European Journal of Oncology Nursing 18 (2014) 145e150

Contents lists available at ScienceDirect

European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

Perceived long-term and physical health problems after cancer: Adolescent and young adult survivors of childhood cancer in Korea Jaehee Yi a, *, Min Ah Kim b,1, Tian Tian a, 2 a b

University of Utah, College of Social Work, Salt Lake City, UT, USA Yonsei University, School of Social Welfare, Seoul, South Korea

a b s t r a c t Keywords: Cancer survivors Health problems Late effect Physical functioning Mental functioning

Purpose: This study aims to examine the impact of perceived health problems after cancer on perceived physical and mental functioning among adolescent and young adult (AYA) survivors of childhood cancer in Korea. Method: Participants were 225 cancer survivors who were diagnosed before the age of 19, are currently between 15 and 39 years old, and had completed cancer treatment. Each participant completed structured questionnaires. Data were analyzed using descriptive analyses, independent sample t-tests, and multivariate linear regression analyses. Results: A majority (73.1%) of the Korean AYA cancer survivors reported at least one health problem. Growth issues ranked as the most frequently reported; followed by chronic fatigue, vision, learning/ memory issues, and weak bones. Those with learning/memory and chronic fatigue issues reported both lower physical and mental functioning. The greater number of health problems the survivors reported was associated with the lower levels of their perceived physical and mental functioning after controlling for age, gender, cancer type, cancer recurrence, and time since diagnosis. Conclusion: Perceived health problems were prevalent among childhood cancer survivors and were significant in assessing physical and mental functioning. Although late effects after treatment for childhood cancer have been well documented internationally, this study is unique in that it helps understand cancer survivors treated in Korea and raises awareness in Korean society. Ó 2013 Elsevier Ltd. All rights reserved.

Introduction

Late effects

With the high survival rate at around 80% (Howlader et al., 2011), childhood cancer is a chronic disease characterized as a “disease of long duration and generally slow progression” (World Health Organization, 2012). Completing treatment and surviving childhood cancer is, of course, something to celebrate, but young survivors also begin a new and long journey in which they must face the future challenges of late effects, defined as “side effects of cancer treatment that appear months or years after treatment has ended” (Institute of Medicine and National Research Council, 2006, p. 480). Knowing the possible types of late effects and their impact on survivors’ lives would help survivors and their families in addressing the challenges.

Late effects can occur both in physical and psychosocial aspects. Psychosocial late effects such as posttraumatic stress disorder (PTSD) and posttraumatic stress symptom (PTSS) are prevalent among adolescent and young adult (AYA) cancer survivors (Taylor et al., 2012). AYA cancer survivors also tend to have a higher risk of emotional problems compared to their healthy counterparts (Eilertsen et al., 2011), and tend to experience delayed social development (Dieluweit et al., 2010). Hudson et al. (2003) examined the impact of childhood cancer in psychosocial functioning and found that the experience of childhood cancer for certain subgroups of adult survivors may produce chronic psychological and cognitive impairments that hinder adjustment and quality of life. Because the impact of cancer is broad across the whole spectrum of a survivor’s quality of life, this paper has a focused attention on physical health problems perceived by cancer survivors. The development of a new cancer is one of the most overwhelming late effects cancer survivors face (Wilkins and Woodgate, 2008). Second cancers are worrisome because survivors are already

* Corresponding author. 395 South 1500 East, Salt Lake City, UT 84112, USA. E-mail addresses: [email protected] (J. Yi), [email protected] (M. A. Kim), [email protected] (T. Tian). 1 50 Yonsei-Ro, Seodaemun-Gu, Seoul 120-749, South Korea. 2 395 South 1500 East, Salt Lake City, UT 84112, USA. 1462-3889/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2013.11.006

146

J. Yi et al. / European Journal of Oncology Nursing 18 (2014) 145e150

predisposed to morbidity and early mortality, having their general health, quality of life, and long-term survival previously impacted (Hudson, 2005). Several studies have found that childhood cancer survivors are 3e11 times more likely to develop cancer compared to the general population (Cardous-Ubbink et al., 2007; Inskip and Curtis, 2007). Investigators from the Childhood Cancer Survivor Study estimated a cumulative incidence of 73.4% for at least one chronic health problem by age 40 years among the 10,397 adult participants, and more than 40% will experience a chronic condition that is severe, life-threatening, or fatal (Oeffinger et al., 2006). AYA survivors experience not only several adverse health conditions, but also less severe, though lingering, health conditions that affect quality of life in their daily lives. Berg et al. (2009) reported that about 92% of the adolescent survivors were living with late effects such as lower extremity pain and numbness, memory and attention deficits, and fatigue. Young adult survivors also complain about sexual problems, musculoskeletal symptoms, and cancer-related infertility (Dieluweit et al., 2010; Stein et al., 2008). Late effects are prevalent among cancer survivors in general (Geenen et al., 2007; Lackner et al., 2000; Oeffinger and Hudson, 2004), but paying attention to AYA survivors of childhood cancer is particularly important. Diverse physical health problems are presented and recognized as childhood cancer survivors grow and experience new stages of development. For example, sexual functioning and infertility issues begin to emerge as survivors transition to adolescence and young adulthood (Dieluweit et al., 2010; Stein et al., 2008). Recently, Cancer-Related Fatigue (CRF) is receiving research and practice attention. The National Comprehensive Cancer Network defines CRF as, “a distressing persistent, subjective sense of physical, emotional and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning” (Mock et al., 2000). It is different from being tired, and often described to be paralyzing. Although less is known about CRF in children and adolescents than in adults (Whitsett et al., 2008), it is recognized as a significant symptom experienced by children and adolescents with cancer (Gibson et al., 2005; Meeske et al., 2004; Ruland et al., 2009; Whitsett et al., 2008). Reports have shown that fatigue can cause negative changes in health-related quality of life (Eddy and Cruz, 2007; Meeske et al., 2004, 2007; Varni et al., 2002). Although fatigue is a subjective health condition and difficult to measure objectively like pain, it is important to listen to survivors’ fatigue complaints because fatigue is indeed a debilitating health condition and can lead to other severe health issues. Self-reported late effects and quality of life Self-reported late effects have been found to be associated with compromised health-related quality of life (Arden-Close et al., 2011). The study conducted by Taylor et al. (2012) found that those who reported more perceived health problems after cancer had more post-traumatic stress symptoms and disorders. Other studies identified various restrictions in activities among young adult cancer survivors because of late effects. These restrictions occurred in a range of physical activities and participation in selfcare, chores and community mobility, and vocational or school pursuits (Barrera et al., 2005), which may affect identity development among the AYA cancer survivors (Berg et al., 2009). Childhood cancer survivors reporting substantial physical health problems after cancer exhibit less positive self-esteem, lower adjustment scores, and a diminished quality of life (Chen et al., 1998; Kazak et al., 1994; Zeltzer et al., 1997).

Research on late effects or physical health problems and their psychosocial quality of life among AYA survivors is not existent in Korea, which is surprising, given the high five-year survival rate for childhood cancer, 76% (Korea Central Cancer Registry, 2011). Understanding the current status and impact of late effects among AYA survivors is important because for some survivors cancer survival does not end when the treatment is completed, but might go on throughout life. Knowing what kinds of late effects are potentially facing survivors and how to prevent or address these problems is essential for long-term cancer management. Particularly in a culture where talking about cancer is taboo, as in Korea, many cancer survivors may be unaware of late effects and therefore ill-prepared for challenging the consequences ahead of them. Purpose of study This study has three aims: (1) to examine the number and types of health problems perceived by the AYA survivors of childhood cancer in Korea; (2) to examine the differences in their perceived physical and mental functioning among the survivors reporting different types of health problems; and (3) to test the effect of the quantity of health problems identified from the survivors on their perceived physical and mental functioning. Method Participants and setting Participants in this study consisted of a total of 227 respondents. Inclusion criteria for the study were: cancer survivors who were diagnosed with cancer before the age of 19, were between 15 and 39 years of age at the time of study, and had completed their cancer treatment. Two respondents did not meet the study inclusion criteria and were excluded from the analysis, leaving a final study sample of 225 AYA survivors of childhood cancer in Korea. Procedure A sample of participants was recruited through the study announcements on the websites of advocacy foundations and support groups among parents and survivors in Korea. From June 2010 to November 2010, a detailed information sheet and a 15-min structured questionnaire in the Korean language were sent to potential participants either via mail or email, as most young Koreans prefer communicating via email instead of conventional postal mail. The possible participants were also asked to inform their friends who were eligible for the study. This snowballing sampling method was expected to be effective because cancer survivors in Korea are stigmatized and hard to reach, but develop insular support groups among survivors. In return for responding to the questionnaire, each participant received a bookstore gift certificate, equivalent to about five USD. This study was approved by the ethics committee of the Institutional Review Board (IRB) of the university affiliated with the researchers. Measures A range of demographic variables, medical variables, perceived health problems, and perceived physical and mental functioning was measured in the study. All the measures were self-reported by participants. Using back-translation technique (Brislin, 1970), the English version of the questionnaire was first translated into Korean and then translated back into English by a bilingual translator with an excellent knowledge of Korean and English. The translated Korean questionnaire was reviewed by a Korean

J. Yi et al. / European Journal of Oncology Nursing 18 (2014) 145e150

elementary school language teacher in order to ensure understanding of the questions by the adolescent participants. Minor discrepancies involving word choices were thoroughly discussed among the researchers and appropriately amended. Perceived health problems. Respondents were asked to check all the health problems that they had from a list of ten health problems frequently reported in current literature: heart issues, vision issues, liver issues, thyroid issues, hearing difficulty, diabetes, learning or memory issues, weak bones, lung or breathing issues, sexual organs issues, growth (height, weight) issues, and chronic fatigue. The respondents were also asked to describe, in the “others” category, any health problems that they have other than the ten presented ones. Perceived physical and mental functioning. The survivors’ perceived functioning was assessed with the Medical Outcomes Study Short Form-8 (SF-8) (Ware et al., 2001). SF-8 includes one single-item scale for each of the eight health domains: physical functioning, role limitations due to physical health problems, bodily pain, general health, energy/fatigue, social functioning, roleemotional, and mental health. The respondent’s perceived physical and mental functioning was measured using Physical Component Summary (PCS) and Mental Component Summary (MCS), respectively. The PCS and MCS were calculated by weighing each SF-8 item using a norm-based scoring method given in the instrument guidelines (Ware et al., 2001). Each item has a five- or six-point response range. Higher PCS and MCS scores indicate better physical and mental functioning. Demographics and medical variables. Demographic variables included age, gender and marital status. Medical variables included the type of cancer, cancer recurrence, age at diagnosis, and time since diagnosis. Statistical analyses First, descriptive statistics were used to summarize the perceived health problems reported by the respondents. Second, a set of independent sample t-tests were conducted to examine the differences in perceived physical and mental functioning between the survivors with and without major health problems. Third, the number of health problems perceived by cancer survivors was regressed on perceived physical and mental functioning, controlling for major demographic variables, including age and gender, and medical variables, including cancer type, cancer recurrence, and time since diagnosis, by using multivariate linear regression analyses. Both the standardized regression coefficients (b) and unstandardized coefficients (B) are provided along with the level of statistical significance (p-value). All statistical tests were two-sided and were performed using a 5% significance level. SPSS Statistics Version 16.0 for Windows (SPSS, Chicago, IL) was used to perform the statistical analyses. Results Participants characteristics Table 1 provides demographic and medical characteristics of the participants. One hundred thirty-one males (58.5%) and 93 females (41.5%) participated in the study. The mean age was 21.9 years (SD ¼ 4.8), ranging from 15 to 38 years. Most of the survivors had never been married (n ¼ 218, 97.3%). One hundred fifty-nine survivors (71.9%) were diagnosed with a hematological cancer, 32 survivors (14.5%) with a solid or soft tissue tumor, and 30 survivors (13.6%) with a central nervous system (CNS) or brain tumor. Thirtytwo survivors (14.5%) reported a cancer recurrence. The average age

147

Table 1 Participant characteristics (N ¼ 225). Characteristic

n (%)

Age (M  SD years), range Gender Male Female Marital status Never married Married Diagnosed cancer type Hematological cancers Solid or soft tissue tumors CNS or brain tumors Recurrence Yes No Age at diagnosis (M  SD years), range Time since diagnosis (M  SD years), range

21.9  4.8 (15e38) 131 (58.5) 93 (41.5) 218 (97.3) 6 (2.7) 159 (71.9) 32 (14.5) 30 (13.6) 32 (14.5) 188 (85.5) 9.89  4.38 (0e18) 12.03  5.94 (2e29)

Abbreviations: CNS (central nervous system).

at diagnosis was 9.9 years (SD ¼ 4.4, range ¼ 0e18) and the average time since diagnosis was 12.0 years (SD ¼ 5.9, range ¼ 2e29). The frequency and types of the reported health problems The results of the descriptive analyses for the reported health problems are summarized in Table 2. Approximately 26.9% (n ¼ 62) of the survivors reported no health problems, whereas about 73.1% of the respondents (n ¼ 163) reported at least one health problem. Of those reporting health problems, approximately 38.7% (n ¼ 63) reported one, 27.6% (n ¼ 45) reported two, 17.2% (n ¼ 28) reported three, 8.6% (n ¼ 14) reported four, and 8.0% (n ¼ 13) reported five or more health problems. Among those who reported at least one health problem, growth issues (n ¼ 95; 58.3%) were most frequently reported, followed by chronic fatigue (n ¼ 58, 35.6%), vision issues (n ¼ 45, 27.6%), learning or memory issues (n ¼ 42, 25.8%), and weak bones (n ¼ 37, 22.7%). In addition to the ten health problems presented and selected, 31 survivors (19.0%) described other kinds of health problems they experienced. These health problems included immune system dysfunction, skin troubles and hair loss, digestive issues, dental issues, nerve issues, pain, and any other organ damage. Differences in perceived health functioning Table 3 provides the findings on the differences in perceived physical and mental functioning between the survivors with the

Table 2 Type and frequency of perceived health problems (N ¼ 163). Late effects

n (%)

Growth (height, weight) issues Chronic fatigue Vision issues Learning or memory issues Weak bones Sexual organ issues Hearing difficulty Thyroid issues Liver issues Heart issues Diabetes Lung or breathing issues Other

95 58 45 42 37 13 13 10 7 7 5 4 31

(58.3) (35.6) (27.6) (25.8) (22.7) (8.0) (8.0) (6.1) (4.3) (4.3) (3.1) (2.5) (19.0)

Notes: Only those reported at least one health problems were included. Multiple responses were allowed.

148

J. Yi et al. / European Journal of Oncology Nursing 18 (2014) 145e150

Table 3 Perceived physical and mental functioning among survivors with and without major health problems (N ¼ 225). Late effects

n

PCS

MCS

M (SD) Growth issues

Yes No Chronic fatigue Yes No Vision issues Yes No Learning or memory issues Yes No Weak bones Yes No

94 126 57 161 44 176 41 179 37 183

51.3 53.8 49.7 53.7 51.2 53.1 50.8 53.1 50.4 53.2

t Value M (SD)

(7.18) (5.98) (7.16) (6.12) (6.33) (6.66) (7.40) (6.37) (8.12) (6.20)

2.77

**

4.05

***

1.65 2.07* 1.98

46.7 48.5 44.0 49.1 45.5 48.3 44.0 48.6 47.5 47.8

(9.91) (10.07) (11.31) (9.19) (10.53) (9.83) (9.85) (9.88) (10.77) (9.88)

t Value 1.28 3.10**

Discussion 1.69 2.68** .16

Abbreviations: PCS (physical component summary); MCS (mental component summary). * p < 0.05, **p < 0.01, ***p < 0.001.

five main health problems (i.e., growth issues, chronic fatigue, vision issues, learning or memory issues, and weak bones) and those without. The results of independent sample t-tests indicated that the survivors with growth issues (t ¼ 2.77, p < 0.01), chronic fatigue (t ¼ 4.05, p < 0.001), and learning or memory issues (t ¼ 2.07, p < 0.05), showed a lower level of physical functioning than those without. The survivors with chronic fatigue issues (t ¼ 3.10, p < 0.01), and learning or memory issues (t ¼ 2.68, p < 0.01), showed lower mental health function than those without. Results of multivariate regression analyses As presented in Table 4, two separate multiple regression analyses were performed to find the relationships between the number of health problems perceived by the survivors and perceived physical and mental functioning. First, the number of perceived health problems was regressed on perceived physical functioning, controlling for age, gender, cancer type, cancer recurrence, and time since diagnosis. The model explained 15.6% of the total variance in perceived physical functioning (F(7, 201) ¼ 6.48, p < 0.001). The results indicated that the greater number of health problems the survivors reported was associated with lower levels of their perceived physical functioning (B ¼ 1.83, b ¼ .40, p < 0.001). A longer time since diagnosis was found to be associated with poorer physical functioning (B ¼ .29, b ¼ .26, p < 0.01). Also, the number of perceived health problems was regressed on perceived mental functioning, controlling for gender, current age, cancer recurrence, time since diagnosis, and cancer type. The model

Table 4 Multivariate regression analysis predicting perceived physical and mental functioning (N ¼ 225). Variable

The number of health problems Age Gender Solid or soft tissue tumors CNS or brain tumors Recurrence Time since diagnosis R2 Adjusted R2

PCS

MCS

B (SE)

b

1.83 (.30) .23 (.13) .13 (.87) 2.38 (1.22) .55 (1.26) 1.89 (1.26) .29 (.10) .184 .156***

e.40*** 1.74 (.47) .16* .25 (.20) e.01 4.89 (1.35) e.13 1.04 (1.90) .03 3.33 (1.96) .10 1.71 (1.96) e.26** .09 (.16) .167 .138***

B (SE)

explained 13.8% of the total variance in the survivors’ perceived mental functioning (F(7, 201) ¼ 5.75, p < 0.001). The greater number of health problems that the survivors reported was also associated with their lower levels of perceived mental functioning (B ¼ 1.74, b ¼ .25, p < 0.001). Furthermore, being female was found to be a significant predictor for poorer mental functioning (B ¼ 4.93, b ¼ .24, p < 0.001).

b e.25*** e.11 .24*** e.04 .11 .06 e.05

Abbreviations: PCS (physical component summary); MCS (mental component summary); CNS (central nervous system). * p < 0.05, **p < 0.01, ***p < 0.001.

The study examined the prevalence of perceived health problems and frequently reported health problems among the AYA survivors of childhood cancer in Korea. A majority (73.1%) of the Korean AYA cancer survivors reported at least one health problem, which seems to be similar or higher than the levels in the U.S. In a study by Oeffinger et al. (2000), 69% of the AYA survivors in the U.S. reported having at least one late effect. It was also found that the number of late effects was the strongest correlate for adverse physical and mental functioning in this group of survivors. Despite the high prevalence of late effects and their significant impact on quality of life, AYA cancer survivors do not seem to use health care as often as recommended. Oeffinger et al. (1998) reported that about half of the long-term survivors of childhood cancer in the U.S. had not been seen by a physician during the previous two years for evaluation of cancer-related problems. However, there is no literature on the health care use by AYA survivors in Korea. Given that the concept of long-term cancer survivorship is relatively new, and awareness of late effects is low in Korea, this population is likely not to receive adequate health care for their late effects (Kim and Yi, 2012). The main health problems found in the present study were growth issues, chronic fatigue, vision issues, learning/memory problems, and weak bones. Those with learning/memory and chronic fatigue issues reported both lower physical and mental functioning than those without these issues. These study findings are consistent with the findings of other studies. Han et al. (2009) examined late effects among 241 Korean survivors of childhood cancer (median age of 14.2 years). More than half of the survivors (n ¼ 144; 59.8%) had at least one late effect and 23.2% had two or more late effects. The most common late effects were endocrine system (29.0%), followed by thyroid, growth, and sexual/puberty. Chronic fatigue and learning/memory problems are also found to be major health problems among AYA survivors in the U.S. (Berg et al., 2009). Also, a Swiss Childhood Cancer Survivor Study (Rueegg et al., 2013) found that chronic health problems significantly affected their health functioning, mostly physical functioning, general health, and energy and vitality. The larger proportions of childhood cancer survivors than their siblings reported musculoskeletal and neurological problems (27.2% vs. 15.4%), digestive problems (13.7% vs. 7.3%), memory problems (12.1% vs. 2.9%), vision impairments (11.0% vs. 3.5%), hearing problems (9.9% vs. 6.9%), and thyroid problems (9.5% vs. .7%). The mechanism behind the impact of these health problems on functioning needs to be further studied. Variables such as body image, school performance, and peer relationships might mediate the negative impact of health problems. Research has shown that AYA cancer survivors achieve fewer developmental milestones than their peers (Dieluweit et al., 2010). For example, they may have less frequent partnership, and live with their parents more often in adulthood, when compared to their peers. This phenomenon may be due to the medical late effects that are not appropriately addressed in a timely manner. Time since diagnosis, and gender, were found to be significant correlates of the survivors’ functioning. Consistent with some of the existing study findings by Speechley et al. (2006), a longer time

J. Yi et al. / European Journal of Oncology Nursing 18 (2014) 145e150

since diagnosis was associated with poorer physical functioning. Such a finding sounds counterintuitive, but some late effects such as endocrine deficits and hearing loss may be diagnosed only several years after the end of cancer treatment (Lackner et al., 2000). The emergence of late effects later in the survivorship might lead to poor physical functioning. As another important covariate, being female was related to poorer mental functioning, which was also found in other studies (Barr et al., 2003; Langeveld et al., 2004; Shankar et al., 2005; Wu et al., 2007; Zebrack and Chesler, 2002; Zebrack et al., 2002; Zeltzer et al., 1997, 2008, 2009; Zevon et al., 1990). Although it was not statistically significant, older age (B ¼ .227, b ¼ .162, p < 0.1), and being diagnosed with solid or soft tissue tumors (B ¼ 2.375, b ¼ .129, p < 0.1), were potential correlates for poorer physical functioning. The burden of late effects on adult cancer survivors treated at an older age is not yet known, however, age at diagnosis and treatment may be important factors for developing late effects from the developmental perspectives among some cancer survivors. The relationship between age and late effects should be further investigated across different cancer types. A number of limitations need to be noted in interpreting the study findings. This study might not be generalizable to all the AYA cancer survivors in Korea, because the study sample only represents those who were willing to disclose their cancer history and participate in the study. Considering the strong stigma attached to having a cancer history in the country, the levels of health problems and physical/mental functioning might be even worse in those who did not participate in the study. We had a convenience sample of survivors recruited by using snowball sampling method, and therefore, possibly having a biased sample. However, this strategy was necessary to identify hard-to-reach and hidden populations of cancer survivors integrated in the community (Faugier and Sargeant, 1997). Also, the study findings may not capture all the possible health problems, because only a limited number health problems was presented for the respondents to check. In fact, a relatively higher proportion (14%) of the participants described, in the “others” category, health problems other than the presented ones; this is a clue that the presented list of ten health problems must not be exhaustive. This study did not ask about the intensity of the health problems, which might be an important factor on health functioning. In our study, the measures assessing health problems and health functioning were self-reported by participants, which is a shared limitation with other studies on this area of research (e.g., Rueegg et al., 2013; Zeltzer et al., 2008). Although our findings rely on self-reported measures, which may not allow us to provide robust evidence on objective health burdens, this study of AYA survivors in an unstudied group adds to the knowledge on the overall health of AYA cancer survivorship and the influence of specific health problems on perceived health functioning in an unstudied group in Korea. Future research would benefit from studying how the perceived health problems are associated with physical and mental functioning, which would provide ideas for intervention programs. For example, exercise has been found to be a strong influencer of not only fatigue but also other components of physical and mental health among cancer survivors (Kendall et al., 2005; Schmitz et al., 2005). It may be theorized that chronic fatigue as a late effect negatively affects physical activity, thus deteriorating physical and mental functioning. Likewise, other physical, psychological, and social factors may mediate the impact of late effects on quality of life. Although late effects or health problems after treatment for childhood cancer have been well documented internationally, this study is unique in that it helps understand cancer survivors treated in Korea, and raises awareness in Korean society. Understanding the impact of perceived health problems among AYA survivors in an

149

unstudied group suggests that nursing practice should consider these problems in the development of programs to improve the quality of life among cancer survivors. Conflict of interest None declared. References Arden-Close, E., Absolom, K., Greenfield, D.M., Hancock, B.W., Coleman, R.E., Eiser, C., 2011. Gender differences in self-reported late effects, quality of life and satisfaction with clinic in survivors of lymphoma. Psycho-Oncology 20, 1202e 1210. http://dx.doi.org/10.1002/pon.1835. Barr, R., Grant, J., Davidson, A., Horsam, J., Furlong, W., Barr, N., et al., 2003. Healthrelated quality of life in adolescent survivors of cancer in childhood. Medical Pediatric Oncology 41, 271. Barrera, M., Shaw, A.K., Speechley, K.N., Maunsell, E., Pogany, L., 2005. Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer 104, 1751e1760. http://dx.doi.org/10.1002/ cncr.21390. Berg, C., Neufeld, P., Harvey, J., Downes, A., Hayashi, R.J., 2009. Late effects of childhood cancer, participation, and quality of life of adolescents. OTJR: Occupation, Participation and Health 29, 116e124. http://dx.doi.org/10.3928/ 15394492-20090611-04. Brislin, R.W., 1970. Back-translation for cross-cultural research. Journal of CrossCultural Psychology 1, 185e216. http://dx.doi.org/10.1177/ 135910457000100301. Cardous-Ubbink, M.C., Heinen, R.C., Bakker, P.J., van den Berg, H., Oldenburger, F., Caron, H.N., et al., 2007. Risk of second malignancies in long-term survivors of childhood cancer. European Journal of Cancer 43, 351e362. http://dx.doi.org/ 10.1016/j.ejca.2006.10.004. Chen, E., Zeltzer, L.K., Bentler, P.M., Byrne, J., Nicholson, H.S., Meadows, A.T., et al., 1998. Pathways linking treatment intensity and psychosocial outcomes among adult survivors of childhood leukemia. Journal of Health Psychology 3, 23e38. http://dx.doi.org/10.1177/135910539800300102. Dieluweit, U., Debatin, K., Grabow, D., Kaatsch, P., Peter, R., Seitz, D.C.M., et al., 2010. Social outcomes of long-term survivors of adolescent cancer. Psycho-Oncology 19, 1277e1284. http://dx.doi.org/10.1002/pon.1692. Eddy, L., Cruz, M., 2007. The relationship between fatigue and quality of life in children with chronic health problems: a systematic review. Journal of Specialists in Pediatric Nursing 12, 105e114. http://dx.doi.org/10.1111/j.17446155.2007.00099.x. Eilertsen, M.B., Rannestad, T., Indredavik, M.S., Vik, T., 2011. Psychosocial health in children and adolescents surviving cancer. Scandinavian Journal of Caring Science 25, 725e734. http://dx.doi.org/10.1111/j.1471-6712.2011.00883.x. Faugier, J., Sargeant, M., 1997. Sampling hard to reach populations. Journal of Advanced Nursing 26, 790e797. http://dx.doi.org/10.1046/j.13652648.1997.00371.x. Geenen, M.M., Cardous-Ubbink, M.C., Kremer, L.C.M., Van den Bos, C., Van den Pal, H.J.H., Heinen, R.C., et al., 2007. Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. The Journal of the American Medical Association 297, 2705e2715. http://dx.doi.org/10.1001/ jama.297.24.2705. Gibson, F., Garnett, M., Richardson, A., Edwards, J., Sepion, B., 2005. Heavy to carry: a survey of parents’ and healthcare pro perceptions of cancer-related fatigue in children and young people. Cancer Nursing 28, 27e35. http://dx.doi.org/ 10.1097/00002820-200501000-00004. Han, J.W., Kwon, S.Y., Won, S.C., Shin, Y.J., Ko, J.H., Lyu, C.J., 2009. Comprehensive clinical follow-up of late effects in childhood cancer survivors shows the need for early and well-timed intervention. Annals of Oncology 20, 1170e1177. http:// dx.doi.org/10.1093/annonc/mdn778. Howlader, N., Noone, A.M., Krapcho, M., Neyman, N., Aminou, R., Altekruse, S.F., et al., 2011. SEER Cancer Statistics Review, 1975e2008. National Cancer Institute, Bethesda, MD. Retrieved on December 12, 2012 from: http://seer.cancer. gov/csr/1975_2008/. Hudson, M.M., 2005. A model for care across the cancer continuum. Cancer 104, 2638e2642. http://dx.doi.org/10.1002/cncr.21250. Hudson, M.M., Mertens, A.C., Yasui, Y., Hobbie, W., Chen, H., Gurney, J.G., et al., 2003. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. The Journal of the American Medical Association 290, 1583e1592. http://dx.doi.org/10.1001/jama.290.12.1583. Inskip, P.D., Curtis, R.E., 2007. New malignancies following childhood cancer in the United States, 1973e2002. International Journal of Cancer 121, 2233e2240. http://dx.doi.org/10.1002/ijc.22827. Institute of Medicine and National Research Council, 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press, Washington, DC. Kazak, A.E., Christakis, D., Alederfer, M., Coiro, M.J., 1994. Young adolescent cancer survivors and their parents: adjustment, learning problems, and gender. Journal of Family Psychology 8, 74e84. http://dx.doi.org/10.1037/0893-3200.8.1.74.

150

J. Yi et al. / European Journal of Oncology Nursing 18 (2014) 145e150

Kendall, A.R., Mahue-Giangreco, M., Carpenter, C.L., Ganz, P.A., Bernstein, L., 2005. Influence of exercise activity on quality of life in long-term breast cancer survivors. Quality of Life Research 14, 361e371. http://dx.doi.org/10.1007/s11136004-1468-5. Kim, M.A., Yi, J., 2012. Childhood cancer survivor’s services needs for the better quality of life. Korean Academy of Child Health Nursing 18, 19e28. http:// dx.doi.org/10.4094/jkachn.2012.18.1.19. Korea Central Cancer Registry, 2011. Annual Report of Cancer Statistics in Korea in 2009. Ministry of Health and Welfare, Seoul. Retrieved on January 1, 2012 from: https://ncrs.cancer.go.kr/. Lackner, H., Benesch, M., Schagerl, S., Kerbl, R., Schwinger, W., Urban, C., 2000. Prospective evaluation of late effects after childhood cancer therapy with a follow-up over 9 years. European Journal of Pediatrics 159, 750e758. http:// dx.doi.org/10.1007/PL00008340. Langeveld, N.E., Grootenhuis, M.A., Voute, P.A., de Haan, R.J., van den Bos, C., 2004. Quality of life, self-esteem and worries in young adult survivors of childhood cancer. Psycho-Oncology 13, 867e881. http://dx.doi.org/10.1002/pon.800. Meeske, K.A., Patel, S.K., Palmer, S.N., Nelson, M.B., Parow, A.M., 2007. Factors associated with health-related quality of life in pediatric cancer survivors. Pediatric Blood and Cancer 49, 298e305. http://dx.doi.org/10.1002/pbc.20923. Meeske, K., Katz, E.R., Palmer, S.N., Burnwinkle, T., Varni, J.W., 2004. Parent proxyreported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer 101, 2116e 2125. http://dx.doi.org/10.1002/cncr.20609. Mock, V., Atkinson, A., Barsevick, A., Cella, D., Cimprich, B., Cleeland, C., et al., 2000. NCCN practice guidelines for cancer-related fatigue. Oncology (Williston Park) 14, 151e161. Oeffinger, K.C., Hudson, M.M., 2004. Long-term complications following childhood and adolescent cancer: foundations for providing risk-based health care for survivors. A Cancer Journal for Clinicians 54, 208e236. http://dx.doi.org/ 10.3322/canjclin.54.4.208. Oeffinger, K.C., Eshelman, D.A., Tomlinson, G.E., Buchanan, G.R., 1998. Programs for adult survivors of childhood cancer. Journal of Clinical Oncology 16, 2864e2867. Oeffinger, K.C., Eshelman, D.A., Tomlinson, G.E., Buchanan, G.R., Foster, B.M., 2000. Grading of late effects in young adult survivors of childhood cancer followed in an ambulatory adult setting. Cancer 88, 1687e1695. http://dx.doi.org/10.1002/ (SICI)1097-0142(20000401)88:73.0.CO;2-M. Oeffinger, K.C., Mertens, A.C., Sklar, C.A., Kawashima, T., Hudson, M.M., Meadows, A.T., et al., 2006. Chronic health conditions in adult survivors of childhood cancer. The New English Journal of Medicine 355, 1572e1582. http:// dx.doi.org/10.1056/NEJMsa060185. Rueegg, C.S., Gianinazzi, M.E., Rischewski, J., Beck Popovic, M., von der Weid, N.X., Michel, G., et al., 2013. Health-related quality of life in survivors of childhood cancer: the role of chronic health problems [published online ahead of print June 20, 2013] Journal of Cancer Survivorship. http://dx.doi.org/10.1007/s11764013-0288-4. Ruland, C.M., Hamilton, G.A., Schjødt-Osmo, B., 2009. The complexity of symptoms and problems experienced in children with cancer: a review of the literature. Journal of Pain and Symptom Management 37, 403e418. http://dx.doi.org/ 10.1016/j.jpainsymman.2008.03.009. Schmitz, K.H., Holtzman, J., Courneya, K.S., Mâsse, L.C., Duval, S., Kane, R., 2005. Controlled physical activity trials in cancer survivors: a systematic review and meta-analysis. Cancer Epidemiology Biomarkers & Prevention 14, 1588e1595. http://dx.doi.org/10.1158/1055-9965.EPI-04-0703. Shankar, S., Robinson, L., Jenney, M.E.M., Rockwood, T.H., Wu, E., Feusner, J., et al., 2005. Health-related quality of life in young survivors of childhood cancer using

the Minneapolis-Manchester Quality of Life-Youth Form. Pediatrics 115, 435e 442. http://dx.doi.org/10.1542/peds.2004-0649. Speechley, K.N., Barrera, M., Shaw, A.K., Morrison, H.I., Maunsell, E., 2006. Healthrelated quality of life among child and adolescent survivors of childhood cancer. Journal of Clinical Oncology 24, 2536e2543. http://dx.doi.org/10.1200/ JCO.2005.03.9628. SPSS, 2007. SPSS for Windows (Version 16). SPSS, Inc., Chicago, IL. Stein, K.D., Syrjala, K.L., Andrykowski, M.A., 2008. Physical and psychological longterm and late effects of cancer. Cancer 112, 2577e2592. http://dx.doi.org/ 10.1002/cncr.23448. Taylor, N., Absolom, K., Snowden, J., Eiser, C., on behalf of the Late Effects Group Sheffield, 2012. Need for psychological follow-up among young adult survivors of childhood cancer. European Journal of Cancer Care 21, 52e58. http:// dx.doi.org/10.1111/j.1365-2354.2011.01281.x. Varni, J.W., Burwinkle, T.M., Katz, E.R., Meeske, K., Dickinson, P., 2002. The PedsQL in pediatric cancer: reliability and validity of the pediatric quality of life inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer 94, 2090e2106. http://dx.doi.org/10.1002/cncr.10428. Ware Jr., J.E., Kosinski, M., Dewey, J.E., Gandek, B., 2001. How to Score and Interpret Single-item Health Status Measures: a Manual for Users of the SF-8 Health Survey. Quality Metric Incorporated, Lincoln, RI. Whitsett, S.F., Gudmundsdottir, M., Davies, B., McCarthy, P., Friedman, D., 2008. Chemotherapy-related fatigue in childhood cancer: correlates, consequences, and coping strategies. Journal of Pediatric Oncology Nursing 25, 86e96. http:// dx.doi.org/10.1177/1043454208315546. Wilkins, K.L., Woodgate, R.L., 2008. Preventing second cancers in cancer survivors. Oncol. Nurs. Forum 35, E12eE22. http://dx.doi.org/10.1188/08.ONF.E12-E22. World Health Organization, 2012. Chronic Diseases. Retrieved on August 13, 2012 from: http://www.who.int/topics/chronic_diseases/en/. Wu, E., Robison, L.L., Jenney, M.D., Rockwood, T.H., Feusner, J., Friedman, D., et al., 2007. Assessment of health-related quality of life of adolescent cancer patients using the Minneapolis-Manchester Quality of Life Questionnaire. Pediatric Blood Cancer 48, 678e686. http://dx.doi.org/10.1002/pbc.20874. Zebrack, B.J., Chesler, M.A., 2002. Quality of life in childhood cancer survivors. Psycho-Oncology 11, 132e141. http://dx.doi.org/10.1002/pon.569. Zebrack, B., Zeltzer, L., Whitton, J., Mertens, A.C., Odm, L., Berkow, R., 2002. Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin’s disease and non-Hodgkin’s lymphoma: a report for the Childhood Cancer Survivors Study. Pediatrics 110, 42e52. Zeltzer, L.K., Chen, E., Weiss, R., Guo, M.D., Robison, L.L., Meadows, A.T., et al., 1997. Comparison of psychologic outcome in adult survivors of childhood acute lymphoblastic leukemia versus sibling controls: a cooperative children’s cancer group and national institute of health study. Journal of Clinical Oncology 15, 547e556. Zeltzer, L.K., Lu, Q., Leisenring, W., Tsao, J.C., Recklitis, C., Armstrong, G., et al., 2008. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the Childhood Cancer Survivor Study. Cancer Epidemiologic Biomarkers Prevention 17, 435e460. http://dx.doi.org/10.1158/ 1055-9965.EPI-07-2541. Zeltzer, L.K., Recklitis, C., Buchbinder, D., Zebrack, B., Casillas, J., Tsao, J.C.I., et al., 2009. Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. Journal of Clinical Oncology 27, 2396e2404. http://dx.doi.org/10.1200/JCO.2008.21.1433. Zevon, M.A., Neubauer, N.A., Green, D.M., 1990. Adjustment and vocational satisfaction of patients treated during childhood or adolescence for acute lymphoblastic leukemia. American Journal of Pediatric Hematology Oncology 12, 454e461.