606247 JFNXXX10.1177/1074840715606247Journal of Family NursingKamibeppu et al.

research- article2015

Article
Journal of Family Nursing

Predictors of Posttraumatic 2015, Vol. 21(4) 529–550

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DOI: 10.1177/1074840715606247
Among Adolescent and jfn.sagepub.com

Young Adult Survivors

of Childhood Cancer:
Importance of Monitoring
Survivors’ Experiences of
Family Functioning

Kiyoko Kamibeppu, RN, PHN, PhD1,

Shiho Murayama, RN, PHN, MS1,2,
Shuichi Ozono, MD, PhD3,
Naoko Sakamoto, PhD4, Tsuyako Iwai, MD, PhD5,
Keiko Asami, MD, PhD6, Naoko Maeda, MD, PhD7,
Hiroko Inada, MD, PhD3, Naoko Kakee, MA8,
Jun Okamura, MD, PhD9, Keizo Horibe, MD, PhD7,
and Yasushi Ishida, MD, PhD10

Abstract
The purpose of this study was to identify factors associated with posttraumatic
stress symptoms (PTSS) among Japanese long-term childhood cancer survivors

1The University of Tokyo, Japan

2Sophia University, Tokyo, Japan
3Kurume University, Fukuoka, Japan

4Juntendo University, Tokyo, Japan

5Shikoku Medical Center for Children and Adults, Kagawa, Japan

6Niigata Cancer Center Hospital, Japan

7National Hospital Organization Nagoya Medical Center, Japan

8National Research Institute for Child Health and Development, Tokyo, Japan

9National Kyushu Cancer Center, Fukuoka, Japan

10Ehime Prefectural Central Hospital, Japan

Corresponding Author:
Kiyoko Kamibeppu, Department of Family Nursing, Graduate School of
Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033,
Japan. Email: kkamibeppu-tky@umin.ac.jp

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530 Journal of Family Nursing 21(4)

(CCSs). Subjects comprised 185 adolescent and young adult (AYA) CCSs who
completed anonymous self-report questionnaires. Attending physicians also
completed an anonymous disease/treatment data sheet. Mean age of survivors
was approximately 8 years at diagnosis and 23 years at participation. Multiple
regression analysis showed that family functioning, satisfaction with social
support, being female, and interactions between family functioning and gender
and age at the time of diagnosis were associated with PTSS among survivors.
This study revealed family functioning as the most predictive factor of PTSS
among AYA CCSs in Japan. Even when the survivor may have unchangeable risk
factors, family functioning can potentially moderate the effects on PTSS. Thus, it
is crucial for health professionals to carefully monitor and attend to survivors’
experiences of family functioning to mitigate PTSS.

Keywords
cancer, family functioning, posttraumatic stress disorders, survivors

The framework of posttraumatic stress disorder (PTSD) has been found use-ful
in understanding psychological aspects of the experiences of childhood cancer
survivors (CCSs) and their families (Kamibeppu, 2003; Nir, 1985; Rourke,
Stuber, Hobbie, & Kazak, 1999). Although PTSD among CCSs and their
parents has been studied by many researchers, we identified only 12 studies
focusing specifically on posttraumatic stress symptoms (PTSS) among
adolescent and young adult (AYA) CCSs (Erickson & Steiner, 2000, 2001;
Hobbie et al., 2000; Kamibeppu et al., 2010; Kazak et al., 2001; Langeveld,
Grootenhuis, Voûte, & de Haan, 2004; Meeske, Ruccione, Globe,
& Stuber, 2001; Phipps, Long, Hudson, & Rai, 2005; Rourke, Hobbie,
Schwartz, & Kazak, 2007; Schwartz & Droter, 2006; Schwartz et al., 2012;
Taylor, Absolom, Snowden, & Eiser, 2012). These previous studies found a
PTSD prevalence between 6.2% (Kazak et al., 2001) and 23.4% (Kamibeppu et
al., 2010) among AYA CCSs. In addition, although the prevalence of PTSS
varied depending on the measurements and definitions employed, the intru-
sive/reexperiencing symptom cluster was consistently highest among the three
characteristic types of PTSD observed, for example, at rates as high as 63.3%
(Kazak et al., 2001) and 75.3% (Rourke et al., 2007). However, the prevalence
of avoidance-type symptoms was lower, with rates in the range of 14.7%
(Kazak et al., 2001) and 25.8% (Rourke et al., 2007).
Preventing exacerbation of PTSD/PTSS is crucial for AYA CCSs because
PTSD/PTSS among AYA CCSs is related to more psychological problems and
poor health-related quality of life (Meeske et al., 2001; Rourke et al., 2007;
Schwartz & Droter, 2006). In addition, PTSD/PTSS may result in avoidance
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Kamibeppu et al. 531

of the long-term follow-up visit required for adequate medical care in such
patients (Rourke & Kazak, 2005).
A first step in preventing or reducing rates of PTSD/PTSS is to identify
associated factors. Based on previous studies concerning AYA CCSs, we
classified previously identified predictors into four kinds of factors: biologi-cal
factors, including being female (Kamibeppu et al., 2010; Langeveld et al., 2004;
Rourke et al., 2007; Taylor et al., 2012) and reaching young adulthood (Rourke
& Kazak, 2005); psychological factors, including trait anxiety (Hobbie et al.,
2000) and beliefs about health (Rourke et al., 2007; Schwartz et al., 2012);
sociological factors including educational state (Langeveld et al., 2004) and
occupational state (Langeveld et al., 2004); and medical fac-tors, including age
at diagnosis (Schwartz & Droter, 2006), type of diagnosis (Langeveld et al.,
2004), perceived life threat (Hobbie et al., 2000), treatment intensity (Hobbie et
al., 2000), perceived treatment intensity (Rourke et al., 2007), and late
effects/physical difficulties (Langeveld et al., 2004; Rourke et al., 2007;
Schwartz & Droter, 2006; Taylor et al., 2012).
In Japan, parents tend to take care of their children and to be heavily
involved in their children’s lives, both emotionally and materially, not only in
childhood but also through adolescence. In the case of children with chronic
diseases, especially a severe disease such as cancer, parental support may thus
have a major impact on survivors even into adulthood. Furthermore, in our
clinical experience, family functioning may moderate the effects of a medical
trauma on PTSD (Kamibeppu, 2003). Thus, we considered family functioning
as an important factor in predicting PTSD/PTSS as well as in potentially
moderating effects of other factors on PTSD/PTSS. To the best of our
knowledge, no studies have examined potential associations between
PTSD/PTSS and family functioning/social support among AYA CCSs. In
addition, no studies have investigated whether malleable factors (such as family
functioning) can moderate the relationships between unchangeable factors (e.g.,
gender and age at the time of diagnosis [AGED]) and PTSD/ PTSS). In
undertaking the first study to examine predictors of PTSS in Japanese AYA
CCSs, we have adopted family functioning, social support, and interaction
terms with family functioning as candidate predictors.
The purpose of this study was thus to detect predictors of PTSS among AYA
CCSs in Japan. As the first multicenter study of long-term survivors in Japan,
the challenge was to reveal associations between medical or sociologi-cal
factors and PTSS among CCSs, particularly associations between family
functioning and PTSS. In this context, the study focused on three hypotheses:

Hypothesis 1: High family functioning predicts lower PTSS.

Hypothesis 2: Higher degree of satisfaction with social support predicts
lower PTSS.

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532 Journal of Family Nursing 21(4)

Hypothesis 3: High family functioning moderates effects of other rele-

vant factors such as gender, age at diagnosis, and late effects on PTSS.

Method
This descriptive correlational study used a cross-sectional quantitative
design via questionnaires completed by CCSs and disease/treatment data
survey from attending physicians. The study protocol was reviewed and
approved by the Institutional Review Boards and Ethics Committees of the
participating 12 hospitals in Japan. We obtained written consent from all
participating sur-vivors. In addition, if survivors were under 20 years of age,
we obtained writ-ten consent from their guardians or parents.

Participants
We requested the participation of 13 hospitals belonging to the study group of
the Japanese Ministry of Health, Labor, and Welfare in this study. However, as 1
cancer center refused, 12 hospitals ultimately participated, including 5 edu-
cational hospitals, 3 general hospitals, 2 cancer centers, and 2 children’s hos-
pitals. Of the participating hospitals, 5 were located in Tokyo (Kanto district), 2
in Chubu district, 1 in Tohoku district (in the northeastern part of Japan), 2 in
Shikoku district, and 2 in Kyushu (in the southernmost part of Japan).
Inclusion criteria were as follows: (a) diagnosis with cancer at ≤18 years
old, (b) ≥16 years old at the time of the survey, (c) survival >5 years after
cancer diagnosis and continued remission lasting >1 year without any anti-
cancer therapy, and (d) knowledge of own cancer diagnosis. In Japan, most
children with cancer had not been informed of their actual diagnosis until
recently. We included knowledge of the actual diagnosis of cancer as an
inclusion criterion for prospective participants to ensure that participants
were not inadvertently informed of their diagnosis for the first time by read-
ing the explanatory leaflet or questionnaire for this study. Survivors were
excluded if they met any of the following conditions: (a) having health
prob-lems that did not originate in childhood cancer and which obviously
inter-fered significantly with everyday activities and/or social life or (b)
completion of the self-reported questionnaires considered too difficult due
to physical or cognitive impairment.

Procedure
The study was conducted from August 1, 2007, to March 31, 2009. Details
of the procedure have been provided elsewhere (Kamibeppu et al., 2010). In
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Kamibeppu et al. 533

each hospital, attending physicians recruited participants and obtained

guard-ian or parental consent for their participation when the survivor was
<20 years old. Survivors ≥20 years old and those whose guardians/parents
pro-vided consent for participation in the study were given information
about the study by their attending physicians. Among such survivors, those
who agreed to participate in the study completed the consent forms and
mailed them to the Tokyo research center themselves. Survivors also
completed the anony-mous questionnaires and mailed them to the Ehime
research center. The attending physicians of survivors, meanwhile,
completed the disease/treat-ment data sheets regarding diagnoses, treatment,
and late effects by referring to the relevant medical records. The physicians
then sent the data sheets to the Ehime research center by fax.

Measures
Questions were modeled after the questionnaire used by the Childhood Cancer
Survivor Study (CCSS) in North America (Robison et al., 2002) and the
questionnaire used by the British CCSS for a population-based cohort fol-lowed
since 1999 (Hawkins et al., 2008), as well as the questionnaire used by the After
Completion Therapy Clinic at St. Jude Children’s Research Hospital (Hudson et
al., 2004). Attending physicians were responsible for recording the diagnosis,
age at diagnosis, treatment, history of recurrence, treatment inten-sity, years
since completion of treatment, and late effects of survivors (0, absent; 1,
present). CCSs answered questions regarding PTSS and poten-tially associated
factors, including items on age and gender (0, male; 1, female) as biological
factors; family functioning, social support network (SSN; that is, number of
persons providing social support), and social support satisfaction (SSS; that is,
degree of satisfaction with social support) as sociological fac-tors; and whether
the CCS had received an explanation of late effects (ELE) and physical
difficulties (0, present; 1, absent) as medical factors. Although “truth-telling” is
known to represent a predictive factor for PTSS (Izumi, Ozawa, & Hosoya,
2002), all CCSs in this study had been told the truth about their diagnosis.
Therefore, we included “explanations of potential late effects” instead of “truth-
telling” as a potentially associated factor.

Japanese version of the Impact of Event Scale–Revised (IES-R-J). The

Impact of Event Scale–Revised (IES-R) was developed by Weiss and Marner
(Weiss, 2004; Weiss & Marner, 1997). This 22-item self-reporting instrument
includes items that reflect cluster criteria for PTSD, including intrusion, avoidance,
and hyperarousal (American Psychiatric Association, 2000). Symptoms are rated on
a 5-point Likert-type scale for the degree of distress thereby caused during

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534 Journal of Family Nursing 21(4)

the previous week (from 0, none, to 4, extreme). High scores indicate a high
degree of symptom severity. The IES-R-J was developed by Asukai et al.
(2002), and 25 of 26 was set as the cutoff point for PTSD. We asked CCSs to
what extent they were troubled by their own illness and treatment. Cronbach’s
alpha coefficient for this scale among survivors in this study was .94.

Family APGAR (FAPGAR). The FAPGAR was developed by Smilkstein (1978)

as a five-item self-reporting scale to assess an individual’s degree of satisfaction
with the support received from his or her family. The acronym APGAR has been
applied to the functional components of Adaptability (degree of satisfac-tion with
assistance received); Partnership (degree of satisfaction with sharing problems);
Growth (degree of acceptance of wishes to take on new activities); Affection (degree
of satisfaction with responses to feelings such as anger, sor-row, and love); and
Resolve (degree of satisfaction with time spent together). Each item is rated on a 3-
point Likert-type scale for the degree of satisfaction felt (from 0, almost never, to 2,
always). The Japanese version of the FAPGAR was developed by Nagamine (1989).
High scores indicate that a participant perceives the level of family functioning as
high. We asked participants to pro-vide answers with respect to either their original
or their current family. Internal consistency of the FAPGAR was 0.86 among the
CCSs in this study.

Social Support Questionnaire (SSQ). The SSQ was developed by Sarason,

Levine, Basham, and Sarason (1983) and Sarason, Sarason, Shearin, and Pierce
(1987). We recognized it as a reliable, valid, and convenient index of social
support. The Japanese version of the abbreviated six-item SSQ was used to
assess social support in this study (Furukawa, Harai, Hirai, Kitamura,
& Takahashi, 1999). The SSQ has two parts. The first part assesses the num-
ber of persons providing support to the respondent in each question (SSN
score). If the number indicated by the respondent was >9, SSN was accord-
ingly scored as 9. The second part assesses the respondent’s degree of satis-
faction with each form of support (SSS score). The SSS score is measured
on a 6-point Likert-type scale (from 1, very dissatisfied, to 6, very satisfied).
Internal consistencies of the SSN and SSS scores among CCSs in this study
were 0.89 and 0.92, respectively.

Intensity of Treatment Rating Scale version 2. 0 (ITR-2). Treatment intensity

was assessed according to the ITR-2 (Werba et al., 2007). The ITR-2 is an objec-tive
treatment intensity rating system for pediatric cancer. Treatment intensity for each
patient is rated as Level 1 (least intensive), Level 2 (moderately inten-sive), Level 3
(very intensive), or Level 4 (most intensive) by verifying the medical record against
the 34 combination items, including diagnosis, relapse,
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Kamibeppu et al. 535

stage, and treatment modalities. For example, Level 3 includes acute lympho-
blastic leukemia (high or very high risk), brain tumor with two or more treat-
ment modalities, neuroblastoma (Stages 3 and 4) without transplant,
osteosarcoma, rhabdomyosarcoma (Stages 3 and 4), and Wilms’ tumor (Stages 3
and 4). Level 4 includes relapse protocols excluding Hodgkin lymphoma or first
relapse of Wilms’ tumor and acute myeloid leukemia.

Data Analysis
We first compared those who answered the questionnaire with those who did
not, in terms of demographic characteristics and medical information including
gender, age at the time of research, AGED, year at diagnosis, diagnosis, treat-
ment, recurrence, and late effects (χ2 test or Fisher’s exact test for nominal
variables, Mann–Whitney U test for ordinal variables, and Welch t-test for con-
tinuous variables). Next, descriptive statistics, including the IES-R-J total score
and mean scores per item for all three subscales, were determined. Multiple
regression analysis was then performed using total IES-R-J score as a depen-
dent variable and potentially associated factors as independent variables.
In this study, we constructed new variables from each pair of existing vari-
ables assumed to interact and added these to the regression models as indepen-
dent variables, including interaction terms between the FAPGAR and gender/
AGED/ITR-2/late effects measures. First, we rendered all variables binary:
male versus female for gender, present versus absent for late effects, and Level
1 or Level 2 versus Level 3 or Level 4 for ITR-2. For the FAPGAR and AGED
items, meanwhile, we dichotomized responses by the median (i.e., above the
median vs. equal or below the median). After the original variables were mean
centered, we created interaction terms to reduce the chances of multicollinear-
ity influencing the analysis (Aiken & West, 1991; Hayes & Matthes, 2009).
Considering multicollinearity, we entered seven items (gender, AGED, ITR-2,
ELE, physical difficulties, SSS, and FAPGAR) and four interaction terms
(between the FAPGAR and gender/AGED/ITR-2/late effects measures)
simultaneously into multiple regression models. A value of p < .05 was set as
the level of significance for all statistical analyses. These analyses were per-
formed using SPSS version 12.0J software (SPSS, Chicago, IL).

Results
Characteristics of the Participants
Physicians in the 12 participating hospitals asked 261 CCSs to participate in
our research study. Of these, 189 (72.4%) returned the answer sheets to the

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536 Journal of Family Nursing 21(4)

research center. Of the 189 CCSs who participated in the research, we excluded
4 individuals for the following reasons: 1 survivor was 20 years old at the time
of diagnosis, 1 survivor had his mother answer for him, and 2 survivors suffered
from another disease that might have affected everyday activities and social life.
As a result, 185 CCSs (70.9%) were included in the analysis. When comparing
those who answered with those who did not, we found that women were more
likely than men to have answered the questions (p = .001), but no significant
differences were seen in terms of age at the time of research or any medical
factors (data not shown; Kamibeppu et al., 2010).
Mean age at the time of the study was approximately 23 years among CCSs
(Table 1). All diagnoses of cancer were made between 1979 and 2003 (median,
1992; Table 2). Mean ages at the time of diagnosis, at the time of truth-telling,
and at the time of ELE were approximately 8, 15, and 16 years, respectively.
That is, the CCSs typically received their cancer diagnoses at about 8 years of
age, learned the truth about the diagnosis at around 15 years, and received
explanations about late effects at 16 years. Hematological malignancies
comprised 129 cases (69.2%). Regarding treatment, a combina-tion of
chemotherapy and radiation was the most common treatment regimen, applied
to 73 cases (39.5%). Surgery was performed in 70 cases (37.8%) and
hematopoietic stem cell transplantation was conducted in 46 cases (24.9%).
Regarding treatment intensity, 54 cases (29.2%) were classified as Level 1 or 2,
and 131 cases (70.8%) were Level 3 or 4. In addition, among CCSs, 34 cases
(18.4%) showed disease recurrence, 103 cases (55.7%) experienced late effects
according to reports from physicians, and 120 cases (65.9%) had physical
difficulties according to self-reports.

PTSS
The IES-R-J total scores ranged from 0 to 78, and mean (±SD) and median
scores were 15.02 (±15.35) and 9.00 among CCSs, respectively. The
number of CCSs above the cutoff point for PTSD was 38 (20.7%). Mean
scores for each item for all three subscales (Intrusion, Avoidance, and
Hyperarousal) were 0.69, 0.68, and 0.67, respectively (Table 3).

Factors associated with PTSS. Based on multiple regression analysis, gender (β

= .17, p = .013), family functioning (β = −.27, p = .001), and satisfaction with social
support (β = −.18, p = .026) were significantly associated with PTSS (Table 4).
Interaction between gender and family functioning (β = −.17, p = .018) and inter-
action between AGED and family functioning (β = −.20, p = .010) were also
significantly associated with PTSS (Table 4, Figure 1). In addition, physical dif-
ficulties (β = −.14, p = .058) and interactions between late effects and family
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Kamibeppu et al. 537
Table 1. Demographic Data.

CCS (N = 185)

  n %
Gender
  Female 108 58.3
Age at the time of research (years)
  M ± SD (median) 23.1 ± 5.0 (22.0)
  16-19 47 25.7
  20-24 75 41.0
  25-29 38 20.8
  ≥30 25 13.7
Educational achievement
  Less than high school 7 3.8
  High school 65 35.5
  College/vocational school 47 25.7
  University/graduate school 66 36.1
Marital status
  Single 158 86.3
  Married 24 13.1
  Divorced/remarried 1 0.5
Occupation
  Student 76 41.8
  Full-time worker 71 39.0
  Part-time worker 13 7.1
  House maker/unemployed 22 12.1
Annual income (JPY)a
  <1 million 111 60.7
  1-2 million 33 18.0
  2-3 million 21 11.5
  3-5 million 15 8.2
  ≥5 million 2 1.0
Housing and livelihood
  Dependent on parents 133 71.9
  Self-support 45 24.3
  Unknown 7 3.8

Note. CCS = childhood cancer survivor; JPY = Japanese yen.

a1 JPY = US$0.0109526, 1 million JPY = US$10,953, and 5 million JPY =
US$54,763 (average monthly income in January 2010).

functioning (β = −.13, p = .071) showed tendencies toward associations with

PTSS. Along with Hypotheses 1 and 2, Hypothesis 3 was likewise confirmed.
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Table 2. Clinical Data.

Total n n %
Age at the time of diagnosis, M ± SD (median) N = 185 8.3 ± 4.8 (7.8)
(years)
 
0-5 70 37.8
 
6-12 69 37.3
 
13-18 46 24.9
Year at diagnosis N = 185  
 
1979-1983 12 6.5
 
1984-1988 37 20.0
 
1989-1993 62 33.5
 
1994-1998 41 21.9
 
1999-2003 33 18.7
Age at the time of truth-telling, M ± SD n = 145 15.0 ± 4.4 (15.0)
(median)
Age at the time of explanation of late effects, n = 96 16.2 ± 5.2 (15.0)
M ± SD (median)
Duration between diagnosis and survey, N = 185 14.8 ± 5.8 (15.1)
M ± SD (median)
Diagnosis N = 185  
 
Acute lymphoblastic leukemia 81 43.8
 
Acute myeloblastic leukemia 21 11.4
  Other malignant blood disease 4 2.2
 
Malignant lymphoma 23 12.4
 
Neuroblastoma 11 5.9
 
Brain tumor 10 5.4
 
Bone tumor 10 5.4
 
Rhabdomyosarcoma 8 4.3
 
Langerhans cell histiocytosis 4 2.2
 
Wilms’ tumor 4 2.2
 
Hepatic tumor 1 0.5
 
Others 8 4.3
Treatment N = 185  
 
Chemotherapy 182 98.4
 
Radiation 113 61.1
 
Operation 70 37.8
 
Stem cell transplantation 46 24.9
ITR-2 N = 185  
  Level 1: Least intensive 2 1.1
  Level 2: Moderately intensive 52 28.1
  Level 3: Very intensive 61 33.0
  Level 4: Most intensive 70 37.8
(continued
)
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Kamibeppu et al. 539
Table 2.  (continued)

Total n n %

Outcome  
  Recurrence N = 185 34 18.4
  Late effects N = 185 103 55.7
  Physical difficulties according to self-report n = 182 120 65.9
Truth-telling n = 180  
  Explanation of late effects 125 69.4

Note. ITR-2 = Intensity of Treatment Rating Scale version 2.0.

Table 3. IES-R-J, Family APGAR, SSQ Scores Among CCS.

CCS
  n M SD Median
IES-R-J (Cronbach’s α = .94) 184 15.02 15.35 9.00
  Intrusion 184 0.69a 0.75a 0.40a
  Avoidance 184 0.68a 0.73a 0.38a
  Hyperarousal 184 0.67a 0.78a 0.33a
Family APGAR (Cronbach’s α = .86) 181 7.19 2.52 7
SSQ
  SSN (Cronbach’s α = .89) 183 3.39 1.88 3.67
  SSS (Cronbach’s α = .92) 180 4.95 0.86 5

Note. IES-R-J = the Japanese version of the Impact of Event Scale–Revised;

APGAR = adaptability, partnership, growth, affection, and resolve; SSQ = social
support questionnaire; CCS = childhood cancer survivor; SSN = social support
network; SSS = social support satisfaction.
aScores per item.

Although being female, older at the time of diagnosis, and having late
effects emerged as risk factors for PTSS, symptoms were maintained at low
levels if family functioning was high (Figure 1).

Discussion
This study detected several important predictors of PTSS among AYA CCSs in
Japan. It revealed family functioning as the strongest predictor among sev-eral
factors found to be associated with PTSS. In addition, findings revealed
satisfaction with social support as another predictor for PTSS. Moreover,
interactions between family functioning and certain unchangeable biological
and medical factors were significantly associated with PTSS.
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540 Journal of Family Nursing 21(4)
Table 4. Factors Associated With Posttraumatic Stress Symptoms.

B β t p B (95% CI) VIF

14.39 14.68 .000 [12.46, 16.33]  
Gendera 5.04 .17 2.52 .013 [1.09, 8.99] 1.04
Age at the time of diagnosis 0.35 .12 1.60 .112 [−0.08, 0.78] 1.20
ITR-2 3.53 .11 1.51 .132 [−1.08, 8.13] 1.16
Explanation of late effects −2.18 −.07 −1.03 .304 [−6.37, 2.00] 1.04
Physical difficultiesb −4.16 −.14 −1.91 .058 [−8.47, 0.15] 1.13
FAPGAR −1.52 −.27 −3.41 .001 [−2.40, −0.64] 1.35
SSS −2.93 −.18 −2.25 .026 [−5.51, −0.35] 1.37
Gender × FAPGAR −1.92 −.17 −2.40 .018 [−3.50, −0.34] 1.08
Age at the time of diagnosis × −0.24 −.20 −2.62 .010 [−0.41, −0.06] 1.32
FAPGAR
ITR-2 × FAPGAR 1.28 .10 1.20 .233 [−0.83, 3.40] 1.45
Late effects × FAPGAR −1.55 −.13 −1.82 .071 [−3.23, 0.13] 1.21

Note. Adjusted coefficient of determination (adj. R2) = 24.4%. ITR-2 = Intensity of

Treatment Rating Scale version 2.0; FAPGAR = family adaptability, partnership,
growth, affection, and resolve; SSS = social support satisfaction; CI = confidence
interval; VIF = variance inflation factor.
aGender code (male = 0, female = 1).
bPhysical difficulties code (yes = 0, no = 1).

Regarding biological factors, the multiple regression analysis revealed that

being female was associated with higher risk of PTSS, as suggested by
Langeveld et al. (2004). This indication is common among the general popu-
lation (Olff, Langeland, Draijer, & Gersons, 2007). As for medical factors,
treatment intensity, as evaluated by the ITR-2 including combination items of
diagnosis, relapse, stage, and treatment modalities, was not significantly
associated with PTSS. Previous findings regarding treatment intensity have
been inconsistent. Although some studies have reported that intensive treat-
ment is associated with increased risk of full PTSD (Stuber et al., 2010), others
have found that perceived treatment intensity is associated with PTSS, rather
than treatment modalities or objective treatment intensity (Hobbie et al., 2000).
In addition, physical difficulties likely represented another pre-dictive factor for
PTSS, as reported previously (Langeveld et al., 2004; Rourke & Kazak, 2005).
Namely, CCSs with physical difficulties might per-ceive their life as currently
threatened, as noted by Langeveld et al. (2004). At follow-up visits to clinics,
health professionals should pay attention to CCSs complaining of physical
problems to determine whether these patients simultaneously develop
symptoms of intrusion or hyperarousal as PTSS. In addition, we should support
CCSs to prevent the development of symptoms
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Kamibeppu et al. 541

Figure 1. Interactions associated with posttraumatic stress symptoms: (a)

interaction between gender and family function, estimated marginal means of IES-R-
J for each gender and for high/low family APGAR scores after controlling for
covariates (age at the time of diagnosis, ITR-2, explanation of late effects, physical
difficulties, SSS, age at the time of diagnosis × FAPGAR, ITR-2 × FAPGAR, and late
effects × FAPGAR); (b) interaction between age at the time of diagnosis and family
function, estimated marginal means of IES-R-J for high/low age at the time of
diagnosis and for high/low family APGAR scores after controlling for covariates
(gender, ITR-2, explanation of late effects, physical difficulties, SSS, gender ×
FAPGAR, ITR-2 × FAPGAR, and late effects × FAPGAR); and (c) interaction
between late effects and family function, estimated marginal means of IES-R-J
for presence/absence of late effect and for high/low family APGAR scores
after controlling for covariates (gender, age at the time of diagnosis, ITR-2,
explanation of late effects, physical difficulties, SSS, gender × FAPGAR,
age at the time of diagnosis × FAPGAR, and ITR-2 × FAPGAR).
Note. IES-R-J = Japanese version of the Impact of Event Scale–Revised; APGAR =
adaptability, partnership, growth, affection, and resolve; ITR-2 = Intensity of
Treatment Rating Scale version 2.0; SSS = social support satisfaction; FAPGAR =
family adaptability, partnership, growth, affection, and resolve.

of avoidance as PTSS and to prevent the CCSs from dropping out from
follow-up at the clinic (Rourke & Kazak, 2005).
As for Hypothesis 1 in this study, family functioning was the strongest
predictor of PTSS. To the best of our knowledge, this represents the first find-
ing of family functioning as the strongest predictor for PTSS among AYA CCSs.
Some studies have explored associations between PTSS and family functioning
among adolescent CCSs. However, findings have been inconsis-tent (McDonald
& Deatrick, 2011). For example, Kazak et al. (1997) found that maternal family
satisfaction was significantly and negatively associated with PTSS in adolescent
CCSs using the Family Adaptability and Cohesion Evaluation Scale–Version
IIIA and the IES. Ozono et al. (2007), meanwhile, found that parts of family
functioning were significantly associated with

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542 Journal of Family Nursing 21(4)

PTSS among the mothers of CCSs but did not find similar results among
adolescents CCSs using the Family Assessment Device (FAD; Epstein,
Baldwin, & Bishop, 1983) and the IES-R-J. In addition, Alderfer, Navsaria,
and Kazak (2009) indicated that family functioning was associated with
PTSS among adolescent CCSs using the family mean methodology of the
FAD and a structured interview for diagnosis. This study provides clear evi-
dence that family functioning is related to PTSS among AYA CCSs.
As for Hypothesis 2, this study revealed satisfaction with social support
as another significant correlate of PTSS among AYA CCSs. In previous
studies, findings of relationships between social support and PTSS were
also incon-sistent. Ganz, Raz, Gothelf, Yaniv, and Buchval (2010), for
example, reported that PTSS were not significantly related to levels of
social support among young adult CCSs. Regarding adolescent CCSs, while
associations between social support and PTSS have been inconsistent
(Kazak et al., 1997; Stuber et al., 1997), perceived social support has been
found to be negatively associ-ated with PTSS (Izumi et al., 2002).
Improving satisfaction with social sup-port or perceived levels of social
support may be quite effective for decreasing PTSS among Japanese CCSs.
Moreover, as for Hypothesis 3, we similarly found that interactions between
family functioning and gender/AGED were significantly associated with PTSS
(Figure 1). To the best of our knowledge, this is also the first such report among
CCSs studies. Although being female is a risk factor for devel-oping PTSS,
stress symptoms will be maintained at a lower level comparable with that
observed among males if family functioning is high. Similarly, although older
AGED is likely a risk factor for developing PTSS, stress symp-toms will be
maintained at lower levels comparable with those found among younger AGED
survivors if family functioning is high. Finally, although hav-ing late effects is a
risk factor for developing PTSS, stress symptoms will be maintained at lower
levels comparable with those observed among CSSs with no late effects if
family functioning is high. These results highlight the para-mount importance of
highly functioning families for decreasing PTSS among CCSs, particularly
when the CCS displays unchangeable biological or medi-cal risk factors such as
female gender, older AGED, and having some late effect. Therefore, if survivors
present with such unchangeable risk factors, health care professionals should
inquire about survivors’ perceptions of the support they receive from their
family as a way to screen for those survivors who may benefit from further
psychosocial evaluation and possible referral to therapy. Moreover, especially in
Japan where the cultural ideal is that family are generally supportive, we should
also pay careful attention to whether the burden borne by the family might be
too heavy for normal functioning and delve more deeply into their specific
needs as warranted.
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Kamibeppu et al. 543

Limitations
Several limitations must be discussed when interpreting the results from this
study. First, most participating hospitals belonged to a study group for child-
hood hematological malignancies, and the ratio of solid tumors was, there-fore,
small compared with those in the national register of treatment research projects
for chronic specified pediatric diseases (National Center for Child Health
Development, 2012). Second, this investigation focused only on those patients
who received long-term follow-up through their attending pediatri-cians.
Patients with avoidance as PTSS may have dropped out of medical follow-up,
and the severity of PTSS may thus have been underestimated. Third, structured
interviews for diagnosis were not performed for PTSD. Instead, self-reported
questionnaires were used to determine PTSS. As Weiss (2004) indicated, such
questionnaires are not a true proxy for the diagnosis of PTSD. A fourth
limitation was the preclusion of the use of some variables that have been
previously reported as associated with PTSS, such as trait anxiety (Hobbie et
al., 2000), perceived life threat (Hobbie et al., 2000), and perceived treatment
intensity (Rourke et al., 2007). As a fifth limitation, although family functioning
was identified as the strongest predictor of PTSS, we did not distinguish
between the original and current families of the CCS. Moreover, the findings
presented here might be uniquely characteristic of Japan, where parent–child
bonding is very solid even into the child’s adult-hood. Further studies are thus
needed in multicultural populations before findings can be generalized further.
Finally, the study used a cross-sectional design, so no conclusions regarding
causality can be drawn. For instance, there is a possibility those with PTSS may
be more inclined to perceive or report their family as dysfunctional.

Despite these limitations, this study presents evidence that monitoring family
functioning is very important for long-term follow-up of CCSs. If family
functioning can be kept high, PTSS may not develop even when the survivor
has unchangeable biological or medical risk factors. In addition, health care
professionals should pay close attention not only to physical dif-ficulties but
also to satisfaction with social support aspects. Preventing symp-toms of
avoidance from emerging as PTSS is crucial for CCSs and seems likely to
decrease rates of dropout from follow-up. Given that the existing risk-based
follow-up guidelines (Children’s Oncology Group, 2013) do not include any
description of family functioning, we propose adding assessment of family
functioning with emphasis on survivor’s perception of his or her family func-
tioning. More specifically, we recommend that family nurses and other health
care professionals use family assessment and intervention skills including
interventive questions (Imber-Black, 2014; West, Bell, Woodgate, & Moules,

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544 Journal of Family Nursing 21(4)

2015; Wright & Bell, 2009; Wright & Leahey, 2013) during follow-up out-
patient clinic visits or in community health settings to assess and intervene, if
necessary, in family functioning. Future research needs to focus on exploring
familial narratives during treatment and long-term follow-up after primary can-
cer treatment completion. Moreover, it is extremely important to understand the
characteristics of changing relationships between AYA CCS and his or her
original family or newly forming relationships between CCS and his or her
current family, and to clarify how both families and health care professionals
can support family functioning during long-term follow-up.

Conclusion
In conclusion, this study revealed that family functioning and satisfaction
with social support are significant predictors of PTSS among AYA CCSs in
Japan. Family functioning is the strongest predictor, and it moderates PTSS
effectively if survivors have specific risk factors such as being female, older
AGED, and have late effects. Therefore, it is critically important that nurses
and other health care professionals routinely assess family functioning and
offer appropriate family interventions to support family functioning in the
long-term care provided to this vulnerable population of CCSs.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research,
authorship, and/or publication of this article.

Funding
The authors disclosed receipt of the following financial support for the research,
authorship, and/or publication of this article: This study was financially supported
by Japanese Ministry of Health, Labour, and Welfare: Study of quality of life and
prog-nosis in childhood cancer survivors and establishment of the long-term follow-
up system (principal investigator [PI]: Yasushi Ishida) and Study to establish the
stan-dard treatment for childhood hematological malignancies (PI: Keizo Horibe).

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Author Biographies
Kiyoko Kamibeppu, RN, PHN, PhD, is a professor and department chair in the
Department of Family Nursing, Graduate School of Medicine, the University of
Tokyo, Tokyo, Japan. Her research and clinical interests focus on Family Systems
Nursing and childhood cancer survivorship. Her recent publications include, “The
Experience of Japanese Adolescents and Young Adults After Losing Siblings to
Childhood Cancer: Three Types of Narratives” in Journal of Pediatric Oncology
Nursing (2015, with I. Sato & Y. Hoshi), and “Mental Health Among Young Adult
Survivors of Childhood Cancer and Their Siblings Including Posttraumatic Growth”
in Journal of Cancer Survivorship (2010, with I. Sato, M. Honda, S. Ozono, N.
Sakamoto, T. Iwai, . . . Y. Ishida).
Shiho Murayama, RN, PHN, MS, is a visiting researcher at the Department of
Family Nursing, Graduate School of Medicine, the University of Tokyo and an
assis-tant professor at the Department of Nursing, Faculty of Human Sciences,
Sophia University, Tokyo, Japan. Her research and clinical interest focuses on
transition for adolescents and young adults with chronic conditions into adulthood.
Shuichi Ozono, MD, PhD, is an associate professor in the Department of Pediatrics,
Kurume University, Fukuoka, Japan. His research and clinical interests focus on the
relationship between psychological distress and family functioning among childhood
cancer survivors and their families. His recent publications include, “General Health
Status and Late Effects Among Adolescent and Young Adult Survivors of Childhood
Cancer in Japan” in Japanese Journal of Clinical Oncology (2014, with Y. Ishida,
M. Honda, J. Okamura, K. Asami, N. Maeda, . . . K. Horibe) and “Psychological
Distress Related to Patterns of Family Functioning Among Japanese Childhood
Cancer Survivors and Their Parents” in Psycho-Oncology (2010, with T. Saeki, T.
Mantani, A. Ogata, H. Okamura, S. Nakagawa, . . . S. Yamawaki).
Naoko Sakamoto, PhD, is a part-time lecturer in the Department of Public Health,
Juntendo University School of Medicine, Tokyo, Japan. Her research interests
include public health for pediatrics and global health. Her recent publications
include, “Reference Values for Japanese Children’s Respiratory Resistance Using
the LMS Method” in Allergology International (2014, with S. Hagiwara, H.
Mochizuki, R. Muramatsu, H. Koyama, H. Yagi, . . . H. Arakawa).
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June 5, 2016
Kamibeppu et al. 549

Tsuyako Iwai, MD, PhD, is head of the Department of Pediatric Hematology-

Oncology, Shikoku Medical Center for Children and Adults, Kagawa, Japan. Her
research and clinical interests focus on late effects of cancer treatment in childhood
cancer survivors.
Keiko Asami, MD, PhD, the former director of the Department of Pediatrics,
Niigata Cancer Center Hospital, is a pediatric hematologist or oncologist. Her
research and clinical interests focus on childhood cancer survivorship. Her recent
publications include, “Job Discrimination Against Childhood Cancer Survivors in
Japan: A Cross-Sectional Survey” in Pediatrics International (2012, with Y. Ishida
and N. Sakamoto).
Naoko Maeda, MD, PhD, is a pediatric oncologist and head of the Department of
Pediatrics, National Hospital Organization Nagoya Medical Center, Nagoya, Japan.
Her research interests have focused on late effects of childhood cancer sur-vivors
and childhood cancer survivorship. Her recent publications include, “Survey of
Childhood Cancer Survivors Who Stopped Follow-Up Physician Visits” in
Pediatrics International (2010, with K. Horibe, K. Kato, S. Kojima, & M.
Tsurusawa).
Hiroko Inada, MD, PhD, is a pediatric oncologist in the Department of Pediatrics
and Child Health, Kurume University School of Medicine, Fukuoka, Japan. Her
research and clinical interests focus on childhood cancer survivorship.
Naoko Kakee, MA, is a bioethicist and the chief of Division of Bioethics, National
Research Institute for Child Health and Development, Tokyo, Japan. Her research
and clinical interests focus on quality of life (QOL) of children with chronic
conditions and ethical issues in studies involving children.
Jun Okamura, MD, PhD, former director of the Institute for Clinical Research,
National Kyushu Cancer Center, is a pediatric hematologist or oncologist. His
research interests have focused on stem cell transplantation for hematologic malig-
nancies in both children and adults. His recent publications include, “Re-Emerging
Philadelphia Chromosome-Positive Acute Leukemia More Than 20 Years After
Allogeneic Hematopoietic Stem Cell Transplantation” in British Journal of
Hematology (2013, with Y. Kodama, R. Fukano, K. Nakashima, N. Ito, M.
Nishimura, . . . J. Inagaki).
Keizo Horibe, MD, PhD, is a pediatric oncologist and director of the Clinical
Research Center, National Hospital Organization Nagoya Medical Center, Nagoya,
Japan. His research and clinical interests focus on molecular diagnosis and treatment
strategies for childhood leukemia and lymphoma. His recent publications include,
“Incidence and Survival Rates Of Hematological Malignancies in Japanese Children
and Adolescents (2006-2010): Based on Registry Data From the Japanese Society of
Pediatric Hematology” in International Journal of Hematology (2013, with A. Saito,
T. Takimoto, M. Tsuchiba, A. Manabe, M. Shima, . . . S. Mizutani).

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550 Journal of Family Nursing 21(4)

Yasushi Ishida, MD, PhD, is a pediatric oncologist and director of the Pediatric Medical
Center, Ehime Prefectural Central Hospital, Ehime, Japan. His research interests have
focused on quality of life among patients with childhood cancer and childhood cancer
survivorship. His recent publications include, “Recent Employment Trend of Childhood
Cancer Survivors in Japan: A Cross-Sectional Survey” in International Journal of
Clinical Oncology (2014, with M. Hayashi, F. Inoue, & M. Ozawa) and “Social
Outcomes and Quality of Life of Childhood Cancer Survivors in Japan: A Cross-
Sectional Study on Marriage, Education, Employment and Health-Related QOL (SF-36)”
in International Journal of Hematology (2011, with M. Honda, K. Kamibeppu, S. Ozono,
J. Okamura, K. Asami, . . . K. Horibe).

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