in health care for the participants in this study since there were no
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significant differences in participation in primary health care and long-term follow-up according to medical insurance status. Furthermore, one of the possible explanations for the relationship between non-insured survivors and PTSS may be that non-insured survivors lacked access to mental health visits to release their stress. The status of health insurance and its relationships with PTSS and health care are issues and merit further research. Participants with a history of BMT tended to have less PTSS than participants who had not received BMT. This finding is counterintuitive and surprising because BMT, objectively, is an intensive form of medical treatment with substantial acute and long-term side effects and could reasonably be perceived as more life threatening than other cancer treatment modalities. However, the finding in this study is consistent with the literature (Stuber et al., 1996). It could be that survivors appraise BMT as a lifesaver rather than a treatment that may endanger their lives. Another possible explanation is that survivors with a history of BMT maintain closer contacts with oncology specialists. That is, that the BMT survivors benefit from the support received by additional contact with health care providers. The relationship between the subjective appraisal of a potential traumatic stress, the factors that can affect that subjective appraisal and the development of PTSS needs further research. Selection bias does not seem to be present in this study in terms of current age, diagnoses, age at diagnosis, time since diagnosis, duration of treatment, age at offtreatment, and time off-treatment, as no significant differences were detected between the respondents and non-respondents with respect to these variables. Differences were detected between respondents and nonrespondents with respect to both gender and mode of treatment in that the non-respondent group had significantly more males than females. This finding concerning gender differences between the groups is consistent with the literature. For example, a study of 155 childhood cancer survivors age 16–29 (mean ¼ 21) years had a significantly greater proportion of females respondents (46%) than non-respondents (33%) (Eiser et al., 2000). Recruitment of male survivors to survivorship research and long-term follow-up care remains a challenge. Respondents reported higher rates of surgery than non-respondents. However, respondents may have defined surgery as including minor, non-therapeutic procedures such as indwelling venous access device placement and diagnostic biopsy; these procedures were not included by clinicians in their review of the medical records of the HEROS database which was the source of information about non-respondents, and so ‘‘surgery’’ may have been over-reported by participants in comparison with the clinicians who reviewed the records for non-respondents. What is meant by treatment modal-
ities and exposures should be clearly defined in future studies. The percentage of the study sample who had used specialized long-term follow-up care (37.8%, n ¼ 17) in the year prior to participation in this study was substantially less than the percentage of those who had used primary care (73.3%, n ¼ 33). A possible reason for the lower rates of specialized long-term follow-up care in the current sample may be the result of a lack of awareness of the HEROS program which was new at the time of data collection, or avoidance of cancer-related health care. Continued efforts to create awareness of the HEROS program may improve participation in specialized long-term follow-up by survivors in the catchment area. Childhood cancer survivors can use avoidance of cancer-related health care to manage their uncertainty about future health, which in turn can lead to lack of knowledge about potential late effects and the importance of life-long long-term follow-up care. Actively providing information in primary care about health promotion strategies for potentially reducing late effects and the need for life-long follow-up motivates survivors to improve participation in specialized long-term care. Some socio-demographic variables, gender, employment status, educational level, disease related variables, type of diagnosis and late effects/health problems, were found not to relate to PTSS in the current study. These findings contrast with a previous study reported by Langeveld and colleague (2004). Possible explanations for the differences may be the small sample size of current study and/or cultural differences between the US and Netherlands. The comparison and interpretation of study findings should consider the effects of culture. The correlates of PTSS and cultural differences merit international cooperation in research to find out helpful ways to deal with childhood cancer survivors with PTSS. A body of knowledge about adverse psychosocial sequelae of childhood cancer is being developed. Findings from the current study can enrich our understanding about the factors that can influence levels of posttraumatic stress not only in childhood cancer survivorship but potentially in other chronic childhood and adult health conditions. Nursing education can help sensitize nurses to the idea that PTSS and PTSD are significant factors that can affect quality of life in childhood cancer survivorship. Nurses can conduct health education programs to promote awareness among childhood cancer survivors and their family members about normative responses to the stress of diagnosis and treatment of childhood cancer that have the potential to negatively impact survivors’ well-being. In addition, nurses can conduct individualized, group or dyadic counseling for childhood cancer survivors, taking into account the survivor’s particular personal characteristics and psychological profile. Participation in long-term follow-up care is important to childhood
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cancer survivors to help to minimize their anxiety about the state of their illness, provide information, and decrease complexity in navigating the health care system at the transition from pediatric to adult health care and unpredictability about late effects. The results of the study can potentially be utilized by nurses beyond the US since the widespread application of curative treatment regimens and supportive care technologies which have been developed in the US has increased childhood cancer survival rates in other parts of the world. For instance, based on related trends in the US, the overall survival rate and cumulative numbers of childhood cancer survivors can be expected to continue to increase in Taiwan. Therefore, to benefit childhood cancer survivors in Taiwan and Taiwanese society in general, reports about survivors’ responses to childhood cancer in the US can provide the basis for future clinical research, education and care of survivors in Taiwan and other parts of the world where there are increasing rates of survival for children with cancer.
5. Strength and limitation The findings of current study generated from selfreport data provide realistic information about the experience of childhood cancer survivors can be used for further study in the area (Meeske et al., 2001; Schwartz, 2003). Compared to the Structured Clinical Interview for DSM-IV (SCID) (First et al., 1995) and the Impact of Event Scale (IES) (Horowitz et al., 1979) used in previous studies, the self-report PTSDI used in current study offers an easier tool for health care providers to measure PTSD related symptoms. Although the SCID used in the previous three studies (Hobbie et al., 2000; Kazak et al., 2001; Meeske et al., 2001) is likely to be a more sensitive measure, it needs to be administered to the participants by skilled clinicians. The IES was also used in an earlier study of 500 young adult survivors of childhood cancer which only examined two clusters of PTSD symptoms: intrusive thought and avoidance (Langeveld et al., 2004). Compared to the self-report measure of the IES for posttraumatic stress, the PTSDI may provide a more comprehensive understanding of the criteria of PTSD-related symptoms perceived by survivors. The PTSDI is suggested to be a useful measure in the population of young adult survivors of childhood cancer and further use is necessary to establish its psychometric properties. The current study has two major limitations. First, the sample was recruited from only one study site, only focused on young adult survivors, and the sample size was small; these factors limit the generalizability of the study results to other sites and other age groups. Second, long-term survivors of central nervous system (CNS) malignancy are underrepresented in this study sample in
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that the 5-year survival rate of primary CNS malignancy approximates the survival rate for acute lymphoblastic leukemia (ALL) (Ries et al., 2004), but the percentage of CNS tumor survivors (6.7%) is less than the percentage of ALL survivors (37.8%) in current study sample. This is probably because, at Yale New-Haven Hospital, longterm survivors of CNS malignancies are followed by pediatric neurology not pediatric oncology and were not included in the HEROS database from which persons who were potentially eligible for the study were identified. In the future, researchers should collaborate across clinical departments to identify and recruit more representative samples of childhood cancer survivors and increase the generalizability of the results.
6. Conclusion The findings of this study support the idea that young adult survivors of childhood cancer can exhibit PTSS many years after the traumas of diagnosis and treatment (Erickson and Steiner, 2000, 2001; Hobbie et al., 2000; Kazak et al., 2001; Meeske et al., 2001) and thus merit attention from nursing. The prevalence of full-blown PTSD in the current study was greater than that in the overall general population (APA, 1994; Baxter, 2004). Posttraumatic stress is an important issue for survivors and needs to be included in nursing assessments and interventions for childhood cancer survivors. For example, nurses need to encourage childhood cancer survivors to receive life-long long-term follow-up care in either a primary care or specialty care setting, and as a part of that health care screen for PTSS with particular vigilance to survivors who live alone, have no health insurance, or do not have experience of BMT.
Acknowledgments Special thanks for the advisory guidance and assistance of Drs. Ruth McCorkle, Lois Sadler, Pamela Hinds, and Nina Kadan-Lottick. We deeply appreciate the responses from the study participants and we also sincerely thank the team from the HEROS program, Department of Pediatrics, Yale University School of Medicine for their help. This study was supported by funding to Dr. Lee from the Ministry of Education, Taiwan.
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International Journal of Nursing Studies 44 (2007) 1406–1417 www.elsevier.com/locate/ijnurstu
Posttraumatic stress in long-term young adult survivors of childhood cancer: A questionnaire survey Ya-Ling Leea,b,, Sheila Judge Santacrocec,d a
School of Nursing, College of Medicine, National Taiwan University, 1, Jen-Ai Road, Section 1, Taipei 10063, Taiwan b Department of Nursing, National Taiwan University Hospital, Taipei, Taiwan c School of Nursing, Yale University, New Haven, CT, USA d HEROS Program, School of Medicine, Yale University, New Haven, CT, USA Received 11 November 2005; received in revised form 19 June 2006; accepted 13 July 2006
Abstract Background: Posttraumatic stress is one of many psychological late effects in young adult survivors of childhood cancer and needs to be explored thoroughly. Objective: The purpose of this study was to examine the characteristics and correlates of posttraumatic stress symptoms in a sample of young adult survivors of childhood cancer. Design: Cross-sectional and correlational descriptive design was used. Data was collected by a mailed survey. The University of California at Los Angeles Post Traumatic Stress Disorder Index (PTSDI) was the measure selected for the evaluation of posttraumatic stress. Setting: The study took place in a medical center in the Eastern part of the United States. Participants: The inclusion criteria for participants were: (a) diagnosis of childhood cancer between birth and 19 years of age; (b) 3 or more years post successful completion of cancer treatment; (c) free of active cancer; (d) at least 19 years of age; and (e) able to read and write English. A total of 51.1% (N ¼ 46) of the potentially eligible survivors responded to the survey. The analysis was based on the data from 45 respondents who had a mean age of 27.4 years. Results: The mean PTSDI score was 15.7 (SD ¼ 11.0, range ¼ 0–43). Thirteen percent (n ¼ 6) of participants had PTSDI scores that exceeded the cutoff point of 32, which is considered indicative of clinically significant posttraumatic stress disorder (PTSD). Participants who lived alone (t ¼ 2.17, p ¼ .035), had no health insurance (t ¼ 2.08, p ¼ .044) and did not have a history of bone marrow transplantation (t ¼ 4.52, p ¼ .000) reported significantly higher scores on PTSDI than others. The clinically significant PTSD group had a significantly higher rate of living alone than the non-PTSD group (p ¼ .038). Conclusion: Cancer-related posttraumatic stress emerges in childhood cancer survivors in young adulthood. Health care providers should screen childhood cancer survivors for posttraumatic stress so that referrals can be made to provide survivors with further assistance. r 2006 Elsevier Ltd. All rights reserved. Keywords: Young adult; Posttraumatic stress symptom; Posttraumatic stress disorder; The United States
What is already known about the topic? Corresponding author. Tel.: +886 2 2312 3456x8422; fax: +886 2 2321 9913. E-mail address: [email protected] (Y.L. Lee).
Posttraumatic stress is one of the psychological late
0020-7489/$ - see front matter r 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2006.07.002
effects that exist in childhood cancer survivors many years after cancer and its treatment.
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Characteristics of the posttraumatic stress symptoms (PTSS) in previous studies of young adult survivors of childhood cancer have been measured by either the structured interview such as Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, DSM-IV or a self-report measure such as the Impact of Event Scale.
What this paper adds
Findings of current study provide evidence to solidify
the notion that PTSS is pervasive in young adult survivors of childhood cancer many years (mean ¼ 14.2, SD ¼ 6.1) after completion of cancer-related treatment. Findings of three correlates of PTSS in the current study were novel: living alone, no health insurance and not having a history of bone marrow transplantation. This paper provides an easy way to collect data through using a self-report measure: the University of California at Los Angeles Post Traumatic Stress Disorder Index (PTSDI) which reflects the posttraumatic stress disorder (PTSD) symptoms as defined in DSM-IV. This is the first time the PTSDI has been used in a population of young adult survivors of childhood cancer and the results of current study provide construct validity for the PTSDI.
1. Introduction Globally the population of childhood cancer survivors is growing. In 1970, the 5-year survival rate was less than 30%. In 2001, nearly 80% of the 170,509 children younger than 20 years diagnosed with cancer in the United States (US) were expected to be cured of their diseases (Children Oncology Group, 2004; Greenlee et al., 2000; Ries et al., 2004). In Britain, it is estimated that 75% of all pediatric cancer patients will survive for at least 5-years after diagnosis (Cancer Research UK, 2006). In other words, almost 1 in 1000 of the young adult population in Britain is currently a childhood cancer survivor (Davies et al., 2005). In Taiwan, at least 1.4 of every 10,000 people is expected to be a childhood cancer survivor based on a total population of 23,000,000 and the number of childhood cancer survivors who were diagnosed prior to 1997 (Childhood Cancer Foundation, 2003). There is evidence that these survivors will exhibit continual or new posttraumatic stress symptoms (PTSS) many years after the diagnosis and treatment of their cancer (Erickson and Steiner, 2000, 2001; Hobbie et al., 2000; Kazak et al., 2004, 2001;
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Langeveld et al., 2004; Meeske et al., 2001). There is also evidence that the levels of PTSS and the incidence of the posttraumatic stress disorder (PTSD) in young adult survivors of childhood cancer may exceed those reported for child and adolescent survivors (Hobbie et al., 2000). In addition, PTSS and PTSD have been reported in parents who were secondarily traumatized by their child’s cancer diagnosis and treatment (Hobbie et al., 2000; Kazak et al., 2004, 1997). The presence of characteristic PTSS in one domain such as avoidance can also interfere with childhood cancer survivors’ acquisition of information and an understanding of the health risks that are inherent in their particular situation (Hollen et al., 1997). The association between PTSS and health promotion behavior has been reported to be significantly negative (Santacroce and Lee, 2006). Characteristic PTSS such as emotional numbing may delay some domains of individual development, such as the development of intimate relationships outside the family (Hobbie et al., 2000), and subsequently lead to difficulty with the transition to adulthood. Therefore, it is important that nurses develop a familiarity with PTSS and its correlates in young adult survivors of childhood cancer as a way to identify youth with such symptoms so that they can offer interventions that can improve these young adults’ health and support the transition to adulthood. 1.1. Posttraumatic stress PTSS can develop in response to one time and ongoing traumatic events. Stuber and colleagues, (1996) have suggested that, in childhood cancer, it is not only receiving the medical diagnosis but the subsequent anticipated and cyclic hospitalizations, painful procedures and courses of chemotherapy, as well as contact with other children with cancer who are clearly dying or disabled, that can be traumatic. Traumatic events are defined as events that can threaten the life of the self or a loved one (American Psychological Association (APA), 1980). Potentially traumatic events can include, but are not limited to, being engaged in combat, being held hostage, experiencing a natural disaster, being sexual assaulted or the victim of another form of interpersonal violence, and receiving a diagnosis of a life-threatening illness such as cancer for one’s self or child (APA, 1994). Initial reactions to potentially traumatic events can include intense fear, horror, and helplessness. Characteristic symptoms then develop within three characteristic symptom clusters: re-experiencing, avoidance of reminders and numbing of emotions, and increased arousal. The development of these symptoms in the immediate aftermath of a trauma stressor can be normative selfprotective efforts. These symptoms are considered psychopathologic, that is, indicative of full-blown
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PTSD, when symptoms in all three clusters arise after exposure to a traumatic event, continue for more than 1 month, and are associated with high levels of distress and/or significant impairment in the performance of an important life function (APA, 2000). 1.2. Prevalence of PTSD and PTSS in young adult survivors of childhood cancer The prevalence of full-blown PTSD in young adult survivors of childhood cancer has been found to range from 6.2% (Kazak et al., 2001) to 22% (Meeske et al., 2001). The level of PTSS in young adult survivors of childhood cancer can be greater than in child and adolescent survivors (Hobbie et al., 2000). In a study of 78 young adult survivors (ages 18–40 years) of childhood cancer, Hobbie and associates (2000) compared data from this sample with data from younger survivors (ages 8–18 years) from their prior study and found that the young adult survivors had significantly more PTSS (po.02) than younger survivors. Overall, the prevalence of PTSD in young adult cancer survivors is greater than in the general population (APA, 1994; Baxter, 2004; Breslau et al., 1991; Davidson and Fairbank, 1993; Kessler et al., 1995). According to the reports of APA (1994) and Davidson and Fairbank (1993), the lifetime prevalence of PTSD in the general population can range between 1% and 14%. 1.3. Correlates of PTSD and PTSS in young adult survivors of childhood cancer Not everyone develops PTSS following exposure to a potentially traumatic stressor. Gender, employment status, educational level, perceived life threat, psychological distress, and elevated state and trait anxiety have all been shown to influence appraisal of a potentially traumatic event as threatening. For example, across age groups, females are more likely to appraise an event as threatening and develop PTSS than males (Bisson, 2005; Langeveld et al., 2004). Unemployment and a lower educational level were associated with PTSS in a study of 500 young adult survivors of childhood cancer (Langeveld et al., 2004). In addition, disease-related factors such as health insurance status, type of cancer diagnosis, and health status have been found to be associated with health care status. However, no study has investigated the relationships between health care status, health insurance status and PTSS. It has been found that cancer survivors who have difficulties obtaining insurance are less likely to have a general physical examination, a cancer-related visit, or a visit to a cancer center (Oeffinger et al., 2004; Pui et al., 2003; Yeazel et al., 2004). In a study of 500 young adult childhood cancer survivors ages 16–49, researchers found that; type of diagnosis, leukemia/non-Hodgkins
lymphoma with cranial radiation therapy, and severe late effects/health problems, were related to PTSS (Langeveld et al., 2004). It is worth further understanding the socio-demographic and disease characteristics correlated to PTSS as a means to develop useful strategies of intervention to minimize survivors’ psychological distress to improve their health welfare. Previous studies about PTSD and PTSS in young adult childhood cancer survivors were either conducted by means of a structured interview (Erickson and Steiner, 2001; Hobbie et al., 2000; Kazak et al., 2001; Meeske et al., 2001) or a stress-related scale (Langeveld et al., 2004). It is important for nurses to have an easy and valid tool developed specifically to measure PTSD and its related symptoms. Therefore, the purpose of this study was to apply a self-report PTSS measure to examine the characteristics and correlates of PTSS in a sample of young adult survivors of childhood cancer.
2. Methods 2.1. Design and sample Cross-sectional correlational design was used in this study and a mailed survey was the means of data collection. The study utilized a convenience sample. Young adult survivors of childhood cancer were the target population. People who were eligible for the study were identified from the clinical registry of the Health Education, Research and Outcomes for Survivors (HEROS) program, Department of Pediatrics, Yale University School of Medicine. The HEROS program provides comprehensive follow-up care for people who are long-term survivors of childhood cancer. Although the program is a part of the Department of Pediatrics, there is no upper age limit and all young adult survivors of childhood cancer are eligible to participate in HEROS. To be eligible in this study, a person had to be: (a) diagnosed between birth and 19 years of age as having childhood cancer; (b) 3 or more years post successful completion of treatment; (c) free of active cancer; (d) at least 19 years of age; and (e) able to read and write English. Using the above criteria, 105 persons listed in the HEROS database met the first four eligibility criteria. There were 15 eligible survivors whose addresses could not be located; therefore, the number of potential participants was 90. Letters of invitation to participate in the study were mailed to 90 potentially eligible participants. 2.2. Procedure Approval from the Institute Review Board was obtained prior to initiation of data collection. De-identified
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computerized medical records were used to determine study eligibility. Once the study investigator ascertained eligibility, potential participants were invited by the clinical care team to participate in the study. 2.3. Measures Self-reported questionnaires were used to collect data on socio-demographic and disease information, and on posttraumatic related information. De-identified disease-related information was also extracted from medical records as a way to compare the group of respondents with the group of non-respondents. 2.3.1. Socio-demographic variables Personal Information Form (PIF): Socio-demographic data were collected from participants using an investigator-developed 12-item PIF. The items included on the PIF were: age, gender, race/ethnicity, level of education, employment, living status, financial status, household income status, marital status, number of children, health care status, and health insurance status. With the exception of age, all other items were categorical variables. For example, gender was dichotomized as male and female. Living arrangements were assigned to one of five categories and inquired about as follows: ‘‘What is your current living status?’’ The choices were: (1) living with parent(s), (2) living with other adult family member(s), (3) living with own family, (4) living with friends, and (5) living alone. Affirmative answers from the first four of the five choices were categorized as ‘‘living with company’’, while the fifth choice was categorized as ‘‘living alone’’. 2.3.2. Disease variables Medical Record Review Form (MRRF): A seven-item MRRF was developed for this study and used to extract de-identified data from the computerized HEROS medical records for eligible participants. In addition, this 7-item MRRF was included in the survey materials to collect data from participants with anonymous responses as a way to differentiate the data of respondents and non-respondents. The MRRF items included type of diagnosis, type of treatment, age at diagnosis, age at the end of treatment, duration of treatment, time since diagnosis, and time since completion of treatment. Type of diagnosis and type of treatment were categorical variables; the remaining variables were continuous variables. 2.3.3. PTSS variable University of California at Los Angeles Post Traumatic Stress Disorder Index (PTSDI): The 22-item self-report; the PTSDI (Pynoos et al., 1998), was the measure of posttraumatic stress and reflects the most recent Diagnostic and Statistical Manual of Mental Disorders:
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DSM-IV criteria (APA, 1994). The participants were asked to respond to the questions focused on thoughts about their cancer, its treatment and possible late effects. For each specific problem respondents was asked to evaluate how often the problem had occurred in the past month. For example, one item on the re-experience subscale asked: ‘‘When something reminds me of cancer, I get very upset, afraid or sad.’’ The frequency with which the symptom was experienced was indicated using a 5-point Likert-type (0 ¼ none, 1 ¼ little, 2 ¼ some, 3 ¼ much, and 4 ¼ most) response scale. The symptoms for each subscale cluster were; re-experiencing (5 items), avoidance/numbing (7 items), and arousal (5 items). Item responses for the 17 symptom-related items were summed for a total score, with possible total scores ranging from 0 to 68. Higher scores reflected higher levels of PTSS. Participants were dichotomized into, a PTSD group with a total score equal to or greater than 32 (had severe level of symptoms) and, a non-PTSD group with a total score lower than 32. The items that comprised a subscale were summed to obtain a subscale score for each characteristic symptom cluster. Previous studies have reported acceptable internal consistency reliability (a ¼ .84) (Madan-Swain et al., 2000) and offer support for the construct validity (Frederick, 1985; Hobbie et al., 2000; Pynoos et al., 1993) of the PTSDRI (Pynoos et al., 1987) and its adaptation, the PTSDI. 2.4. Analyses Data were analyzed using the Statistical Package for Social Science, Windows version 12.0. w2 and t-tests were used to compare eligible non-respondents to participants on selected demographic and disease characteristics. For the purpose of examining the characteristics of PTSS, descriptive statistics such as frequency, percentage and summary scores were used to determine sample characteristics and psychometrics for the study measures. Cronbach’s a was calculated as the indicator of internal consistency reliability for the PTSDI. For the purpose of examining correlates of PTSS, Pearson correlation and t-test were estimated to identify socio-demographics and disease that were associated with the PTSDI. w2 analyses were performed to test for differences in socio-demographic and disease variables by group assignment (PTSD, without PTSD). Inter-group differences and correlations at the 5% significance level (two-sided) were judged to be significant.
3. Results The total number of respondents was N ¼ 46, a response rate of 51.1%. One respondent was later determined to be ineligible for the study. Thus, data from 45 participants were subject to analysis. The results
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revealed statistically significant differences between the respondent and non-respondent groups with regard to gender and treatment mode. The respondent group included significantly more females and people who had received surgery than the non-respondent group. 3.1. Sample characteristics Table 1 shows that the mean age of the study participants was 27.4 (SD ¼ 5.54, range ¼ 22–47) years. The average number of years since completion of treatment was 14.2 (SD ¼ 6.1, range ¼ 4–31) years. The current study sample was predominantly white (n ¼ 40, 89%). All of the participants had at least a high school diploma and slightly more than half (n ¼ 23, 51%) were college graduates. Almost one third of the sample (n ¼ 14, 31%) had received special educational assistance such as math tutoring in the past, mainly to enhance academic learning and performance. One fourth (n ¼ 11, 24%) of participants were living alone at the time of data collection. More than 84% (n ¼ 38) of the participants were employed for wages at least part-time, and 69% (n ¼ 31) reported financial independence from their parents. Almost half of the participants (n ¼ 19, 42%) had an annual household income of $50,000 or more. Three fourths (n ¼ 34, 76%) of the participants had never been married which was higher than reported in the general population of 15 years and over (n ¼ 732,266, 27.2%) in Connecticut (US Census Bureau, 2004). The participants had been treated for: leukemia (n ¼ 17, 37.8%), lymphoma (n ¼ 13, 28.9%), solid tumors (n ¼ 11, 24.4%), central nervous system tumors (n ¼ 3, 6.7%), and a myelodysplastic syndrome (n ¼ 1, 2.2%). While most of the current study participants (n ¼ 33, 73.3%) had been seen at a minimum by a primary clinician in the past year, only about one-third (n ¼ 17, 37.8%) had been seen for specialized, long-term follow-up. The rate of no health insurance for this study sample was 11% (n ¼ 5). 3.2. Posttraumatic stress characteristics The mean level of PTSS was 15.7 (SD ¼ 11.0, range ¼ 0–43). Six individuals (13.3%) had a total score that exceeded 32, and this was reported to a HEROS clinician. The 13.3% (n ¼ 6) incidence of possible PTSD in the current study falls within the range reported in the literature for young adult survivors of childhood cancer (Erickson and Steiner, 2001; Hobbie et al., 2000; Kazak et al., 2001; Langeveld et al., 2004; Meeske et al., 2001). Based on the criteria for each subscale: (a) at least 1 re-experiencing item with a score greater than 2; (b) at least 3 avoidance items with a score greater than 2; or (c) at least 2 arousal items with a score greater than 2 (Rodriguez et al., 1999), significant levels of
re-experiencing (40%, 18), avoidance (24.4%, 11) and arousal (55.5%, 25) were reported from the current study (see Tables 1, 2 and 3). Cronbach’s a was calculated as the indicator of internal consistency reliability for the PTSDI. The reliability of the PTSDI of current study is acceptable (a ¼ .88). The reliabilities for three subscales of the PTSDI are: re-experiencing (a ¼ .73), avoidance (a ¼ .80), and arousal (a ¼ .66). 3.3. Correlates of posttraumatic stress The correlations and differences of socio-demographic and disease characteristics on PTSS are shown in Table 1. The Pearson correlation and the t-test were used for the above tests. There were significant differences in living arrangement, insurance status, and history of bone marrow transplantation (BMT) by PTSDI score. Participants who lived alone (t ¼ 2.17, p ¼ .035), had no health insurance (t ¼ 2.08, p ¼ .044), or had not experienced BMT (t ¼ 4.52, p ¼ .000) had higher mean PTSDI scores. Table 2 shows differences in socio-demographic and disease variables between the group of participants with PTSD and the group without PTSD. w2 analyses were used to examine the above differences. There was a significant difference between the PTSD group and the non-PTSD group in living arrangement (w2 ¼ 4.31, p ¼ .038) in that the PTSD group had a significantly higher rate of participants living alone.
4. Discussion Although the prevalence of full-blown PTSD in this study was lower than in previous studies of young adult survivors of childhood cancer: 13.3% vs. 20.5% (Hobbie et al., 2000) and 22% (Meeske et al., 2001). The rates of PTSD and PTSS in the current study that fall in the range of previous studies (Table 3) are reasonable. This finding may be due to differences in recruitment mode and response rate. The current study, with recruitment solely through the mail, had a lower response rate (51.1%) than did the previous two studies (61.4% and 63%) in which recruitment was conducted by both the mail and a telephone call follow-up (Hobbie et al., 2000; Meeske et al., 2001). Because people who are recruited through the mail can actually see the mailed questionnaires and may find them upsetting or irrelevant, they can elect to ignore the mailed invitation to participate which results in a lower response rate. On the other hand, recruitment over the telephone can provide a chance to communicate the empathy necessary to enroll more and perhaps more symptomatic participants in the study because a telephone invitation can be more engaging and harder to ignore. The format of response,
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Table 1 Correlations and differences of socio-demographic and disease variables on posttraumatic stress symptoms measured by PTSDI (N ¼ 45) Variables
Age (Years) Education (Years) Age at diagnosis (Years) Years on treatment Years off treatment
Gender Male Female Ethnicity White Non-white College graduate Yes No Educational assistance Yes No Living arrangement Alone Companied Employment Yes No Financial status Independent Others Income o50,000 X50,000 Married status Married Never married Primary care Yes No Specialized follow-up Yes No Insurance status Yes No BMT Yes No
Total sample PTSDI mean: 15.7 (SD ¼ 11) Mean
SD
27.4 14.8 11.4 2.0 14.2
5.5 1.3 4.8 1.1 6.1
N
%
17 28
38 62
14.65 (10.23) 16.36 (11.57)
40 5
89 11
15.18 (11.51) 20.00 (3.54)
23 22
51 49
15.96 (11.66) 15.45 (10.53)
14 31
31 69
17.50 (13.40) 14.90 (9.87)
11 34
24 76
21.73 (11.98) 13.76 (10.09)
38 7
84 16
15.39 (10.46) 17.43 (14.43)
31 14
69 31
15.81 (10.34) 15.50 (12.76)
26 19
58 42
15.42 (11.41) 16.11 (10.71)
11 34
24 76
16.73 (12.18) 15.38 (10.77)
33 12
73 17
15.33 (11.14) 16.75 (11.03)
17 28
38 62
16.35 (12.28) 15.32 (10.36)
PTSDI mean (SD)
40 5
89 11
14.55 (10.36) 25.00 (12.79)
6 39
13 87
6.50 (3.78) 17.13 (11.08)
r/t test (df)
p value
.158 .026 .089 .027 .083
.299 .863 .560 .862 .587
.501(43)
.619
2.00(18.3)
.060
.151(43)
.880
.729(43)
.470
2.174(43)
.035
1.89(43)
.658
.068(43)
.932
.141(43)
.84
.349(43)
.729
.378(43)
.707
.302(43)
.764
2.08(43)
.044
4.52(21.9)
.000***
Note: Income: annual household income, BMT: bone marrow transplantation. po.05, **po.01.
which may be related to the low rate of PTSD, found with this measure, needs to be taken into account in further research.
About 87% of participants in the current study did not have a PTSDI score which was indicative of PTSD. However, similar to previous studies
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Table 2 Differences on socio-demographic and disease variables between the group of participants with PTSD and the group without PTSD (N ¼ 45). Variables
Age (Years) Education (Years) Age at diagnosis (Years) Years on treatment Years off treatment
Gender Male Female Ethnicity White Non-white College graduate Yes No Educational assistance Yes No Living arrangement Alone Companied Employment Yes No Financial status Independent Others Income o50,000 X50,000 Married status Married Never married Primary care Yes No Specialized follow-up Yes No Insurance status Yes No BMT Yes No
Non-PTSD (N ¼ 39)
PTSD (N ¼ 6)
Mean
SD
Mean
SD
t test(df)
p value
26.8 14.8 11.4 2.0 13.7
4.6 1.3 4.7 1.1 5.5
31.7 15.0 11.8 2.2 17.8
9.1 1.3 5.9 1.5 8.6
1.29(5.4) .36(43) .21(43) .43(43) 1.59(43)
.248 .724 .835 .667 .120
N
%
N
%
w2
15 24
38 62
2 4
33 67
34 5
87 13
6 –
100 –
19 20
49 51
4 2
67 33
11 28
28 72
3 3
50 50
7 32
18 82
4 2
67 33
34 5
87 13
4 2
67 32
27 12
69 31
4 2
67 33
23 16
59 41
3 3
50 50
9 30
23 77
2 4
33 67
29 10
74 26
4 2
67 32
14 25
36 64
3 3
50 50
36 3
92 8
4 2
67 33
6 33
15 85
– 6
– 100
0
1.000
.054
.816
.145
.704
.360
.549
4.31
.038
3.74
.053
0
1.000
0
1.000
.001
.973
0
1.00
.045
.833
1.352
.245
.150
.699
po.05.
(Kazak et al., 2001; Erickson and Steiner, 2001), 62% of the participants did have a clinically significant level of symptoms in one of the three characteristic symptom clusters (Table 3). This finding suggests
that most young adult survivors of childhood cancer have PTSS that can interfere with their utilization of health care and ultimately compromise their quality of life.
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Table 3 Results of posttraumatic stress of current study and its comparisons with previous literature in the population of young adult survivors of childhood cancer
Age at study (years) (mean7SD) Years off Tx (mean7SD) Sample size (N) Response rate (%) Study place Recruitment Measure
Results 1 PTSD/Severe: %(n) At least 1 symptom Re-experiencing Avoidance Arousal Results 2 Correlates of PTSD
Current study
Langeveld et al. (2004)
Meeske et al. (2001)
Hobbie et al. (2000)
Kazak et al. (2001)
Erickson and Steiner (2001)
22–47
16–49
18–37
18–40
18–36
12–35
(27.475.5) 4–31 (14.276.1) 45 51.5(46/90) USA Mail
(2475.1) 5–33 (1575.8) 500 92.1(500/543) Netherlands Clinic visit
(2474.3) 2.8–26.7 (1176) 51 63(51/81) USA Mail+telephone
(2574.4) N/A (1175.5) 78 61.4(78/127) USA Mail+telephone
(2574.04) 3–29 (1375.4) 130 N/A USA Mail+telephone
PTSDI (UCLA PTSDI) (self-report)
IES (Impact of Event Scale)(selfreport)
SCID (Structured Clinical Interview)
SCID (Structured Clinical Interview)
SCID (Structured Clinical Interview)
(20.477.8) N/A (10.874.8) 40 51(40/78) USA Clinic visit+telephone SI-PTSD (Structured Interview for PTSD)
13.3 (6)
12.4 (62)
22 (11)
20.5 (16)
6.2 (8)
62.2 (28)
10 (4) 88 (35)
40.0 (18) 24.4 (11) 55.5 (25)
9 (7) 16.7 (13)
Living alone
Female
No health insurance No BMT
Unemployed
mMental distress
kEducational level Type of Dx
kQOL
63.3 (82) 14.7 (19) 31.0 (40) N/A
Severe late effects/health problems
mState/trait anxiety Perceived life threat mIntense Tx histories mMental distress
High levels of restraint Low levels of distress
Note: N/A: not apply, BMT: bone marrow transplantation, QOL: quality of life, Dx: diagnosis, Tx: treatment.
Living alone was correlated with PTSS and was a significant factor in both the PTSD and non-PTSD groups in the current study. This phenomenon may be explained through two perspectives of developmental trend and sources of social support. As part of usual lifespan development, young adults face challenges such as employment decisions, engagement in intimate relationships, and family formation (Erikson, 1968). Living alone is a way that young adults show a level of independence as they transit from adolescents into young adulthood. However, the transition to young adulthood together with increasing cognitive abilities allowing a fuller understanding of the long-term implications of childhood cancer might generate more anxiety and heighten the occurrence of PTSS (Rourke
et al., 1999). Young adult survivors of childhood cancer who live alone may lack sources from among friends and family members to gain emotional and psychological support about future uncertainties and from expert health care providers to acquire information related to the late effects of childhood cancer. The rate of no health insurance was associated with higher levels of PTSS in this study sample. This result is supported by previous studies. For instance, the literature reports that lack of health insurance is correlated with lack of health care and limited nonspecific medical visits in the general population (Brown et al., 1998; Oeffinger et al., 2004) though this factor does not seem to have affected participation in health care for the participants in this study since there were no
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significant differences in participation in primary health care and long-term follow-up according to medical insurance status. Furthermore, one of the possible explanations for the relationship between non-insured survivors and PTSS may be that non-insured survivors lacked access to mental health visits to release their stress. The status of health insurance and its relationships with PTSS and health care are issues and merit further research. Participants with a history of BMT tended to have less PTSS than participants who had not received BMT. This finding is counterintuitive and surprising because BMT, objectively, is an intensive form of medical treatment with substantial acute and long-term side effects and could reasonably be perceived as more life threatening than other cancer treatment modalities. However, the finding in this study is consistent with the literature (Stuber et al., 1996). It could be that survivors appraise BMT as a lifesaver rather than a treatment that may endanger their lives. Another possible explanation is that survivors with a history of BMT maintain closer contacts with oncology specialists. That is, that the BMT survivors benefit from the support received by additional contact with health care providers. The relationship between the subjective appraisal of a potential traumatic stress, the factors that can affect that subjective appraisal and the development of PTSS needs further research. Selection bias does not seem to be present in this study in terms of current age, diagnoses, age at diagnosis, time since diagnosis, duration of treatment, age at offtreatment, and time off-treatment, as no significant differences were detected between the respondents and non-respondents with respect to these variables. Differences were detected between respondents and nonrespondents with respect to both gender and mode of treatment in that the non-respondent group had significantly more males than females. This finding concerning gender differences between the groups is consistent with the literature. For example, a study of 155 childhood cancer survivors age 16–29 (mean ¼ 21) years had a significantly greater proportion of females respondents (46%) than non-respondents (33%) (Eiser et al., 2000). Recruitment of male survivors to survivorship research and long-term follow-up care remains a challenge. Respondents reported higher rates of surgery than non-respondents. However, respondents may have defined surgery as including minor, non-therapeutic procedures such as indwelling venous access device placement and diagnostic biopsy; these procedures were not included by clinicians in their review of the medical records of the HEROS database which was the source of information about non-respondents, and so ‘‘surgery’’ may have been over-reported by participants in comparison with the clinicians who reviewed the records for non-respondents. What is meant by treatment modal-
ities and exposures should be clearly defined in future studies. The percentage of the study sample who had used specialized long-term follow-up care (37.8%, n ¼ 17) in the year prior to participation in this study was substantially less than the percentage of those who had used primary care (73.3%, n ¼ 33). A possible reason for the lower rates of specialized long-term follow-up care in the current sample may be the result of a lack of awareness of the HEROS program which was new at the time of data collection, or avoidance of cancer-related health care. Continued efforts to create awareness of the HEROS program may improve participation in specialized long-term follow-up by survivors in the catchment area. Childhood cancer survivors can use avoidance of cancer-related health care to manage their uncertainty about future health, which in turn can lead to lack of knowledge about potential late effects and the importance of life-long long-term follow-up care. Actively providing information in primary care about health promotion strategies for potentially reducing late effects and the need for life-long follow-up motivates survivors to improve participation in specialized long-term care. Some socio-demographic variables, gender, employment status, educational level, disease related variables, type of diagnosis and late effects/health problems, were found not to relate to PTSS in the current study. These findings contrast with a previous study reported by Langeveld and colleague (2004). Possible explanations for the differences may be the small sample size of current study and/or cultural differences between the US and Netherlands. The comparison and interpretation of study findings should consider the effects of culture. The correlates of PTSS and cultural differences merit international cooperation in research to find out helpful ways to deal with childhood cancer survivors with PTSS. A body of knowledge about adverse psychosocial sequelae of childhood cancer is being developed. Findings from the current study can enrich our understanding about the factors that can influence levels of posttraumatic stress not only in childhood cancer survivorship but potentially in other chronic childhood and adult health conditions. Nursing education can help sensitize nurses to the idea that PTSS and PTSD are significant factors that can affect quality of life in childhood cancer survivorship. Nurses can conduct health education programs to promote awareness among childhood cancer survivors and their family members about normative responses to the stress of diagnosis and treatment of childhood cancer that have the potential to negatively impact survivors’ well-being. In addition, nurses can conduct individualized, group or dyadic counseling for childhood cancer survivors, taking into account the survivor’s particular personal characteristics and psychological profile. Participation in long-term follow-up care is important to childhood
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cancer survivors to help to minimize their anxiety about the state of their illness, provide information, and decrease complexity in navigating the health care system at the transition from pediatric to adult health care and unpredictability about late effects. The results of the study can potentially be utilized by nurses beyond the US since the widespread application of curative treatment regimens and supportive care technologies which have been developed in the US has increased childhood cancer survival rates in other parts of the world. For instance, based on related trends in the US, the overall survival rate and cumulative numbers of childhood cancer survivors can be expected to continue to increase in Taiwan. Therefore, to benefit childhood cancer survivors in Taiwan and Taiwanese society in general, reports about survivors’ responses to childhood cancer in the US can provide the basis for future clinical research, education and care of survivors in Taiwan and other parts of the world where there are increasing rates of survival for children with cancer.
5. Strength and limitation The findings of current study generated from selfreport data provide realistic information about the experience of childhood cancer survivors can be used for further study in the area (Meeske et al., 2001; Schwartz, 2003). Compared to the Structured Clinical Interview for DSM-IV (SCID) (First et al., 1995) and the Impact of Event Scale (IES) (Horowitz et al., 1979) used in previous studies, the self-report PTSDI used in current study offers an easier tool for health care providers to measure PTSD related symptoms. Although the SCID used in the previous three studies (Hobbie et al., 2000; Kazak et al., 2001; Meeske et al., 2001) is likely to be a more sensitive measure, it needs to be administered to the participants by skilled clinicians. The IES was also used in an earlier study of 500 young adult survivors of childhood cancer which only examined two clusters of PTSD symptoms: intrusive thought and avoidance (Langeveld et al., 2004). Compared to the self-report measure of the IES for posttraumatic stress, the PTSDI may provide a more comprehensive understanding of the criteria of PTSD-related symptoms perceived by survivors. The PTSDI is suggested to be a useful measure in the population of young adult survivors of childhood cancer and further use is necessary to establish its psychometric properties. The current study has two major limitations. First, the sample was recruited from only one study site, only focused on young adult survivors, and the sample size was small; these factors limit the generalizability of the study results to other sites and other age groups. Second, long-term survivors of central nervous system (CNS) malignancy are underrepresented in this study sample in
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that the 5-year survival rate of primary CNS malignancy approximates the survival rate for acute lymphoblastic leukemia (ALL) (Ries et al., 2004), but the percentage of CNS tumor survivors (6.7%) is less than the percentage of ALL survivors (37.8%) in current study sample. This is probably because, at Yale New-Haven Hospital, longterm survivors of CNS malignancies are followed by pediatric neurology not pediatric oncology and were not included in the HEROS database from which persons who were potentially eligible for the study were identified. In the future, researchers should collaborate across clinical departments to identify and recruit more representative samples of childhood cancer survivors and increase the generalizability of the results.
6. Conclusion The findings of this study support the idea that young adult survivors of childhood cancer can exhibit PTSS many years after the traumas of diagnosis and treatment (Erickson and Steiner, 2000, 2001; Hobbie et al., 2000; Kazak et al., 2001; Meeske et al., 2001) and thus merit attention from nursing. The prevalence of full-blown PTSD in the current study was greater than that in the overall general population (APA, 1994; Baxter, 2004). Posttraumatic stress is an important issue for survivors and needs to be included in nursing assessments and interventions for childhood cancer survivors. For example, nurses need to encourage childhood cancer survivors to receive life-long long-term follow-up care in either a primary care or specialty care setting, and as a part of that health care screen for PTSS with particular vigilance to survivors who live alone, have no health insurance, or do not have experience of BMT.
Acknowledgments Special thanks for the advisory guidance and assistance of Drs. Ruth McCorkle, Lois Sadler, Pamela Hinds, and Nina Kadan-Lottick. We deeply appreciate the responses from the study participants and we also sincerely thank the team from the HEROS program, Department of Pediatrics, Yale University School of Medicine for their help. This study was supported by funding to Dr. Lee from the Ministry of Education, Taiwan.
References American Psychological Association, 2000. Diagnostic and Statistical Manual—Text Revision (DSM-IV-TR, 2000). Author, Washington, DC. Retrieved 10 October 2003, from http://online.statref.com
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