Abstract Significant advancements in treatment modalities over the past few decades have significantly improved the survival rates of many types of childhood cancer, directing attention to the psychosocial consequences of successful treatment and subsequent survival. This study assesses quality of life (QoL) among survivors of childhood cancer. Data were collected by means of a survey questionnaire. Participants were assured of confidentiality and of the voluntary nature of participation. Participants ranged in age from 12 to 24 years (mean age = 17.2); 62 percent were male; 45.6 percent were in secondary grades (middle school or high school). Results showed that among the QoL domains, spiritual subscale ranked highest, and physical domain showed the lowest mean score. Self-esteem emerged as an important predictor for social domain of QoL. Cancer-specific worry emerged as a significant predictor for overall QoL. The findings suggest that survivors rated high on positive life changes and sense of purpose, which are associated with positive QoL. However, this was tempered by worries and uncertainty. This study provides seminal information on the psychosocial needs of childhood cancer survivors in an Asian context that can be used by health care professionals and providers to further promote support and health care following treatment. cancer, childhood cancer survivors, future expectations, quality of life, self-esteem Adolescents and young adults generally are at a developmental stage that involves various life-related changes, such as education, employment, and formation of identity and relationships, as well as differentiation from family. As adolescent cancer survivors progress through life changes, they may be at a vulnerable developmental period as they not only have to deal with the normal developmental tasks, but also have to grapple with the consequences of cancer. Survivors’ experiences with cancer and treatments may bring disruptions and changes, as well as pose challenges, within these spheres of their lives (Barrera, Shaw, Speechley, Maunsell, & Pogany, 2005; Langeveld et al., 2002; Long & Marsland, 2011; Zebrack et al., 2007). Studies that focused on quality of life (QoL) among survivors have reported mixed findings. Some studies have observed that most childhood cancer survivors (CCS) are psychologically healthy and scored within the normal range on standardized psychometric measures of distress and QoL (Zebrack et al., 2007; Zeltzer et al., 2009). Other studies have reported that survivors generally exhibit symptoms of psychological distress or social and behavioral challenges (Gurney et al., 2009), but the risks factors for these symptoms and challenges are not much different from those observed in the general population. Past studies have also reported that survivors are at risk for various late effects, such as second malignancy, negative impacts on growth and fertility, or premature major illness (Langeveld, Grootenhuis, Voûte, de Haan, & van den Bos, 2004), which can pose a threat to the future expectations of adolescent cancer survivors. This can negatively influence survivors’ major decisions regarding career, marriage, or starting a family. As adolescents and young adults have many years ahead of them, these are important factors that need to be explored and investigated. The relevant issues observed in past studies include difficulties in forming social relationships, sexual dysfunction, and being less likely to marry compared with their siblings (Evan, Kaufman, Cook, & Zeltzer, 2006). These issues in turn may have an impact on their self-esteem in terms of how much they value or like themselves. In Singapore, a few studies have been conducted on CCS. Most of these studies have generally explored and investigated the impact of cancer on the family and caregivers in terms of financial hardships (Aung et al., 2012; Ng & Ow, 2005) and parental psychosocial needs (Ow, 2003). Aung, Sabai, and Chan (2011) recently investigated the risk of late effects and complications among CCS. However, little is known about how the survivors perceive the impact of cancer on their QoL, or its psychological and social dimensions. The aim of this study was to investigate the needs and adjustment of adolescent and young adult CCS and the perceived impact of cancer on their QoL, self-esteem, and future expectations. Method Study Design and Participants Participants were recruited from a cancer support organization. Initially 129 adolescent and young adult CCS were contacted through face-to-face meetings and by mail. Eventually, 68 (52.7 percent) responded and agreed to participate in this study. All those who agreed to participate were provided with information about the study and were assured of confidentiality and the voluntary nature of participation. Written consent was obtained from all participants. Human subject ethics approval was obtained from the institutional review board, prior to data collection from May to October 2015 through the use of survey questionnaires. Study Instruments QoL The 41-item Quality of Life–Cancer Survivor Scale (Ferrell, Dow, & Grant, 1995) was used to assess QoL in four domains: physical well-being (8 items), psychological well-being (18 items), social well-being (8 items), and spiritual well-being (7 items). Items were scored from 0 to 10 for each item. The scale items are worded such that for some items 0 indicates the worst impact on their life and 10 indicates the best impact on their life; for other items the scores are reversed so that 0 indicates the best impact and 10 indicates the worst impact. The overall QoL sum is derived by computing the 41 items. However, four items—menstrual/fertility change, impact on sexuality, employment, and financial burden—were not included in the analysis because more than 60 percent of respondents left these items blank or answered “not applicable.” Scores were also computed for each of the four subscales to obtain an overall score for each of the four QoL domains. Self-esteem Rosenberg’s 10-item Self-Esteem Scale (Rosenberg, 1965) was used to assess general feelings of self-acceptance and self-esteem. Items were scored on a four-point Likert scale ranging from 1 = strongly disagree to 4 = strongly agree. The scoring direction for five negatively worded items was reversed, so that higher scores represent higher self-esteem. Future Life Expectation To assess the level of future life expectation, participants completed the 13-item Future Expectation Scale (Bush, Mandel, & Giardina, 1998). Items were scored on a five-point Likert scale. Scale items are worded such that 1 indicates the lowest expectation and 5 indicates highest expectation toward the future; for other items, 5 indicates the lowest expectation and 1 indicates the highest expectation of achieving future tasks. The total score is tabulated by summing all the item scores, so that higher scores indicate higher future expectations. Cancer-Related Health Worries To assess concerns and worries about cancer-specific and health-related worries, a nine-item Worry Scale (Weigers, Chesler, Zebrack, & Goldman, 1998) was administered to participants. The scale comprises items that assess both cancer-specific (five items) and general-health (four items) worries that are often reported as common medical and psychosocial sequelae of childhood cancer. Items are scored on a four-point Likert scale ranging from 1 = never worry to 4 = worry a lot, with higher scores indicating more worries. Demographic Information Participants also completed a demographic information sheet on age, gender, educational level, relationship status, age at time of diagnosis, time since completion of treatment, and type of cancer diagnosis. Data Analysis To examine the relationships among the study variables, we conducted correlation analyses and assessed the strength and directions of the associations between participants’ personal characteristics, cancer-specific worries, health-specific worries, self-esteem, future expectations, and the outcome measure of QoL. One-way analyses of variances were performed for comparison between and within groups (for example by age group, gender). To investigate which factor predicts survivors’ QoL, multiple regression analysis was performed with a stepwise forward selection strategy with QoL as the outcome variable. For each regression, the explained variance (R2) was estimated. Due to the high correlations between age at time of diagnosis and years since completion of treatment (r = –.70, p < .01), years since completion of treatment was not included in the regression analyses to avoid the issue of multicollinearity. Results Participant Characteristics Information about the participants’ characteristics is presented in Table 1. Participants’ ages range from 12 to 24 (mean age = 17.2), of whom 62 percent (n = 42) are male. About 46 percent were in secondary grades. Age at the time of first diagnosis ranged from one to 18 years (median 10 years), and the range of time since completion of treatment was three months to 15 years (median six years). Table 1: Sample Characteristics Variable n (%) Gender Male 42 (62.0) Female 26 (38.0) Educational level Primary 1 (1.5) Secondary 31 (45.6) Postsecondary 12 (17.6) Polytechnic 10 (14.7) Professional/diploma 2 (2.9) University 8 (11.8) Missing value 4 (5.9) Age at time of survey (years) 12–13 15 (22.0) 14–16 14 (20.6) 17–21 25 (36.8) ≥22 14 (20.6) Age at time of diagnosis (years) ≤5 20 (29.4) 6–12 years 31 (45.6) 13–18 years 16 (23.5) Missing 1 (1.5) Time since completion of treatment (months) 3–12 4 (5.9) 13–36 11 (16.1) 37–60 12 (17.5) 61–120 21 (31.0) ≥120 20 (29.5) Variable n (%) Gender Male 42 (62.0) Female 26 (38.0) Educational level Primary 1 (1.5) Secondary 31 (45.6) Postsecondary 12 (17.6) Polytechnic 10 (14.7) Professional/diploma 2 (2.9) University 8 (11.8) Missing value 4 (5.9) Age at time of survey (years) 12–13 15 (22.0) 14–16 14 (20.6) 17–21 25 (36.8) ≥22 14 (20.6) Age at time of diagnosis (years) ≤5 20 (29.4) 6–12 years 31 (45.6) 13–18 years 16 (23.5) Missing 1 (1.5) Time since completion of treatment (months) 3–12 4 (5.9) 13–36 11 (16.1) 37–60 12 (17.5) 61–120 21 (31.0) ≥120 20 (29.5) Descriptive Statistics of the Study Variables The mean and standard deviations of the study variables are reported in Table 2. The overall mean score for the 37-item QoL scale is 5.28 (SD = 0.78). Among the QoL domains, the spiritual subscale (M = 6.42) ranked highest, and the physical subscale reported the lowest mean score (M = 4.55). Cronbach’s alpha for the overall QoL in this study is .70, and for the subscales it ranges from .66 to .89. In the physical domain, individual scale items such as fatigue, aches, and pain showed lower mean score, indicating that these factors have the worst impact on QoL in the physical domain. In the psychological domain, higher mean scores were observed for scale items such as fear of relapse and fear that cancer might spread. For the social domain of QoL, survivors reported lower mean scores on items such as perceived impact of their illness causing family distress and feeling isolated. Among the items on the spiritual subscale, higher mean scores were observed for items such as positive life changes, sense of purpose, and feeling hopeful for the future. Items measuring feelings of uncertainty about the future had the lowest mean scores. Table 2: Bivariate Correlations among the Study Variables M (SD) 1 2 3 4 5 6 7 8 9 10 11 12 1 QoL overall 5.28 (0.78) 1 2 QoL-Phys 4.55 (145) .65** 1 3 QoL-Psyc 5.27 (1.07) .92** .47** 1 4 QoL-Social 4.75 (1.45) .67** .61** .54** 1 5 QoL-Spiritual 6.42 (1.52) –.14 –.55** –.23 –.55** 1 6 Fut Exp 3.80 (0.66) .13 .03 .10 –.06 .17 1 7 Self-Esteem 2.89 (0.40) .13 .01 .08 –.22 .39** .63** 1 8 Worry-C 2.19 (0.97) –.30** –.28* –.37** –.32** –.39** –.25* –.41** 1 9 Worry-G 1.97 (0.74) –.07 .13 .06 .12 –.12 –.24* –.21 .31** 1 10 Age .16 .01 .16 .26* –.07 –.12 –.24* .34** –.05 1 11 Age-D .33** .28* .27* .43** –.21 –.08 –.09 .25* .02 .35* 1 12 Time-C –.31* –.35** –.24 –.36** .19 .06 –.08 –.03 –.05 .21 –.70** 1 M (SD) 1 2 3 4 5 6 7 8 9 10 11 12 1 QoL overall 5.28 (0.78) 1 2 QoL-Phys 4.55 (145) .65** 1 3 QoL-Psyc 5.27 (1.07) .92** .47** 1 4 QoL-Social 4.75 (1.45) .67** .61** .54** 1 5 QoL-Spiritual 6.42 (1.52) –.14 –.55** –.23 –.55** 1 6 Fut Exp 3.80 (0.66) .13 .03 .10 –.06 .17 1 7 Self-Esteem 2.89 (0.40) .13 .01 .08 –.22 .39** .63** 1 8 Worry-C 2.19 (0.97) –.30** –.28* –.37** –.32** –.39** –.25* –.41** 1 9 Worry-G 1.97 (0.74) –.07 .13 .06 .12 –.12 –.24* –.21 .31** 1 10 Age .16 .01 .16 .26* –.07 –.12 –.24* .34** –.05 1 11 Age-D .33** .28* .27* .43** –.21 –.08 –.09 .25* .02 .35* 1 12 Time-C –.31* –.35** –.24 –.36** .19 .06 –.08 –.03 –.05 .21 –.70** 1 Notes: QoL = quality of life; Phys = physical domain; Psyc = psychological domain; Social = social domain; Spiritual = spiritual domain; Fut Exp = future expectation; Worry-C = worries, cancer specific; Worry-G = worries, general health; Age-D = age at time of first diagnosis; Time-C = time since completion of treatment. *p < .05. ***p < .01. The overall mean score for future expectation was 3.80. Among the scale items, higher scores were observed for items such as future expectation of having a career (M = 4.0) and expectation to reach future goals (M = 4.0). Lower mean scores were observed for items pertaining to future expectation of becoming a parent (M = 3.38) and having a child in the future (M = 3.65). In this study, Cronbach’s alpha for this scale was .86. Participants’ mean score on self-esteem was 2.89 (SD = 0.40). Reliability and validity studies have reported Cronbach’s alphas in the range of .77 to .88 (for example, Bartoces et al., 2009; Langeveld et al., 2004). The present study reported a Cronbach’s alpha of .85. The overall mean score for cancer-specific worry was 2.19 (SD = 0.97); it was 1.97 (SD = 0.74) for health-related concerns. Concerns about getting another cancer (M = 2.42) and having a relapse (M = 2.3) top the list of survivors’ cancer-specific concerns. About 47 percent were reportedly worried about having a relapse, and 40 percent reported moderate levels of concern about getting another cancer sometime in the future. Among the general health-related worries, participants reported higher concerns about being as healthy as others their own age (M = 2.03). Cronbach’s alpha of the scale in this study was .80. Bivariate Correlation Analysis Observation of the bivariate correlations among the study variables presented in Table 2 revealed significant negative association between overall QoL and cancer-specific worries (r = –.30, p < .05). Within the QoL subscale, the strongest association was with the psychological domain (r = –.37, p < .01) and the social domain (r = –.39, p < .01); there was a moderate association with the spiritual domain (r = –.25, p < .05) and physical domain (r = –.28, p < .05). Self-esteem was positively correlated with the spiritual domain of QoL (r = .39, p < .01) and negatively correlated with age (r = –.24, p < . 05). A one-way analysis of variance revealed that survivors in the 14 to 16 years age group reported the highest mean scores on self-esteem relative to other age groups [F(3, 63) = 4.88, p < . 01]. Time since completion of treatment was negatively correlated with overall QoL (r = –.31, p < .01). Survivors’ future expectations were significantly positively correlated with self-esteem (r = .63, p < . 01) and negatively correlated with cancer-specific worry (r = –.25, p < .05), whereas general-health issues (r = –.24, p < .05) were negatively correlated with lower self-esteem. Regression Analyses Whereas the bivariate correlation analysis provides a preliminary picture of the factors that explain QoL among the participants, multiple regression analyses help to identify the net effects of each predictor, controlling for other predictors and covariates. Table 3 provides the standardized regression coefficient (β) and the related p values for each of the outcome variables. Table 3: Multiple Regression Analyses to Explain Survivors’ Quality of Life (QoL) Physical Subscale Psychological Subscale Social Subscale Spiritual Subscale Overall QoL β β β β β Demographics Age –.12 .13 .13 –.03 .06 Age at diagnosis .33* .22 .38** –.19 .30* Psychosocial variables Self-esteem –.04 .11 –.24 .48** .30 Future expectation .04 .07 .11 –.12 .05 Worries Cancer specific .32* .43** .16 –.28* .35* Health related .09 .03 .10 .01 .03 R2 .20 .25 .27 .26 .26 Adjusted R2 .11* .18** .20 .18 .18* Physical Subscale Psychological Subscale Social Subscale Spiritual Subscale Overall QoL β β β β β Demographics Age –.12 .13 .13 –.03 .06 Age at diagnosis .33* .22 .38** –.19 .30* Psychosocial variables Self-esteem –.04 .11 –.24 .48** .30 Future expectation .04 .07 .11 –.12 .05 Worries Cancer specific .32* .43** .16 –.28* .35* Health related .09 .03 .10 .01 .03 R2 .20 .25 .27 .26 .26 Adjusted R2 .11* .18** .20 .18 .18* *p < .05. **p < .01. For the outcomes of QoL, results shows that age at time of diagnosis is a significant predictor of overall QoL (β = 0.30, p < .05), most specifically for the social domain (β = 0.38, p < . 01) and moderately for the physical domain (β = 0.33, p < .05). Among the psychosocial variables, self-esteem emerged as an important predictor of the social domain of QoL (β = 0.48, p < .01). Cancer-specific worry was a significant predictor for overall QoL (β = –0.35, p < .05). Among the subscales, cancer-specific worry significantly predicted the psychological domain of QoL (β = –0.43, p < .01), the physical domain (β = –0.32, p < .05), and the spiritual domain (β = –0.28, p < .05) of QoL. In total, the full model explained 18 percent of the variance in overall QoL. Discussion The present study investigated QoL, self-esteem, future expectations, and cancer and health-related worries among a sample of adolescent and young adult survivors of cancer. Results show that survivors rated their spiritual QoL the highest and their physical life quality the lowest. Although the majority of survivors (95.5 percent) reported that they are not currently under any treatment, the physical symptoms (fatigue, aches, and pain) are still a salient factor that might affect their QoL. In the social domain of QoL, the lower scores on scale items such as social support and family distress indicate that survivors were reportedly concerned about causing distress to their family. Asian culture is collectivist in nature, and, as such, respondents in this study might have felt responsible for causing distress to their family, which could affect their social QoL. Because the study was conducted among respondents of Asian origin, it might add to the knowledge of the psychoemotional states of young adult survivors if future studies could look at whether the concerns about causing family distress are a reflection of the Asian collectivistic approach to family roles and responsibilities (Ow & Katz, 1999). Survivors rated spirituality and religion as having the highest impact on their spiritual QoL. Feeling hopeful, having a sense of purpose, and the perceived impact of cancer as a positive life change were important aspects of the spiritual domain of QoL. This reflects a coping behavior that involves a meaning-making process to make sense of their experience. Prior studies have also reported the beneficial relationship between spirituality and QoL and coping with illness (Puchalski, 2013; Smorti, 2015; Zebrack & Chesler, 2002), which play a critical role in how survivors cope with their diagnosis and illness. In this study, survivors reported moderate levels of self-esteem, with those 14 to 16 years of age reporting higher mean scores on self-esteem relative to other age groups. Previous studies have reported that adolescent cancer survivors manifest considerable self-worth and resilience despite their illness (Rowland & Baker, 2005). However, the importance of self-esteem among young adults (that is, those age 17 years and above) should not be underestimated as they may be in need of more help and support. Clinical care should therefore also incorporate psychological components such as interpersonal and problem-solving skills to enhance self-esteem among young adult cancer survivors. The finding that survivors have lower future expectations with regard to having children and raising a family is also consistent with past studies among cancer survivors who report being worried about their reproductive capacity (Langeveld et al., 2002; Weigers et al., 1998). A side effect of some cancer treatments is infertility, so the lower expectations of survivors in this area are not surprising. It was expected that cancer-specific and health-related worries would correlate with future life expectations. The significant negative association between future expectations and cancer-specific and general-health worries suggests a picture of how cancer-specific worries continue to affect survivors’ QoL. The worries about fears of recurrence or getting a second cancer or having a relapse indicate that for these survivors the cancer experience is still a salient issue that affects their QoL. Survivors reported optimistic future expectations in many areas, such as having a career and future work. Previous studies among CCS have also indicated that most survivors tend to report optimistic expectations toward the future (Smorti, 2015; Zebrack & Chesler, 2002). This might be suggestive of good adaptation of adolescents with cancer, who, having received successful treatment, are more optimistic about the future. It is also probable that the moderate to high optimistic future expectations, combined with the moderate level of self-esteem, suggest that these adolescents tend to be focused on short- and intermediate-term hopes and having positive expectations of attaining them. This probably helps survivors to mobilize their adaptive responses to the diagnosis and to treatment. They might be practicing a form of protective denial by focusing less on the seriousness of their illness and more on manageable concerns or on positive and obtainable life goals. Moreover, the high score on many items of the Future Expectation Scale can present an optimistic bias rather than a true evaluation. Further studies among a larger sample of cancer survivors and healthy groups can help to further extrapolate the current findings. Limitations This study is not without limitations. First, the data were obtained only from one cancer treatment location. Future studies among larger samples, with diversity in terms of gender, age, and cancer treatment location can help to better extrapolate the findings of the present study. Second, the low variance in QoL in the present study indicates that other factors need to be investigated in future research that might affect survivors’ overall QoL. Conclusion Overall, this study has provided seminal information on the needs of young adult cancer survivors in an Asian context. The findings regarding QOL, self-esteem, social support, anxiety about relapse, and the burden of care, especially in the context of the Asian family, can be used to generate more in-depth research questions or hypotheses for future studies concerning young adult cancer survivors among the Asian population in the broader context of any multicultural society. The findings of this study also highlight the need to assess and support self-esteem among cancer survivors as a means of enhancing their QoL, which may be an important step toward using a strengths-based perspective in service provision (Chwalisz & Obasi, 2008). Specific strategies to increase self-esteem, such as coping skills training or support groups, should be explored and evaluated. References Aung, L., Sabai, S. M., & Chan, Y. H. ( 2011). Singapore childhood cancer survivor study: A multi-institutional collaborative study on long-term survivors of childhood cancer. European Journal of Cancer Supplements, 9( 1), 1– 23. Aung, L., Saw, S. M., Chan, Y. H., Khaing, T., Quah, T. C., & Verkooijen, H. M. ( 2012). The hidden impact of childhood cancer on the family: A multi-institutional study from Singapore. Annals of the Academy of Medicine, Singapore, 41( 4), 170– 175. Barrera, M., Shaw, A. K., Speechley, K. N., Maunsell, E., & Pogany, L. ( 2005). 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Published: Feb 1, 2018
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