bs_bs_banner
Pediatrics International (2015) 57, 239–246
doi: 10.1111/ped.12495
Original Article
Psychosocial difficulties in adolescent and young adult survivors of childhood cancer Yuko Takei,1 Akiko Ogata,3 Miwa Ozawa,4 Hiroshi Moritake,2 Kei Hirai,5 Atsushi Manabe4 and Shin-ichi Suzuki6 1 Faculty of Medicine, University of Miyazaki Hospital, 2Division of Pediatrics, Department of Reproductive and Developmental Medicine, Faculty of Medicine, University of Miyazaki, Miyazaki, 3Faculty of Education, Hiroshima University, Hiroshima, 4Department of Pediatrics, St Luke’s International Hospital, Tokyo, 5Center for the Study of Communication Design, Graduate School of Human Sciences and Graduate School of Medicine, Osaka University, Osaka and 6Faculty of Human Sciences, Waseda University, Saitama, Japan Abstract
Background: With a large number of children surviving cancer worldwide, numerous investigations have assessed psychological and social adjustment among childhood cancer survivors. According to these studies, it is unclear whether childhood cancer survivors successfully adjust to daily life after being discharged from hospital, especially for adolescent and young adult survivors who have unique needs and concerns. The primary aim of this study was to identify the factors underlying psychosocial difficulties faced by adolescent and young adult survivors in their day-to-day lives after being discharged from hospital. Methods: Semi-structured interviews were conducted. Twenty-five childhood cancer survivors were recruited from two regional cancer institutions in Japan. Content analysis was applied to the responses. Results: Nineteen attributes were extracted and classified into four categories as follows: physical difficulties, interpersonal difficulties, behavioral difficulties, and uncertainty about the future. The attributes indicated by >50% of the participants were “I am worried about not feeling well,” “I have difficulty continuing treatment in daily life,” “I have difficulty moving my body,” “I have to be absent from school or work because of illness,” and “I am left behind academically.” Conclusions: This study identified important factors of psychosocial day-to-day difficulties. Clinically, these results suggest that it is important to watch for these signs and to provide early support to survivors so that their daily life and development are not hindered by the treatment and its side-effects, and to offer long-term support focusing on individual patient characteristics such as sex, age, and cancer history.
Key words adolescent, cancer, psychosocial difficulty, survivor, young adult.
With a large number of children surviving cancer worldwide,1 there are now many survivors who experience residual physical, behavioral, emotional, or social sequelae associated with the disease or its treatment.2 Numerous studies have documented an increased occurrence of psychosocial problems in childhood cancer survivors.3–5 In contrast, other studies have suggested normal psychosocial adjustment of survivors with only minor problems and differences relative to healthy controls.6,7 These discrepancies could be attributed to methodological differences and heterogeneous survivor subject groups.6,8 Much of the literature regarding children’s experiences of cancer report the results of generic measures of psychiatric symptoms by parents and the health-care team treating the children.9 It cannot be assumed that reports from parents or the health-care team accurately reflect the views of the children.10 Although the Correspondence: Yuko Takei, PhD, Faculty of Medicine, University of Miyazaki Hospital 5200, Kihara, Kiyotake-cho, Miyazaki 889-1692, Japan. Email: [email protected] Received 15 October 2013; revised 20 July 2014; accepted 21 August 2014.
© 2014 Japan Pediatric Society
inherent structure of generic measures assessing psychiatric symptoms provides a method to standardize results when comparing treatments, this structure also imposes the researchers’ theories and generalizations onto the patients and limits the ability of patients to freely express their concerns and feelings.9,11 Qualitative methodologies have therefore been used to obtain in-depth information regarding the cancer experience from the children’s perspectives.12 Many previous studies of childhood cancer survivors covered a wide range of ages. The psychosocial difficulties that survivors face, however, may vary according to age. This is particularly true for adolescents and young adults who have unique needs and concerns when compared with more traditional pediatric or adult cancer patients.13 Specifically, they must move through developmental processes such as establishing self-image and identity, sexual roles, capacity for intimacy, economic and emotional autonomy, and educational and career planning while coping with the emotional impact of the diagnosis, the treatment for cancer, and the emotional, social, and physical late effects of the disease and its treatment.14,15 Relatively few studies, however,
240
Y Takei et al.
have assessed the issues of particular concern to adolescent and young adult survivors of childhood cancer, including the effects of cancer and cancer treatment on daily life. The primary aim of this study was to identify the factors of psychosocial difficulties faced by childhood cancer survivors in their daily lives after being discharged from hospital, through qualitative interviews with adolescent and young adult survivors of childhood cancer.
Methods Participants
Participants were childhood cancer survivors under follow-up hospital care at a private hospital in the capital area and a regional national hospital in Japan between December 2008 and October 2009. The criteria for inclusion in this study were as follows: (i) attendance at pediatric outpatient clinics in Japan; (ii) diagnosis of childhood cancer; (iii) awareness of the diagnosis of their disease, and (iv) between the ages of 13 and 29 years old at the time of the survey. Survivors with cognitive impairments were excluded. The researcher explained the purpose and method of the study in detail and obtained written informed consent from all the participants. The institutional review boards of the research institutions approved this study.
cialist in pediatrics they carefully conceptualized and categorized the attributes of the transcripts on the basis of similarities and differences in the content. Definitions for all categorized attributes were then constructed. Finally, two pairs of coders among the students of clinical psychology independently determined how each TU corresponded with each category. When their coding was inconsistent, they discussed and made a final judgment. The concordance rate and Kappa coefficient of the determinations of the categories by the four independent coders were 75.3% and 0.63, respectively. Furthermore, generated attributes were categorized into more abstracted supracategories according to similarities and theoretical explanations after receiving the authors’ consent. In addition, we conducted descriptive analyses on attribute frequencies. The frequencies of the supracategories were counted by combining the frequencies of their attributes. We compared the participants on the basis of sex, age at diagnosis, time since diagnosis, type of cancer, type of treatment, the experience of recurrence, and treatment facility, using either Pearson’s chisquared test or Fisher’s exact test as appropriate. We used Fisher’s exact test if the cells had an expected count 50% of the participants were “I am worried about not feeling well,” “I have difficulty continuing treatment in daily life,” “I have difficulty moving my body,” “I have to be absent from school or work because of illness,” and “I am left behind academically.” Table 2 lists the frequencies and percentages of 19 attributes of the participants’ sex, age at diagnosis, time since diagnosis, type of cancer, type of treatment, experience of recurrence, and treatment facility. Male participants were significantly more likely than female participants to respond to the attribute “I will be limited in future activities (e.g. academia, work, marriage)” (P < 0.01). Survivors who had been diagnosed when they were older had a statistically higher frequency of “Cancer nullifies my appearance” than those who had been diagnosed when they were younger (P < 0.05). Survivors who were diagnosed >10 years ago had the highest frequency in the responses on the attributes of “People fail to recognize cancer” among all the survivors (P < 0.05). Regarding treatment, survivors who had received radiation therapy had a statistically higher frequency of “I am left behind academically” than those who had not received radiation therapy (P < 0.01). Survivors who had undergone surgery had a statistically higher frequency of “People treat me differently after they find out I have had cancer (P < 0.05)” and “I have difficulty participating in school events” (P < 0.05) than those who had not had surgery. Regarding the experience of recurrence, survivors who had relapsed cancer had a statistically higher frequency of “People treat me differently after they find out I have had cancer” (P < 0.05) than those who had not had relapsed cancer. Regarding type of cancer, experience of transplant, and treatment facility, there were no statistical differences.
Discussion This study was an exploratory study to identify the psychosocial difficulties faced by adolescent and young adult survivors of childhood cancer in their daily lives after being discharged from hospital. We were able to identify 19 attributes and four categories as the common factors of these psychosocial difficulties. There are four important findings from these results. First, the foremost obstacle that survivors face once they are discharged from hospital is the physical and behavioral problems resulting from the treatment and its side-effects. In agreement with previous studies, we found that most of the survivors suffered treatment side-effects, which often involved painful procedures.19–21 Survivors also returned to school without hair, or with amputations, scars, weight gain, or other visible signs of illness. Unlike their lives at hospital, survivors had to be involved in daily activities such as studying, working, and going out with friends while dealing with the side-effects of treatment. The survivors may be disappointed with their lives after being discharged because they may have believed that they could return to the lives they lived before the illness.22 Some studies using generic measures have also reported worse outcomes for anxiety, depression, social competence, and self-esteem for childhood cancer survivors.23,24 Other descriptive studies noted a lower level of education status, employment status, and marital status.20,25 Previous studies in Japan have also suggested that childhood © 2014 Japan Pediatric Society
© 2014 Japan Pediatric Society
Physical difficulties 1 I am worried about not feeling well. 2 I have difficulty continuing treatment in daily life. 3 I feel weakening of my physical and muscle strength. 4 I feel sad about losing my hair because of treatment. 5 Cancer nullifies my appearance. 6 Cancer predisposes me to an infection or cold. Interpersonal difficulties 7 I feel left out from my friends’ lives or activities. 8 People treat me differently after they find out I have had cancer. 9 I wonder how to tell friends that I have had cancer, 10 People fail to recognize cancer. 11 I hate to watch and read tragic stories related to cancer. Behavioral difficulties 12 I have difficulty moving my body. 13 I have to be absent from school or work because of illness. 14 I am left behind academically. 15 I have difficulty participating in school events. 16 I have great difficulty climbing stairs and getting around. Uncertainty about the future 17 I am worried about having a recurrence. 18 I will be limited in future activities (e.g. academia, work, marriage). 19 Having had cancer makes me feel unsure about my future.
Items
Table 2 Psychosocial difficulties vs childhood cancer survivor characteristics
60 52 48 44 28 24 48 28 24 24 20 80 52 52 48 32 44 36 28
12 7 6 6 5 20 13 13 12 8 11 9 7
%
15 13 12 11 7 6
n
Total (n = 25)
3 6 2
7 4 3 4 5
3 4 2 0 0
4 2 3 3 2 1
n
38 75 25
88 50 38 50 63
38 50 25 0 0
50 25 38 38 25 13
%
Male (n = 8)
8 3 5
13 9 10 8 3
9 3 4 6 5
11 11 9 8 5 5
n
47 18 29
76 53 59 47 18
53 18 24 35 29
65 65 53 47 29 29
%
Female (n = 17)
Sex
1.00 0.01 1.00
1.00 1.00 0.41 1.00 0.06
0.67 0.16 1.00 0.13 0.14
0.67 0.10 0.67 1.00 1.00 0.62
P
6 4 4
10 5 6 5 3
7 3 3 3 3
8 8 5 5 1 2
n
43 29 29
71 36 43 36 21
50 21 21 21 21
57 57 36 36 7 14
%
Below average (n = 14)
5 5 3
10 8 7 7 5
5 4 3 3 2
7 5 7 6 6 4
n
45 45 27
91 73 64 64 45
45 36 27 27 18
64 45 64 55 55 36
%
Above average (n = 11)
Age at diagnosis
1.00 0.43 1.00
0.34 0.11 0.43 0.24 0.39
1.00 0.66 1.00 1.00 1.00
1.00 0.70 0.24 0.44 0.02 0.35
P
242 Y Takei et al.
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Items
n 4 3 5 2 2 1 3 2 2 2 0 7 5 6 5 4 3 3 2
% 57 43 57 29 29 14 43 29 29 29 0 100 71 86 71 57 43 43 29
n 5 4 3 5 4 3 4 2 1 0 2 7 4 4 4 3 3 3 2
% 56 44 33 56 44 33 44 22 11 0 22 78 44 44 44 33 33 33 22
5–9 (n = 9)
n 6 6 5 4 1 2 5 3 3 5 3 6 4 3 3 1 5 3 3
% 67 67 56 44 11 22 56 33 33 56 33 67 44 33 33 11 56 33 33
10–15 (n = 9)
Time since diagnosis (years)
0–4 (n = 7) 1.00 0.68 0.68 0.54 0.30 0.85 1.00 1.00 0.61 0.02 0.37 0.37 0.54 0.13 0.38 0.18 0.88 1.00 1.00
P n 11 11 9 8 4 4 11 3 3 5 4 15 10 11 8 5 8 5 5
% 61 61 50 44 22 22 61 17 17 28 22 83 56 61 44 28 44 28 28
Leukemia (n = 18) n 3 2 3 2 3 2 0 2 2 1 1 3 2 1 2 2 2 2 1
% 75 50 75 50 75 50 0 50 50 25 25 75 50 25 50 50 50 50 25
n 1 0 0 1 0 0 1 1 1 0 0 2 1 1 2 1 1 2 1
% 33 0 0 33 0 0 33 33 33 0 0 67 33 33 67 33 33 67 33
Bone tumor (n = 3)
Type of cancer Lymphoma (n = 4) 0.66 0.20 0.24 1.00 0.07 0.35 0.06 0.25 0.25 0.79 1.00 0.77 0.83 0.37 0.83 0.79 1.00 0.36 1.00
P n 4 2 4 4 3 3 2 3 3 2 1 6 6 5 3 0 2 2 2
% 67 33 67 67 50 50 33 50 50 33 17 100 100 31 50 0 33 33 33
Yes (n = 6) n 11 11 8 7 4 3 10 4 3 4 4 14 7 8 9 8 9 7 5
% 58 58 42 37 21 16 53 21 16 21 21 74 37 42 47 42 47 37 26
No (n = 19)
Radiation
0.55 0.28 0.28 0.21 0.19 0.13 0.36 0.19 0.13 0.45 0.66 0.22 0.01 0.09 0.64 0.07 0.45 0.64 0.56
P n 3 1 2 1 2 1 1 3 3 1 0 4 3 2 4 2 1 3 2
% 75 25 50 25 50 25 25 75 75 25 0 100 75 50 100 50 25 75 50
Yes (n = 4)
n 12 12 10 10 5 5 11 4 3 5 5 16 10 11 8 6 10 6 5
% 57 57 48 48 24 24 52 19 14 24 24 76 48 52 38 29 48 29 24
No (n = 21)
Surgery
0.47 0.27 0.67 0.40 0.31 0.69 0.33 0.06 0.03 0.69 0.38 0.38 0.33 0.67 0.04 0.38 0.40 0.12 0.31
P
Psychosocial difficulties in AYA 243
© 2014 Japan Pediatric Society
© 2014 Japan Pediatric Society
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Items
n 1 2 1 2 1 0 2 1 0 0 0 2 1 1 1 0 0 1 1
% 50 100 50 100 50 0 100 50 0 0 0 100 50 50 50 0 0 50 50
Yes (n = 2)
Table 2 Continued
n 14 11 11 9 6 6 10 6 6 6 5 18 12 12 11 8 11 8 6
No (n = 23)
Transplant
% 61 48 48 39 26 26 43 26 26 26 22 78 52 52 48 35 48 35 26 0.65 0.26 0.74 0.18 0.49 0.57 0.22 0.49 0.57 0.57 0.63 0.63 0.74 0.74 0.74 0.45 0.30 0.60 0.49
P n 2 2 3 2 2 1 2 3 1 0 0 4 2 2 2 1 0 2 1
% 50 50 75 50 50 25 50 75 25 0 −0 100 50 50 50 25 0 50 25
Yes (n = 4) n 12 11 9 9 5 5 10 4 5 6 5 16 11 11 10 7 11 7 6
No (n = 21)
Recurrence
% 57 52 43 43 24 24 48 19 24 29 24 76 52 52 48 33 52 33 29 0.53 0.67 0.27 0.60 0.31 0.69 0.67 0.05 0.69 0.31 0.38 0.38 0.67 0.67 0.67 0.62 0.08 0.46 0.69
P n 6 4 7 3 2 3 4 4 4 4 3 7 6 5 4 4 3 3 2
% 60 40 70 30 20 30 40 40 40 40 30 70 60 50 40 40 30 30 20
Capital area (n = 10)
n 9 9 5 8 5 3 8 3 2 2 2 13 7 8 8 4 8 6 5
% 60 60 33 53 33 20 53 30 13 13 13 87 47 53 53 27 53 40 33
Rural area (n = 15)
Treatment facility
0.66 0.28 0.08 0.23 0.40 0.46 0.40 0.26 0.15 0.15 0.30 0.30 0.40 0.60 0.40 0.39 0.23 0.47 0.40
P
244 Y Takei et al.
Psychosocial difficulties in AYA cancer survivors experience employment difficulties, low marriage rate, and psychological distress.26,27 The present results indicate that encountering difficulties in daily life as a result of a disease and its treatment may contribute to these unfavorable outcomes. For example, being absent from school because of illness might cause a decline in the ability to learn and thus hinder educational achievement. Changing body image or a decline in physical strength might also lead to low self-esteem. Therefore, it is important to watch for these signs and to provide early support to survivors so that their daily lives are not hindered by cancer treatment and or the side-effects. Second, many difficulties that survivors face might have a considerable effect on development. During the critical developmental transition from childhood to adulthood, young people have typical concerns with establishing identity, developing a positive body image, separating from parents, involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family.28,29 Accordingly, cancer-related difficulties such as changing body image, isolation and alienation from friends, disruptions in social life and school/ employment because of treatment, and health-related concerns about the future may be particularly distressing for adolescents and young adult survivors. It is important to create comprehensive, age-appropriate support that addresses overlapping and unique needs of survivors at this life stage. Third, some differences in the psychological difficulties faced by the survivors in their daily lives depended on survivor characteristics. Boys were likely to have trouble with respect to their present and future activities such as securing a job, and to worry about it; additionally, if they were diagnosed when they were older, they tended to worry more about changes in their body image. Furthermore, the difficulty that a survivor experiences also changes with the kind of medical treatment and experience of recurrence. Clinically, this suggests that it is important to offer support focusing on individual characteristics such as sex, age, and cancer history. Finally, survivors need long-term support. Survivors with a long history of cancer tended to harbor concerns about “People fail to recognize cancer.” This suggests that certain kinds of difficulties may occur at different times. Kazak et al. emphasized the value of age-appropriate resources and peer support.11 Because difficulties may change as survivors grow older, the support provided in the long term should change to meet these shifting needs. In considering these insights, it is important to also note several limitations of the present work. First, the small sample size may have limited the power of the frequency analysis and obscured possible effects detectable with a larger sample size. The analysis adopted minor opinions, however, and the attributes did not have any loopholes, and therefore, the study maintains its credibility. Second, there was also a sampling bias with regard to the specific patient diseases, namely a greater frequency of leukemia. Although patients with leukemia account for the greatest proportion of all childhood cancer patients,30 further research needs to investigate a diversity of cancers, especially given that psychosocial difficulty response patterns differ according to type
245
of cancer.31 Checking for cancer recurrence and late effects are also important. Third, the present participants were assessed at only one time point and provided retrospective reports on their experiences. Prospective investigations could lead to a greater understanding of the adjustment to daily life after being discharged. Fourth, this study explored the details of the psychosocial difficulties that survivors faced, but not the degree. The next step is a quantitative study to examine the association between survivor characteristics and psychosocial difficulties more closely. Conclusions
This exploratory study identified important factors of psychosocial difficulties faced by adolescent and young adult survivors of childhood cancer after being discharged from hospital. Nineteen attributes were extracted and classified into four categories as follows: physical difficulties, interpersonal difficulties, behavioral difficulties, and uncertainty about the future. The time spent receiving cancer treatment may make up a large percentage of a child’s life. These experiences might cause major changes in lifestyle. More attention should be paid to signs of difficulty in daily life, and more support should be provided to insure that their daily lives and development are not hindered by treatment and its side-effects. It is also important to offer long-term support focusing on individual characteristics such as sex, age, and cancer history. This study provides some useful information on recognizing concrete problems and delineating the best direction of support for adolescent and young adult survivors of childhood cancer.
Acknowledgments We express our sincere gratitude to the patients who agreed to share their experiences with us. This study was supported by a Grant-in-aid for Health and Labor Science Research (20220101).
References 1 Dickerman JD. The late effects of childhood cancer therapy. Pediatrics 2007; 119: 554–68. 2 Hawkins MM, Stevens MC. The long-term survivors. Br. Med. Bull. 1996; 52: 898–923. 3 Hudson MM, Mertens AC, Yasui Y et al. Health status of adult long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. JAMA 2003; 290: 1583–92. 4 Meeske KA, Ruccione K, Globe DR et al. Posttraumatic stress, quality of life, and psychological distress in young adult survivors of childhood cancer. Oncol. Nurs. Forum 2001; 28: 481–9. 5 Oeffinger KC, Mertens AC, Sklar CA et al. Chronic health conditions in adult survivors of childhood cancer. N. Engl. J. Med. 2006; 355: 1572–82. 6 Eiser C, Hill JJ, Vance YH. Examining the psychological consequences of surviving childhood cancer: Systematic review as a research method in pediatric psychology. J. Pediatr. Psychol. 2000; 25: 449–60. 7 Langeveld NE, Stam H, Grootenhuis MA et al. Quality of life in young adult survivors of childhood cancer. Support. Care Cancer 2002; 10: 579–600. 8 Stam H, Grootenhuis MA, Last BF. Social and emotional adjustment in young survivors of childhood cancer. Support. Care Cancer 2001; 9: 489–513.
© 2014 Japan Pediatric Society
246
Y Takei et al.
9 Woodgate R. Part I: An introduction to conducting qualitative research in children with cancer. J. Pediatr. Oncol. Nurs. 2000; 17: 192–206. 10 Sawyer LM, Antoniou G, Toogood I et al. A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer. Int. J. Cancer 1999; 12: 39–45. 11 Kazak AE, Rourke MT, Alderfer MA et al. Evidence-based assessment, intervention and psychosocial care in pediatric oncology: A blueprint for comprehensive services across treatment. J. Pediatr. Psychol. 2007; 32: 1099–110. 12 Moody K, Meyer M, Mancuso CA et al. Exploring concerns of children with cancer. Support. Care Cancer 2006; 14: 960–66. 13 Canadian Cancer Society. Canadian Cancer Statistics 2009. Special Topic: Cancer in Adolescence and Young Adults. Canadian Cancer Society, Toronto, 2009. 14 Evan EE, Zeltzer LK. Psychosocial dimensions of cancer in adolescents and young adults. Cancer 2006; 107: 1663–71. 15 Love C, Sabiston CM. Exploring the links between physical activity and posttraumatic growth in young adult cancer survivors. Psychooncology 2011; 20: 278–86. 16 Weber R. Basic Content Analysis. Sage Publications, London, 1990. 17 Hirai K, Miyashita M, Morita T et al. Good death in Japanese cancer care: A qualitative study. J. Pain Symptom Manage. 2006; 31: 140–47. 18 Yoshida S, Otani H, Hirai K et al. A qualitative study of decisionmaking by breast cancer patients about telling their children about their illness. Support. Care Cancer 2009; 18: 439–47. 19 Varni JW, Limbers C, Burwinkle TM. Literature review: Healthrelated quality of life measurement in pediatric oncology: Hearing the voices of the children. J. Pediatr. Psychol. 2007; 32: 1151–63. 20 Mulrooney DA, Dover DC, Li S et al. Twenty years of follow-up among survivors of childhood and young adult acute myeloid leukemia: A report from the childhood cancer survivor study. Cancer 2008; 112: 2071–9.
© 2014 Japan Pediatric Society
21 von Essen L, Enskar K, Kreuger A et al. Self-esteem, depression and anxiety among Swedish children and adolescents on and off cancer treatment. Acta Paediatr. 2000; 89: 229–36. 22 Schwartz CL, Hobbie WL, Constine LS et al., eds. Survivors of Childhood and Adolescent Cancer. A Multidisciplinary Approach, 2nd edn. Springer-Verlag, St Louis, MO, 2005. 23 Servitzoglou M, Papadatou D, Tsiantis I et al. Psychosocial functioning of young adolescent and adult survivors of childhood cancer. Support. Care Cancer 2008; 16: 29–36. 24 Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. J. Cancer Surviv. 2007; 1: 137–45. 25 Langeveld NE, Ubbink MC, Last BF et al. Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psychooncology 2003; 12: 213–25. 26 Asami K, Ishida Y, Sakamoto N. Job discrimination against childhood cancer survivors in Japan: A cross-sectional survey. Pediatr. Int. 2012; 42: 513–21. 27 Ishida Y, Honda M, Kamibeppu K et al. Social outcome and quality of life of childhood cancer survivors in Japan: A crosssectional study on marriage, education, employment and healthrelated QOL (SF-36). Int. J. Hematol. 2011; 93: 633–44. 28 Eiser C, Kuperberg A. Psychological support for adolescents and young adults. In: Bleyer WA, Barr RD (eds). Cancer in Adolescents and Young Adults. Springer Verlag, New York, 2007; 365–73. 29 Zebrack BJ, Chesler MA, Penn A. Psychosocial support. In: Bleyer WA, Barr RD (eds). Cancer in Adolescents and Young Adults. Springer Verlag, New York, 2007; 375–85. 30 Jemal A, Siegel R, Xu J et al. Cancer statistics, 2010. CA Cancer J. Clin. 2010; 60: 277–300. 31 Meeske KA, Patel SK, Palmer SN et al. Factors associated with health-related quality of life in pediatric cancer survivors. Pediatr. Blood Cancer 2007; 49: 298–305.
Copyright of Pediatrics International is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Pediatrics International (2015) 57, 239–246
doi: 10.1111/ped.12495
Original Article
Psychosocial difficulties in adolescent and young adult survivors of childhood cancer Yuko Takei,1 Akiko Ogata,3 Miwa Ozawa,4 Hiroshi Moritake,2 Kei Hirai,5 Atsushi Manabe4 and Shin-ichi Suzuki6 1 Faculty of Medicine, University of Miyazaki Hospital, 2Division of Pediatrics, Department of Reproductive and Developmental Medicine, Faculty of Medicine, University of Miyazaki, Miyazaki, 3Faculty of Education, Hiroshima University, Hiroshima, 4Department of Pediatrics, St Luke’s International Hospital, Tokyo, 5Center for the Study of Communication Design, Graduate School of Human Sciences and Graduate School of Medicine, Osaka University, Osaka and 6Faculty of Human Sciences, Waseda University, Saitama, Japan Abstract
Background: With a large number of children surviving cancer worldwide, numerous investigations have assessed psychological and social adjustment among childhood cancer survivors. According to these studies, it is unclear whether childhood cancer survivors successfully adjust to daily life after being discharged from hospital, especially for adolescent and young adult survivors who have unique needs and concerns. The primary aim of this study was to identify the factors underlying psychosocial difficulties faced by adolescent and young adult survivors in their day-to-day lives after being discharged from hospital. Methods: Semi-structured interviews were conducted. Twenty-five childhood cancer survivors were recruited from two regional cancer institutions in Japan. Content analysis was applied to the responses. Results: Nineteen attributes were extracted and classified into four categories as follows: physical difficulties, interpersonal difficulties, behavioral difficulties, and uncertainty about the future. The attributes indicated by >50% of the participants were “I am worried about not feeling well,” “I have difficulty continuing treatment in daily life,” “I have difficulty moving my body,” “I have to be absent from school or work because of illness,” and “I am left behind academically.” Conclusions: This study identified important factors of psychosocial day-to-day difficulties. Clinically, these results suggest that it is important to watch for these signs and to provide early support to survivors so that their daily life and development are not hindered by the treatment and its side-effects, and to offer long-term support focusing on individual patient characteristics such as sex, age, and cancer history.
Key words adolescent, cancer, psychosocial difficulty, survivor, young adult.
With a large number of children surviving cancer worldwide,1 there are now many survivors who experience residual physical, behavioral, emotional, or social sequelae associated with the disease or its treatment.2 Numerous studies have documented an increased occurrence of psychosocial problems in childhood cancer survivors.3–5 In contrast, other studies have suggested normal psychosocial adjustment of survivors with only minor problems and differences relative to healthy controls.6,7 These discrepancies could be attributed to methodological differences and heterogeneous survivor subject groups.6,8 Much of the literature regarding children’s experiences of cancer report the results of generic measures of psychiatric symptoms by parents and the health-care team treating the children.9 It cannot be assumed that reports from parents or the health-care team accurately reflect the views of the children.10 Although the Correspondence: Yuko Takei, PhD, Faculty of Medicine, University of Miyazaki Hospital 5200, Kihara, Kiyotake-cho, Miyazaki 889-1692, Japan. Email: [email protected] Received 15 October 2013; revised 20 July 2014; accepted 21 August 2014.
© 2014 Japan Pediatric Society
inherent structure of generic measures assessing psychiatric symptoms provides a method to standardize results when comparing treatments, this structure also imposes the researchers’ theories and generalizations onto the patients and limits the ability of patients to freely express their concerns and feelings.9,11 Qualitative methodologies have therefore been used to obtain in-depth information regarding the cancer experience from the children’s perspectives.12 Many previous studies of childhood cancer survivors covered a wide range of ages. The psychosocial difficulties that survivors face, however, may vary according to age. This is particularly true for adolescents and young adults who have unique needs and concerns when compared with more traditional pediatric or adult cancer patients.13 Specifically, they must move through developmental processes such as establishing self-image and identity, sexual roles, capacity for intimacy, economic and emotional autonomy, and educational and career planning while coping with the emotional impact of the diagnosis, the treatment for cancer, and the emotional, social, and physical late effects of the disease and its treatment.14,15 Relatively few studies, however,
240
Y Takei et al.
have assessed the issues of particular concern to adolescent and young adult survivors of childhood cancer, including the effects of cancer and cancer treatment on daily life. The primary aim of this study was to identify the factors of psychosocial difficulties faced by childhood cancer survivors in their daily lives after being discharged from hospital, through qualitative interviews with adolescent and young adult survivors of childhood cancer.
Methods Participants
Participants were childhood cancer survivors under follow-up hospital care at a private hospital in the capital area and a regional national hospital in Japan between December 2008 and October 2009. The criteria for inclusion in this study were as follows: (i) attendance at pediatric outpatient clinics in Japan; (ii) diagnosis of childhood cancer; (iii) awareness of the diagnosis of their disease, and (iv) between the ages of 13 and 29 years old at the time of the survey. Survivors with cognitive impairments were excluded. The researcher explained the purpose and method of the study in detail and obtained written informed consent from all the participants. The institutional review boards of the research institutions approved this study.
cialist in pediatrics they carefully conceptualized and categorized the attributes of the transcripts on the basis of similarities and differences in the content. Definitions for all categorized attributes were then constructed. Finally, two pairs of coders among the students of clinical psychology independently determined how each TU corresponded with each category. When their coding was inconsistent, they discussed and made a final judgment. The concordance rate and Kappa coefficient of the determinations of the categories by the four independent coders were 75.3% and 0.63, respectively. Furthermore, generated attributes were categorized into more abstracted supracategories according to similarities and theoretical explanations after receiving the authors’ consent. In addition, we conducted descriptive analyses on attribute frequencies. The frequencies of the supracategories were counted by combining the frequencies of their attributes. We compared the participants on the basis of sex, age at diagnosis, time since diagnosis, type of cancer, type of treatment, the experience of recurrence, and treatment facility, using either Pearson’s chisquared test or Fisher’s exact test as appropriate. We used Fisher’s exact test if the cells had an expected count 50% of the participants were “I am worried about not feeling well,” “I have difficulty continuing treatment in daily life,” “I have difficulty moving my body,” “I have to be absent from school or work because of illness,” and “I am left behind academically.” Table 2 lists the frequencies and percentages of 19 attributes of the participants’ sex, age at diagnosis, time since diagnosis, type of cancer, type of treatment, experience of recurrence, and treatment facility. Male participants were significantly more likely than female participants to respond to the attribute “I will be limited in future activities (e.g. academia, work, marriage)” (P < 0.01). Survivors who had been diagnosed when they were older had a statistically higher frequency of “Cancer nullifies my appearance” than those who had been diagnosed when they were younger (P < 0.05). Survivors who were diagnosed >10 years ago had the highest frequency in the responses on the attributes of “People fail to recognize cancer” among all the survivors (P < 0.05). Regarding treatment, survivors who had received radiation therapy had a statistically higher frequency of “I am left behind academically” than those who had not received radiation therapy (P < 0.01). Survivors who had undergone surgery had a statistically higher frequency of “People treat me differently after they find out I have had cancer (P < 0.05)” and “I have difficulty participating in school events” (P < 0.05) than those who had not had surgery. Regarding the experience of recurrence, survivors who had relapsed cancer had a statistically higher frequency of “People treat me differently after they find out I have had cancer” (P < 0.05) than those who had not had relapsed cancer. Regarding type of cancer, experience of transplant, and treatment facility, there were no statistical differences.
Discussion This study was an exploratory study to identify the psychosocial difficulties faced by adolescent and young adult survivors of childhood cancer in their daily lives after being discharged from hospital. We were able to identify 19 attributes and four categories as the common factors of these psychosocial difficulties. There are four important findings from these results. First, the foremost obstacle that survivors face once they are discharged from hospital is the physical and behavioral problems resulting from the treatment and its side-effects. In agreement with previous studies, we found that most of the survivors suffered treatment side-effects, which often involved painful procedures.19–21 Survivors also returned to school without hair, or with amputations, scars, weight gain, or other visible signs of illness. Unlike their lives at hospital, survivors had to be involved in daily activities such as studying, working, and going out with friends while dealing with the side-effects of treatment. The survivors may be disappointed with their lives after being discharged because they may have believed that they could return to the lives they lived before the illness.22 Some studies using generic measures have also reported worse outcomes for anxiety, depression, social competence, and self-esteem for childhood cancer survivors.23,24 Other descriptive studies noted a lower level of education status, employment status, and marital status.20,25 Previous studies in Japan have also suggested that childhood © 2014 Japan Pediatric Society
© 2014 Japan Pediatric Society
Physical difficulties 1 I am worried about not feeling well. 2 I have difficulty continuing treatment in daily life. 3 I feel weakening of my physical and muscle strength. 4 I feel sad about losing my hair because of treatment. 5 Cancer nullifies my appearance. 6 Cancer predisposes me to an infection or cold. Interpersonal difficulties 7 I feel left out from my friends’ lives or activities. 8 People treat me differently after they find out I have had cancer. 9 I wonder how to tell friends that I have had cancer, 10 People fail to recognize cancer. 11 I hate to watch and read tragic stories related to cancer. Behavioral difficulties 12 I have difficulty moving my body. 13 I have to be absent from school or work because of illness. 14 I am left behind academically. 15 I have difficulty participating in school events. 16 I have great difficulty climbing stairs and getting around. Uncertainty about the future 17 I am worried about having a recurrence. 18 I will be limited in future activities (e.g. academia, work, marriage). 19 Having had cancer makes me feel unsure about my future.
Items
Table 2 Psychosocial difficulties vs childhood cancer survivor characteristics
60 52 48 44 28 24 48 28 24 24 20 80 52 52 48 32 44 36 28
12 7 6 6 5 20 13 13 12 8 11 9 7
%
15 13 12 11 7 6
n
Total (n = 25)
3 6 2
7 4 3 4 5
3 4 2 0 0
4 2 3 3 2 1
n
38 75 25
88 50 38 50 63
38 50 25 0 0
50 25 38 38 25 13
%
Male (n = 8)
8 3 5
13 9 10 8 3
9 3 4 6 5
11 11 9 8 5 5
n
47 18 29
76 53 59 47 18
53 18 24 35 29
65 65 53 47 29 29
%
Female (n = 17)
Sex
1.00 0.01 1.00
1.00 1.00 0.41 1.00 0.06
0.67 0.16 1.00 0.13 0.14
0.67 0.10 0.67 1.00 1.00 0.62
P
6 4 4
10 5 6 5 3
7 3 3 3 3
8 8 5 5 1 2
n
43 29 29
71 36 43 36 21
50 21 21 21 21
57 57 36 36 7 14
%
Below average (n = 14)
5 5 3
10 8 7 7 5
5 4 3 3 2
7 5 7 6 6 4
n
45 45 27
91 73 64 64 45
45 36 27 27 18
64 45 64 55 55 36
%
Above average (n = 11)
Age at diagnosis
1.00 0.43 1.00
0.34 0.11 0.43 0.24 0.39
1.00 0.66 1.00 1.00 1.00
1.00 0.70 0.24 0.44 0.02 0.35
P
242 Y Takei et al.
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Items
n 4 3 5 2 2 1 3 2 2 2 0 7 5 6 5 4 3 3 2
% 57 43 57 29 29 14 43 29 29 29 0 100 71 86 71 57 43 43 29
n 5 4 3 5 4 3 4 2 1 0 2 7 4 4 4 3 3 3 2
% 56 44 33 56 44 33 44 22 11 0 22 78 44 44 44 33 33 33 22
5–9 (n = 9)
n 6 6 5 4 1 2 5 3 3 5 3 6 4 3 3 1 5 3 3
% 67 67 56 44 11 22 56 33 33 56 33 67 44 33 33 11 56 33 33
10–15 (n = 9)
Time since diagnosis (years)
0–4 (n = 7) 1.00 0.68 0.68 0.54 0.30 0.85 1.00 1.00 0.61 0.02 0.37 0.37 0.54 0.13 0.38 0.18 0.88 1.00 1.00
P n 11 11 9 8 4 4 11 3 3 5 4 15 10 11 8 5 8 5 5
% 61 61 50 44 22 22 61 17 17 28 22 83 56 61 44 28 44 28 28
Leukemia (n = 18) n 3 2 3 2 3 2 0 2 2 1 1 3 2 1 2 2 2 2 1
% 75 50 75 50 75 50 0 50 50 25 25 75 50 25 50 50 50 50 25
n 1 0 0 1 0 0 1 1 1 0 0 2 1 1 2 1 1 2 1
% 33 0 0 33 0 0 33 33 33 0 0 67 33 33 67 33 33 67 33
Bone tumor (n = 3)
Type of cancer Lymphoma (n = 4) 0.66 0.20 0.24 1.00 0.07 0.35 0.06 0.25 0.25 0.79 1.00 0.77 0.83 0.37 0.83 0.79 1.00 0.36 1.00
P n 4 2 4 4 3 3 2 3 3 2 1 6 6 5 3 0 2 2 2
% 67 33 67 67 50 50 33 50 50 33 17 100 100 31 50 0 33 33 33
Yes (n = 6) n 11 11 8 7 4 3 10 4 3 4 4 14 7 8 9 8 9 7 5
% 58 58 42 37 21 16 53 21 16 21 21 74 37 42 47 42 47 37 26
No (n = 19)
Radiation
0.55 0.28 0.28 0.21 0.19 0.13 0.36 0.19 0.13 0.45 0.66 0.22 0.01 0.09 0.64 0.07 0.45 0.64 0.56
P n 3 1 2 1 2 1 1 3 3 1 0 4 3 2 4 2 1 3 2
% 75 25 50 25 50 25 25 75 75 25 0 100 75 50 100 50 25 75 50
Yes (n = 4)
n 12 12 10 10 5 5 11 4 3 5 5 16 10 11 8 6 10 6 5
% 57 57 48 48 24 24 52 19 14 24 24 76 48 52 38 29 48 29 24
No (n = 21)
Surgery
0.47 0.27 0.67 0.40 0.31 0.69 0.33 0.06 0.03 0.69 0.38 0.38 0.33 0.67 0.04 0.38 0.40 0.12 0.31
P
Psychosocial difficulties in AYA 243
© 2014 Japan Pediatric Society
© 2014 Japan Pediatric Society
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Items
n 1 2 1 2 1 0 2 1 0 0 0 2 1 1 1 0 0 1 1
% 50 100 50 100 50 0 100 50 0 0 0 100 50 50 50 0 0 50 50
Yes (n = 2)
Table 2 Continued
n 14 11 11 9 6 6 10 6 6 6 5 18 12 12 11 8 11 8 6
No (n = 23)
Transplant
% 61 48 48 39 26 26 43 26 26 26 22 78 52 52 48 35 48 35 26 0.65 0.26 0.74 0.18 0.49 0.57 0.22 0.49 0.57 0.57 0.63 0.63 0.74 0.74 0.74 0.45 0.30 0.60 0.49
P n 2 2 3 2 2 1 2 3 1 0 0 4 2 2 2 1 0 2 1
% 50 50 75 50 50 25 50 75 25 0 −0 100 50 50 50 25 0 50 25
Yes (n = 4) n 12 11 9 9 5 5 10 4 5 6 5 16 11 11 10 7 11 7 6
No (n = 21)
Recurrence
% 57 52 43 43 24 24 48 19 24 29 24 76 52 52 48 33 52 33 29 0.53 0.67 0.27 0.60 0.31 0.69 0.67 0.05 0.69 0.31 0.38 0.38 0.67 0.67 0.67 0.62 0.08 0.46 0.69
P n 6 4 7 3 2 3 4 4 4 4 3 7 6 5 4 4 3 3 2
% 60 40 70 30 20 30 40 40 40 40 30 70 60 50 40 40 30 30 20
Capital area (n = 10)
n 9 9 5 8 5 3 8 3 2 2 2 13 7 8 8 4 8 6 5
% 60 60 33 53 33 20 53 30 13 13 13 87 47 53 53 27 53 40 33
Rural area (n = 15)
Treatment facility
0.66 0.28 0.08 0.23 0.40 0.46 0.40 0.26 0.15 0.15 0.30 0.30 0.40 0.60 0.40 0.39 0.23 0.47 0.40
P
244 Y Takei et al.
Psychosocial difficulties in AYA cancer survivors experience employment difficulties, low marriage rate, and psychological distress.26,27 The present results indicate that encountering difficulties in daily life as a result of a disease and its treatment may contribute to these unfavorable outcomes. For example, being absent from school because of illness might cause a decline in the ability to learn and thus hinder educational achievement. Changing body image or a decline in physical strength might also lead to low self-esteem. Therefore, it is important to watch for these signs and to provide early support to survivors so that their daily lives are not hindered by cancer treatment and or the side-effects. Second, many difficulties that survivors face might have a considerable effect on development. During the critical developmental transition from childhood to adulthood, young people have typical concerns with establishing identity, developing a positive body image, separating from parents, involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family.28,29 Accordingly, cancer-related difficulties such as changing body image, isolation and alienation from friends, disruptions in social life and school/ employment because of treatment, and health-related concerns about the future may be particularly distressing for adolescents and young adult survivors. It is important to create comprehensive, age-appropriate support that addresses overlapping and unique needs of survivors at this life stage. Third, some differences in the psychological difficulties faced by the survivors in their daily lives depended on survivor characteristics. Boys were likely to have trouble with respect to their present and future activities such as securing a job, and to worry about it; additionally, if they were diagnosed when they were older, they tended to worry more about changes in their body image. Furthermore, the difficulty that a survivor experiences also changes with the kind of medical treatment and experience of recurrence. Clinically, this suggests that it is important to offer support focusing on individual characteristics such as sex, age, and cancer history. Finally, survivors need long-term support. Survivors with a long history of cancer tended to harbor concerns about “People fail to recognize cancer.” This suggests that certain kinds of difficulties may occur at different times. Kazak et al. emphasized the value of age-appropriate resources and peer support.11 Because difficulties may change as survivors grow older, the support provided in the long term should change to meet these shifting needs. In considering these insights, it is important to also note several limitations of the present work. First, the small sample size may have limited the power of the frequency analysis and obscured possible effects detectable with a larger sample size. The analysis adopted minor opinions, however, and the attributes did not have any loopholes, and therefore, the study maintains its credibility. Second, there was also a sampling bias with regard to the specific patient diseases, namely a greater frequency of leukemia. Although patients with leukemia account for the greatest proportion of all childhood cancer patients,30 further research needs to investigate a diversity of cancers, especially given that psychosocial difficulty response patterns differ according to type
245
of cancer.31 Checking for cancer recurrence and late effects are also important. Third, the present participants were assessed at only one time point and provided retrospective reports on their experiences. Prospective investigations could lead to a greater understanding of the adjustment to daily life after being discharged. Fourth, this study explored the details of the psychosocial difficulties that survivors faced, but not the degree. The next step is a quantitative study to examine the association between survivor characteristics and psychosocial difficulties more closely. Conclusions
This exploratory study identified important factors of psychosocial difficulties faced by adolescent and young adult survivors of childhood cancer after being discharged from hospital. Nineteen attributes were extracted and classified into four categories as follows: physical difficulties, interpersonal difficulties, behavioral difficulties, and uncertainty about the future. The time spent receiving cancer treatment may make up a large percentage of a child’s life. These experiences might cause major changes in lifestyle. More attention should be paid to signs of difficulty in daily life, and more support should be provided to insure that their daily lives and development are not hindered by treatment and its side-effects. It is also important to offer long-term support focusing on individual characteristics such as sex, age, and cancer history. This study provides some useful information on recognizing concrete problems and delineating the best direction of support for adolescent and young adult survivors of childhood cancer.
Acknowledgments We express our sincere gratitude to the patients who agreed to share their experiences with us. This study was supported by a Grant-in-aid for Health and Labor Science Research (20220101).
References 1 Dickerman JD. The late effects of childhood cancer therapy. Pediatrics 2007; 119: 554–68. 2 Hawkins MM, Stevens MC. The long-term survivors. Br. Med. Bull. 1996; 52: 898–923. 3 Hudson MM, Mertens AC, Yasui Y et al. Health status of adult long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. JAMA 2003; 290: 1583–92. 4 Meeske KA, Ruccione K, Globe DR et al. Posttraumatic stress, quality of life, and psychological distress in young adult survivors of childhood cancer. Oncol. Nurs. Forum 2001; 28: 481–9. 5 Oeffinger KC, Mertens AC, Sklar CA et al. Chronic health conditions in adult survivors of childhood cancer. N. Engl. J. Med. 2006; 355: 1572–82. 6 Eiser C, Hill JJ, Vance YH. Examining the psychological consequences of surviving childhood cancer: Systematic review as a research method in pediatric psychology. J. Pediatr. Psychol. 2000; 25: 449–60. 7 Langeveld NE, Stam H, Grootenhuis MA et al. Quality of life in young adult survivors of childhood cancer. Support. Care Cancer 2002; 10: 579–600. 8 Stam H, Grootenhuis MA, Last BF. Social and emotional adjustment in young survivors of childhood cancer. Support. Care Cancer 2001; 9: 489–513.
© 2014 Japan Pediatric Society
246
Y Takei et al.
9 Woodgate R. Part I: An introduction to conducting qualitative research in children with cancer. J. Pediatr. Oncol. Nurs. 2000; 17: 192–206. 10 Sawyer LM, Antoniou G, Toogood I et al. A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer. Int. J. Cancer 1999; 12: 39–45. 11 Kazak AE, Rourke MT, Alderfer MA et al. Evidence-based assessment, intervention and psychosocial care in pediatric oncology: A blueprint for comprehensive services across treatment. J. Pediatr. Psychol. 2007; 32: 1099–110. 12 Moody K, Meyer M, Mancuso CA et al. Exploring concerns of children with cancer. Support. Care Cancer 2006; 14: 960–66. 13 Canadian Cancer Society. Canadian Cancer Statistics 2009. Special Topic: Cancer in Adolescence and Young Adults. Canadian Cancer Society, Toronto, 2009. 14 Evan EE, Zeltzer LK. Psychosocial dimensions of cancer in adolescents and young adults. Cancer 2006; 107: 1663–71. 15 Love C, Sabiston CM. Exploring the links between physical activity and posttraumatic growth in young adult cancer survivors. Psychooncology 2011; 20: 278–86. 16 Weber R. Basic Content Analysis. Sage Publications, London, 1990. 17 Hirai K, Miyashita M, Morita T et al. Good death in Japanese cancer care: A qualitative study. J. Pain Symptom Manage. 2006; 31: 140–47. 18 Yoshida S, Otani H, Hirai K et al. A qualitative study of decisionmaking by breast cancer patients about telling their children about their illness. Support. Care Cancer 2009; 18: 439–47. 19 Varni JW, Limbers C, Burwinkle TM. Literature review: Healthrelated quality of life measurement in pediatric oncology: Hearing the voices of the children. J. Pediatr. Psychol. 2007; 32: 1151–63. 20 Mulrooney DA, Dover DC, Li S et al. Twenty years of follow-up among survivors of childhood and young adult acute myeloid leukemia: A report from the childhood cancer survivor study. Cancer 2008; 112: 2071–9.
© 2014 Japan Pediatric Society
21 von Essen L, Enskar K, Kreuger A et al. Self-esteem, depression and anxiety among Swedish children and adolescents on and off cancer treatment. Acta Paediatr. 2000; 89: 229–36. 22 Schwartz CL, Hobbie WL, Constine LS et al., eds. Survivors of Childhood and Adolescent Cancer. A Multidisciplinary Approach, 2nd edn. Springer-Verlag, St Louis, MO, 2005. 23 Servitzoglou M, Papadatou D, Tsiantis I et al. Psychosocial functioning of young adolescent and adult survivors of childhood cancer. Support. Care Cancer 2008; 16: 29–36. 24 Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. J. Cancer Surviv. 2007; 1: 137–45. 25 Langeveld NE, Ubbink MC, Last BF et al. Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psychooncology 2003; 12: 213–25. 26 Asami K, Ishida Y, Sakamoto N. Job discrimination against childhood cancer survivors in Japan: A cross-sectional survey. Pediatr. Int. 2012; 42: 513–21. 27 Ishida Y, Honda M, Kamibeppu K et al. Social outcome and quality of life of childhood cancer survivors in Japan: A crosssectional study on marriage, education, employment and healthrelated QOL (SF-36). Int. J. Hematol. 2011; 93: 633–44. 28 Eiser C, Kuperberg A. Psychological support for adolescents and young adults. In: Bleyer WA, Barr RD (eds). Cancer in Adolescents and Young Adults. Springer Verlag, New York, 2007; 365–73. 29 Zebrack BJ, Chesler MA, Penn A. Psychosocial support. In: Bleyer WA, Barr RD (eds). Cancer in Adolescents and Young Adults. Springer Verlag, New York, 2007; 375–85. 30 Jemal A, Siegel R, Xu J et al. Cancer statistics, 2010. CA Cancer J. Clin. 2010; 60: 277–300. 31 Meeske KA, Patel SK, Palmer SN et al. Factors associated with health-related quality of life in pediatric cancer survivors. Pediatr. Blood Cancer 2007; 49: 298–305.
Copyright of Pediatrics International is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
