
In 2020, the crude incidence rate of childhood and adolescent cancer in South Korea (per 100,000 population) was 16.6 cases, which accounted for only 0.56% of all the 247,952 cancer cases; nevertheless, in this age group, among diseases, childhood and adolescent cancer is the most common cause of death. Over the last 30 years, the survival rate of childhood and adolescent cancer in South Korea has improved markedly from 56.2% (1993-1995) to 86.3% (2016-2020) [1]. Assuming that about 1,000 cases of cancer occur each year among children and adolescents under the age of 15, the cumulative number of childhood and adolescent cancer survivors over the past 30 years is estimated to be 25,000 people. The management of childhood and adolescent cancer requires a multidisciplinary approach. It involves treatments such as surgery, chemotherapy, and radiotherapy and lasts for 2-3 years. After the completion of their treatment, patients are required to continuously manage their health with regard to disease recurrence and late complications; it is expected that this period will be extended to 70 years or more, and it is an area that requires national management.
During the treatment period, childhood and adolescent cancer patients who are in the midst of physical development are affected in the following ways: not only is their physical development hindered, but they are also affected psychologically and socially, with the lives of their family members being affected [2,3]. Psychosocial care for cancer survivors and their families can mitigate the effects of psychological and social development and is a crucial part of determining potential mental health states to support children in school [4].
In a health-related needs survey of childhood and adolescent cancer survivors in South Korea, the following items were assessed: the need for positive self-change, the need for information and medical systems, and the need for financial support. The relationship between participants’ health-related needs and quality of life had a significant negative correlation [5]. In particular, because returning to school and adjusting to school life after treatment is very important, there is a strong need for school adjustment; however, the physical, psychological, and cognitive sequelae that occur after treatment may make returning to school difficult [6,7]. Survivors of childhood and adolescent cancer experience fear and stress as their return to school draws near; they feel anxious about how their classmates and teachers will view them and their medical history, as well as about whether they will be able to adjust to group activities. The following issues have been reported among childhood and adolescent cancer survivors: difficulty in returning to education and career plans, poor school adjustment, low satisfaction with friendships, and bullying by peers [8-10]. As social interactions and academic tasks that are suited to one’s developmental stage are important to childhood and adolescent cancer survivors, supporting their successful return to school is extremely important. Therefore, this study conducted a survey of childhood and adolescent cancer survivors, their parents, and the parents of healthy children and adolescents to investigate the health status of childhood and adolescent cancer survivors and determine the current situation regarding their return to school, which would then be used as a basis for policy development. And also, needs and awareness for the issue of childhood and adolescent cancer survivors were surveyed among parents raising children in childhood and adolescence. They affect childhood and adolescence cancer survivors when they return to school. Afterwards, this study would be conducted to teachers and peers, which can be used as basic data for various problems that childhood and adolescent cancer survivors will face when they return to school.
The study participants were divided into three groups: 1) adult survivors of childhood and adolescent cancer aged 18 years or older (hereafter referred to as cancer survivors), 2) parents of childhood and adolescent cancer survivors (hereafter referred to as parents of cancer survivors), and 3) parents of children and adolescents between the ages of 6 and 18 who had never been diagnosed with cancer at the time of the survey (hereafter referred to as general parents).
In this study, a survivor of childhood and adolescent cancer was defined as a “patient who has completed active treatment (e.g., chemotherapy, surgery, and radiotherapy) in order to be cured after being diagnosed with cancer between the ages of 6 and 18.”
A structured self-administered questionnaire was used in the present study. Although the questionnaire items were slightly different by group, they included the following: demographic characteristics, information regarding cancer diagnosis and treatment, physical and mental health status, current situation regarding return to school (school life), support to maintain school life, perceptions regarding childhood and adolescent cancer survivors, and the health status of parents.
From December 6, 2019 to March 27, 2020, a structured questionnaire was used to conduct one-on-one interviews with cancer survivors and parents of cancer survivors after obtaining the approval of each participating hospital’s institutional review board; this included the pediatric and adolescent medicine department of the National Cancer Center, Gyeongsang National University Hospital, and Jeju National University Hospital, which are carrying out an integrated childhood and adolescent cancer survivorship support program. Participants were selected by random sampling.
In the case of parents of healthy children and adolescents, a sample was selected through purposive quota sampling from among residents of Seoul and major metropolitan cities (i.e., Seoul, Busan, Daegu, Gwangju, and Daejeon), and one-on-one interviews were conducted using a structured questionnaire during the same period as above.
This study presented the participants’ general characteristics, health status, and frequency and percentage of key variables; it also conducted a cross-analysis of the relationship between school life satisfaction, treatment period, and children’s health status. Non-responses and “don’t know” responses were treated as missing values and analyzed. The SAS 9.4 program was used to analyze the collected data.
This study was approved by the Institutional Review Board (IRB) of the National Cancer Center (NCC2020- 0048), Gyeongsang National University Hospital (2019- 12-011-002) and Jeju National University Hospital (2020- 04-022). The need for informed consent was waived by the IRB.
A total of 881 people participated in the survey: 79 cancer survivors, 186 parents of cancer survivors, and 616 parents of healthy children and adolescents (general parents). The general characteristics of the participants are shown in Table 1 (*The general parents’ responses were based on their first child). For the cancer survivors, their diagnoses in decreasing order were leukemia (22.8%), brain tumor (20.3%), malignant lymphoma (13.9%), and osteosarcoma (13.9%), and their treatment included chemotherapy (87.3%), surgery (62%), radiotherapy (49.4%), and hematopoietic stem cell transplantation (19%) (Table 2).
Table 1 . Subject characteristics.
Division | Cancer survivors n=79 (%) | Parents of cancer survivors n=186 (%) | General parents* n=616 (%) | |
---|---|---|---|---|
Child and adolescent gender | Male | 48 (60.8) | 100 (53.8) | 312 (50.6) |
Female | 31 (39.2) | 82 (44.1) | 304 (49.4) | |
No responses | - | 4 (2.1) | - | |
Respondent gender | Male | 48 (60.8) | 50 (26.9) | 94 (15.3) |
Female | 31 (39.2) | 132 (71.0) | 522 (84.7) | |
No responses | 4 (2.1) | |||
Child and adolescent age | 0-9 yr | - | 29 (15.6) | 175 (28.4) |
10-14 | - | 52 (28.0) | 213 (34.6) | |
15-19 | 8 (10.1) | 45 (24.2) | 228 (37.0) | |
20-24 | 41 (51.9) | 41 (22.0) | - | |
≥25 | 29 (36.7) | 15 (8.1) | - | |
Other/no responses | 1 (1.3) | 4 (2.1) | - | |
Average | 21.8 | 13.9 | 12.5 | |
Respondent age | ≤30 | 75 (95.0) | 16 (8.6) | 158 (25.6) |
30-50 | 4 (5.0) | 89 (47.9) | 377 (61.2) | |
≥50 | - | 77 (41.4) | 78 (12.7) | |
Don't know/no responses | - | 4 (2.1) | 3 (0.5) |
*The general parents’ responses were based on their first child..
Table 2 . Diagnosis and treatment methods for cancer survivors and parents of cancer survivors.
Cancer survivors n=79 (%) | Parents of cancer survivors n=186 (%) | ||
---|---|---|---|
Diagnosis | Leukemia | 18 (22.8) | 56 (30.1) |
Brain tumor | 16 (20.3) | 52 (27.9) | |
Malignant lymphoma | 11 (13.9) | 19 (10.2) | |
Osteosarcoma | 11 (13.9) | 12 (6.4) | |
Ewing sarcoma | 5 (6.3) | 2 (1.1) | |
Ovarian cancer | 3 (3.8) | ||
Nasopharyngeal cancer | 2 (2.5) | ||
Myelodysplastic syndrome | 2 (2.5) | ||
Germ cell tumor | 2 (2.5) | ||
Neuroblastoma | 1 (1.3) | 2 (1.1) | |
Retinoblastoma | 2 (1.1) | ||
Wilms tumor | 1 (1.3) | 2 (1.1) | |
Rhabdomyosarcoma | 1 (1.3) | 8 (4.3) | |
Histiocytosis | 5 (2.7) | ||
Etc. | 6 (7.6) | 26 (14) | |
Therapy (duplicate selection) | Chemotherapy | 69 (87.3) | 165 (88.7) |
Surgery | 49 (62.0) | 89 (47.8) | |
Radiation therapy | 39 (49.4) | 87 (46.8) | |
Hematopoietic stem cell transplant | 15 (19.0) | 40 (21.5) |
With respect to the overall health status, about 55.7% of childhood and adolescent cancer survivors responded that they were “on the healthy side,” while 68.8% of the parents of childhood and adolescent cancer survivors and 97.4% of the general parents responded that their child was “on the healthy side,” thus indicating a difference between the groups regarding overall health status. The response “on the healthy side” was a combination of two responses, “very healthy” and “on the healthy side.” On the other hand, 10.1% of cancer survivors, 8.6% of parents of cancer survivors, and 0.3% of general parents responded that they were “not healthy” (Fig. 1).
By evaluating their overall health status themselves, this study found that the mean score for childhood and adolescent cancer survivors was 65.2 points (66.7 points for males and 62.9 points for females) out of 100 points. Cancer survivors responded as follows regarding the physical difficulties they experienced: irregular declines in physical condition (20.3%), difficulty in the workplace due to decreased physical stamina (20.3%), difficulty in using physical strength (16.5%), decline in mental ability, such as concentration and memory (12.7%), difficulty in managing stress (11.4%), and none (10.1%). Cancer survivors stated that their self-confidence decreases when they feel that their academic ability has declined (30.4%) and when they feel that their appearance has changed (30.4%). This study determined the following mean scores out of 100 points for levels of self-evaluating the degree of stress, fatigue, insomnia symptoms, anxiety, and depression in childhood and adolescent cancer survivors over the past week: fatigue (46.3 points), stress (42.3 points), insomnia symptoms (31.9 points), depression (26.8 points), and anxiety (23.4 points).
After completing their cancer treatment, 77.2% of cancer survivor respondents (n=79) returned to school, and much higher at 90% of them return to regular school.
When they returned to school, 47.5% of the respondents returned to high school, constituting the largest group and 18% to elementary and college, respectively (Fig. 2). The study determined that the decision to return to school was primarily that of the cancer survivors themselves. With respect to the period of returning to school, 62.3% returned after the completion of all cancer treatments and 29.5% returned after completing the first inpatient treatment that followed the diagnosis.
When returning to school, 75.4% of the survivors returned to the same grade as their peers. Reasons for not returning to the same grade as their peers (23%) included not being promoted to the next grade because of poor school attendance (50%), restrictions in physical activity (35.7%), and leave of absence (28.6%)
(2) Current situation of not returning to schoolAfter the completion of treatment, 20.3% (n=16) of the cancer survivors did not return to school because of concerns about health management (43.8%), concerns about psychological and emotional adjustment (12.5%), not being promoted to the next grade because of poor school attendance (12.5%), cancer diagnosis after graduation (6.3%), and being homeschooled (6.3%). In case of children of parents of cancer survivors, 24.7% (n=46) did not return to school because of concerns about health management (43.5%), concerns about psychological and emotional adjustment (15.2%), preschool age (15.2%), having difficult relationship with peers (8.7%) (Fig. 3).
When returning to school, cancer survivors were most concerned about their relationships with peers (27.9%) and health management (e.g., fatigue, subjects requiring participation, such as physical education, and meals) (26.2%). As for parents of cancer survivors, they were most concerned about their children’s health management (e.g., fatigue, subjects requiring participation such as physical education, and meals) (27.4%) and their children’s relationships with peers (24.7%) (Table 3). Regarding those who helped, cancer survivors responded that their peers (34.4%), the cancer survivors themselves (31.1%), and their parents (19.7%) helped them adjust to school life, while the parents of cancer survivors responded that the parents themselves (25.3%), homeroom teachers (21.0%), and classmates (15.6%) helped.
Table 3 . Concerns about returning to school.
Cancer survivor (%) | Parents of cancer survivors (%) | |
---|---|---|
Relationship with peers due to long-term hospitalization for disease treatment | 27.9 | 24.7 |
Concern about health care | 26.2 | 27.4 |
Concern about poor learning | 16.4 | 12.4 |
Adaptation to general school life | 13.1 | 14 |
Concern about psychoemotional adjustment | 9.8 | 6.5 |
Other (none, etc.) | 6.6 | 15.0 |
Approximately half of the parents of cancer survivors (48.9%) were “satisfied” with their children’s school life and had a mean satisfaction score of 63.1 points (out of 100 points). In addition, health status of cancer survivors had a significant effect on school life satisfaction (
Table 4 . Satisfaction with school life, treatment period, and child's health status.
Dissatisfied n=65 (%) | Satisfied n=89 (%) | Chi square | |||
---|---|---|---|---|---|
Treatment period | <3.09 yr | 45 (44.6) | 56 (55.5) | 0.6625 | 0.4157 |
≥3.09 yr | 20 (37.7) | 33 (62.3) | |||
Child’s health | Bad | 8 (72.7) | 3 (27.3) | 9.8911 | 0.0071 |
Common | 20 (57.1) | 15 (42.9) | |||
Good | 39 (34.8) | 73 (65.2) |
*Average treatment period was 3.09 years, divided into two groups based on the average..
**Satisfaction with school life..
Satisfaction: If you answered Satisfied or Very Satisfied; Dissatisfaction: not satisfied, little..
To promote a successful return to school, cancer survivors responded that national-level support was needed to provide a continuous health management system (36.1%), alongside the understanding of homeroom teachers to enable flexible student participation in classes and school events (29.5%). The parents of cancer survivors responded that awareness education about childhood and adolescent cancer survivors is needed for the teachers and students of regular schools before their children’s return to school (24.7%), in addition to requiring understanding homeroom teachers who enable flexible student participation in classes and school events (18.8%) (Table 5).
Table 5 . Items requiring support at the national level in relation to returning to school.
Cancer survivors n=61 1st place (%) | Parents of cancer survivors n=186 1st place (%) | |
---|---|---|
Awareness education about childhood and adolescent cancer survivors for teachers and students of regular schools before returning to school | 11.5 | 24.7 |
Understanding of homeroom teachers for flexible participation in classes and school events | 29.5 | 18.8 |
Social and interpersonal skills for students with health disabilities before returning to school | 6.6 | 14.0 |
Continuous health management system | 36.1 | 13.4 |
Individualized learning support | 11.5 | 12.9 |
Continued contact with medical staff and school teachers during treatment | 1.6 | 4.9 |
Other/no response | 3.2 | 11.3 |
Of the general parents, 57.8% were in favor of their children studying with survivors of childhood and adolescent cancer, while 37.5% responded that they were neither for nor against their studying together. An overall 4.7% responded that they were against it. Reasons for being against it included the following: childhood and adolescent cancer survivors will have difficulty adjusting (55.2%), learning will decline in classes (37.9%), and the teacher’s attention will be dispersed (6.9%).
When general parents were asked whether support was needed for the issue of childhood and adolescent cancer survivors, they responded as follows: the issue requires more national attention and institutional supplementation (31.2%), greater attention should be paid to the issue as anyone can become a survivor of childhood and adolescent cancer (31.0%), the issue should be addressed within the local communities that surround childhood and adolescent cancer survivors (17.5%), and the issue should be overcome by childhood and adolescent cancer survivors and their families (17.2%).
The following items regarding support for childhood and adolescent cancer survivor were listed responded by general parents in order of importance. The importance of items was inferred in order of mean score out of 100 points: continuously managing the sequelae and complications of cancer treatment (88.7 point), preventing cancer recurrence (87.5 point), managing mental health problems that may arise due to experiences with cancer (84 point), improving the primary physical health of cancer survivors (82.8 point), health insurance coverage regarding healthcare services (82.6 point), cancer survivors’ smooth return to society (82.3 point), and linked services of hospitals and local community-related institutions (81.4 point). Furthermore, support-related items included alleviating the overall discrimination in society against cancer survivors (78.3 point), policies related to disability registration and welfare benefits (77.2 point), policies regarding the financial support of cancer survivors (77.1 point), and policies supporting families of cancer survivors (73.4 point).
After a model and long-term follow-up management committee were proposed in 2007 to establish a cohort of childhood and adolescent cancer survivors, efforts have been made to establish this cohort in South Korea by the Korean Society of Pediatric Hematology-Oncology, in addition to establishing standardized childhood and adolescent cancer survivorship guidelines and a long-term follow-up management system [11]. The Childhood Cancer Survivor Study of the United States formed a cohort (between 1970 and 1999) of 20,000 childhood and adolescent cancer survivors who were younger than 21 years of age when diagnosed. Currently, it has established a cohort of 50,000 survivors, has about 10,000 of their siblings as a control group, and gathers basic information and treatment-related information for a long-term follow-up. Based on this information, research is being conducted on late adverse health outcomes regarding survivors of childhood and adolescent cancer. In addition, long-term follow-up guidelines were established in 2003 by the Long-Term Follow-Up Guidelines Core Committee of the Children’s Oncology Group and were published on their website; moreover, Passport for Care, a web-based program that creates individual survivorship care plans, was developed and is being utilized for long-term follow-up [12]. The standardized psychosocial service guidelines regarding childhood and adolescent cancer that were published in the U.S. in 2015 include a broad range of areas such as psychosocial assessment; financial assessment and support; end-of-life care and bereavement interventions; family-centered services; provision of education and information; palliative care; and communication between the school, patient, and healthcare providers [13].
Beginning with the 3rd National Cancer Control Plan (2016-2020) [14], South Korea began to stipulate the provision of medical care, healthcare, and welfare through integrated regional support centers for cancer survivors, including the provision of cancer survivor support services. In particular, provisions were included for the health management of childhood and adolescent cancer survivors as well as for their safe return to school. Based on these institutional regulations, integrated childhood and adolescent cancer survivorship support programs were launched in Gyeonggi, Gyeongnam, and Jeju in 2019. After being launched, they were operated in cooperation with local communities such as public health centers, regional offices of education, and schools, to prepare standardized programs regarding psychological support, hands-on self-management, returning to school, and a multidisciplinary clinic for survivors. Subsequently, the 4th National Cancer Control Plan (2021-2025) [15] focused on the childhood and adolescent cancer survivors’ return to school and academic adjustment in order to prepare a service delivery system that was linked to schools and regional offices of education; furthermore, it planned to prepare an integrated support service model for parents and siblings in addition to developing health promotion programs for cancer survivors. To implement these plans, the participation of psychosocial experts, including healthcare providers, is necessary. Therefore, the following should be provided with the intervention of psychosocial experts: regular monitoring of cancer survivors’ educational and occupational situation; monitoring of distress, anxiety, and depression; monitoring of risky health behaviors such as drinking and smoking; and the provision of appropriate interventions. Additionally, together with the regional offices of education, efforts should be made to develop periodic educational programs to help teachers and students improve their understanding of childhood and adolescent cancer patients.
In this study, childhood and adolescent cancer survivors responded that they needed a personal counseling service provided by experts (44.3%), a health management program (36.7%), and a psychotherapy service (27.8%); yet, only about 34% of the respondents had used such services in the past (supplementary Figure). Of the childhood and adolescent cancer survivors, 77.2% returned to school after their cancer diagnosis; 62.3% returned after the completion of all cancer treatments. Their concerns regarding returning to school included forming relationships with their peers (27.6%) and apprehensions about managing their health (26.2%). In terms of help received in their school life, they stated that their peers (34.4%), the cancer survivors themselves (31.1%), and their parents (19.7%) were the most helpful; this order demonstrates the importance of forming relationships with one’s peers. Moreover, to return to school successfully, childhood and adolescent cancer survivors should take part in a program that prepares them for their return by improving their ability to adjust to school. According to Lee et al., [16] when survivors of childhood and adolescent cancer returned to school, they experienced difficulties regarding their physical status, peer relationships, academic performance, and emotional and behavioral issues. In addition, 83.1% of teachers and 44.9% of peers responded that they adequately understood the condition of cancer survivors; most of the parents of cancer survivors stated that their children needed a program to help prepare them for their return to school in terms of emotional support, social adjustment, being tutored to catch up with their studies, and their continuous health management.
In this study, 48.9% of the parents of cancer survivors and 75.5% of general parents (
This study’s survey results show that it is important to show support and consideration to childhood and adolescent cancer survivors, and efforts should also be made to improve the negative perceptions that are still prevalent in our society with respect to cancer survivors. Moreover, for cancer survivors to return to school successfully, services must be provided to help not only their physical health but also their psychological and emotional adjustment. There is a need to educate homeroom teachers and peers to help them better understand childhood and adolescent cancer survivors. Therefore, it is even more necessary that regional offices of education cooperate with the integrated childhood and adolescent cancer survivorship support program, as specified in the National Cancer Control Plan.
A limitation of this study is that it did not separately analyze health status according to the disease and treatment intensity of childhood and adolescent cancer sur-vivors. Furthermore, it did not separately analyze the obstacles of returning to school, nor the needs of those returning to school. In future research, it may be necessary to conduct a detailed analysis according to each type of disease or the intensity of chemotherapy and radiothe-rapy treatments, which could help identify those who need active interventions.
Supplementary materials can be found via https://doi.org/10.15264/cpho.2023.30.2.60.
cpho-30-2-60-supple.pdfThe authors have no conflict of interest to declare.