Abstract
The purpose of this study was to identify factors associated with posttraumatic stress symptoms (PTSS) among Japanese long-term childhood cancer survivors (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.
The framework of posttraumatic stress disorder (PTSD) has been found useful 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 intrusive/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 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: biological 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 factors, 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 sociological factors and PTSS among CCSs, particularly associations between family functioning and PTSS. In this context, the study focused on three hypotheses:
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 survivors. In addition, if survivors were under 20 years of age, we obtained written 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 educational hospitals, 3 general hospitals, 2 cancer centers, and 2 children’s hospitals. 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 anticancer 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 reading the explanatory leaflet or questionnaire for this study. Survivors were excluded if they met any of the following conditions: (a) having health problems that did not originate in childhood cancer and which obviously interfered 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 each hospital, attending physicians recruited participants and obtained guardian or parental consent for their participation when the survivor was <20 years old. Survivors ≥20 years old and those whose guardians/parents provided 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 anonymous questionnaires and mailed them to the Ehime research center. The attending physicians of survivors, meanwhile, completed the disease/treatment 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 followed 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 intensity, years since completion of treatment, and late effects of survivors (0, absent; 1, present). CCSs answered questions regarding PTSS and potentially 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 factors; 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 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 satisfaction 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, sorrow, 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 provide 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 number of persons providing support to the respondent in each question (SSN score). If the number indicated by the respondent was >9, SSN was accordingly scored as 9. The second part assesses the respondent’s degree of satisfaction 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 objective treatment intensity rating system for pediatric cancer. Treatment intensity for each patient is rated as Level 1 (least intensive), Level 2 (moderately intensive), Level 3 (very intensive), or Level 4 (most intensive) by verifying the medical record against the 34 combination items, including diagnosis, relapse, stage, and treatment modalities. For example, Level 3 includes acute lymphoblastic leukemia (high or very high risk), brain tumor with two or more treatment 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, treatment, 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 continuous 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 dependent variable and potentially associated factors as independent variables.
In this study, we constructed new variables from each pair of existing variables assumed to interact and added these to the regression models as independent 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 multicollinearity 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 performed 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 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 combination 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.
Demographic Data.
Note. CCS = childhood cancer survivor; JPY = Japanese yen.
1 JPY = US$0.0109526, 1 million JPY = US$10,953, and 5 million JPY = US$54,763 (average monthly income in January 2010).
Clinical Data.
Note. ITR-2 = Intensity of Treatment Rating Scale version 2.0.
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).
IES-R-J, Family APGAR, SSQ Scores Among CCS.
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.
Scores per item.
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 interaction between AGED and family functioning (β = −.20, p = .010) were also significantly associated with PTSS (Table 4, Figure 1). In addition, physical difficulties (β = −.14, p = .058) and interactions between late effects and family functioning (β = −.13, p = .071) showed tendencies toward associations with PTSS. Along with Hypotheses 1 and 2, Hypothesis 3 was likewise confirmed. 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).
Factors Associated With Posttraumatic Stress Symptoms.
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.
Gender code (male = 0, female = 1).
Physical difficulties code (yes = 0, no = 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).
Discussion
This study detected several important predictors of PTSS among AYA CCSs in Japan. It revealed family functioning as the strongest predictor among several 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.
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 population (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 treatment 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 predictive factor for PTSS, as reported previously (Langeveld et al., 2004; Rourke & Kazak, 2005). Namely, CCSs with physical difficulties might perceive 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 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 finding 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 inconsistent (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 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 evidence 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 inconsistent. 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 associated with PTSS (Izumi et al., 2002). Improving satisfaction with social support 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 developing 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 symptoms will be maintained at lower levels comparable with those found among younger AGED survivors if family functioning is high. Finally, although having 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 paramount importance of highly functioning families for decreasing PTSS among CCSs, particularly when the CCS displays unchangeable biological or medical 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.
Limitations
Several limitations must be discussed when interpreting the results from this study. First, most participating hospitals belonged to a study group for childhood hematological malignancies, and the ratio of solid tumors was, therefore, 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 pediatricians. 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 adulthood. 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 difficulties but also to satisfaction with social support aspects. Preventing symptoms 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 functioning. 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, 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 cancer 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.
Footnotes
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 prognosis in childhood cancer survivors and establishment of the long-term follow-up system (principal investigator [PI]: Yasushi Ishida) and Study to establish the standard treatment for childhood hematological malignancies (PI: Keizo Horibe).