This article was adapted from a thesis by Yu Min Hwang in partial fulfillment of the requirements for the master’s degree at Seoul National University.
This study was supported by the research fund of Seoul Nurses Association in 2019.
This study aimed to determine the level of health-related quality of life (HRQoL) of children and adolescents who received hematopoietic stem cell transplantation (HSCT) and to examine factors influencing HRQoL.
This cross-sectional descriptive study involved 85 participants aged 10 to 19 years who received treatment from 3 months to 5 years after HSCT. Symptom experiences, stress and coping, self-esteem, social support, and HRQoL were measured. Descriptive analysis, the independent t-test, one-way analysis of variance, Pearson correlation analysis, and stepwise multiple regression were used for data analysis.
The mean HRQoL score was 72.26 points out of 100. HRQoL showed statistically significant correlations with symptom experiences, stress, self-esteem, social support, satisfaction with peer relationships, and perceived attentiveness of the medical team. The most influential predictors of HRQoL were symptom experiences (β=−.51,
The experiences of different symptoms by children and adolescents who receive HSCT must be considered. In addition, nursing interventions, such as self-help meetings with peer groups, should be provided to improve their HRQoL.
Hematopoietic stem cell transplantation (HSCT) restores bone marrow function after irradiation with high-dose anti-cancer drugs or radiation as a pretreatment to remove tumor cells and suppress immunity to prevent rejection of the transplanted cells. The outcomes of transplantation have been continuously improved through the diversification of pretreatment therapies, the use of new transplant sources, and drug development [
However, after HSCT, children with cancer experience side effects such as graft-versus-host disease, severe immune suppression, infertility, growth and developmental disorders, cataracts, recurrence, and secondary malignant tumors that occur during the long-term transplantation process. This often leads to physical, psychological, and social difficulties [
Because health-related quality of life (HRQoL) is a subjective state of well-being felt in relation to one’s internal and surrounding relationships, it varies according to individual expectations and values [
Domestic research on children with cancer and their families has tended to include various age groups (e.g., 10-20 years of age). Moreover, in most studies, the developmental stage of the children are either not clearly classified or the classification criteria are applied in different ways by different researchers. In the current study, the term “children and adolescents” refers to individuals aged 10-19 years, including the minimum and maximum ages as reported in a previous study [
HRQoL can affect the overall life experiences of children and adolescents, such as their internal and external characteristics and social relationships. Therefore, this study aimed to investigate the factors related to HRQoL that have been affected by disease and treatment in children and adolescents who have undergone HSCT, and to examine the relationships among these factors.
Thus, the objectives of this study were as follows: 1) to compare HRQoL according to general characteristics; 2) to identify correlations among symptom experiences, stress, coping, self-esteem, social support, and HRQoL; and 3) to identify factors affecting HRQoL.
This descriptive correlational study was conducted to identify HRQoL-related factors in children and adolescents after HSCT. The participants of this study were children and adolescents who were undergoing outpatient follow-up after HSCT at a university hospital in Seoul, South Korea. Specifically, the inclusion criteria were as follows: (1) children and adolescents aged 10-19 years who underwent allogeneic or autologous HSCT and were receiving follow-up management from 3 months to 5 years after HSCT, (2) children and adolescents and their parents who understood the purpose and methods of this study and consented to participate in the study, and (3) children and adolescents who understood and were able to respond to the questionnaire and could communicate appropriately.
The sample size was determined using G*Power version 3.1.9 based on an effect size of .20, a significance level of .05, and a power of .80, and the use of five predictive factors (symptom experiences, stress, coping, self-esteem, and social support) for multiple regression analysis. After calculation, the minimum required sample size was found to be 70, and an intended sample of 84 was planned, taking into account with a 20% withdrawal rate. The final number of participants who answered the questionnaire of this study was 85.
The following general characteristics of the subjects were analyzed: sex, age, diagnosis, type of HSCT, time since HSCT, family composition, and enrollment in school. In addition, children’s environment (i.e., family, friends, and medical personnel), were also considered as variables affecting HRQoL, and the questionnaire included questions about how much time they spent communicating with family members, their satisfaction with peer relationships, and the perceived attentiveness of the medical team.
Symptom experiences were measured using the tool developed by Larsen et al. [
Stress was measured using a standardized stress visual analog scale developed by Cline et al. [
Self-esteem was measured using the tool translated by Lee and Won [
The Multidimensional Scale of Perceived Social Support developed by Zimet et al. [
The Korean version of the Pediatric Quality of life Inventory (PedsQLTM) 4.0 self-reporting tool, developed by Varni et al. [
The study was approved by the Institutional Review Board of the university hospital in Seoul with which the principal investigator was affiliated (approval no. 1910-190-1078). To recruit study participants, the researcher reviewed children and adolescents with cancer who visited the pediatric oncology outpatient clinic and met the inclusion criteria. A consent form was obtained from each patient’s caregiver, who indicated that they understood the purpose and methods of the study and provided consent that the child could participate in the study. The children or adolescents then received an explanation of the study and signed an assent form indicating that they would participate in the study, after which the questionnaire survey was conducted.
In addition, the researcher conducted surveys in the outpatient waiting room during the outpatient waiting time. The completed questionnaires were immediately collected. Filling out the questionnaire took about 15-20 minutes. The data collection period of this study was from February to April 2020. A total of 87 copies of the questionnaire were distributed, and 85 copies were used as analytical data, excluding two copies with unanswered questions or unreasonable responses.
SPSS version 26 (IBM Corp., Armonk, NY, USA) was used to analyze the collected data. The subject’s general characteristics and measurement variables (symptom experiences, stress, coping, self-esteem, social support, and HRQoL) were analyzed using descriptive statistics. Multivariate normality of the sample was determined, and the mean, deviation, skewness, kurtosis, tolerance, and variance inflation factor (VIF) were determined. The independent-sample t-test and one-way analysis of variance were used to analyze differences in HRQoL according to participants’ general characteristics. Pearson correlation analysis was performed to analyze the correlations between symptom experiences, stress, coping, self-esteem, social support, and HRQoL. Using the variables that showed significant correlations as predictors, stepwise multiple regression analysis was performed to determine the relative influence of predictors on HRQoL.
There were 50 males (58.8%) and 35 females (41.2%) in this study. The average age of the subjects was 15.3 years. Twenty children and adolescents (23.5%) had acute lymphocytic leukemia, 14 children and adolescents (16.5%) had acute myeloid leukemia, and 14 children and adolescents (16.5%) had non-malignant diseases. The types of HSCT included autologous HSCT in 33 participants (38.8%) and allogeneic HSCT in 52 participants (61.2%). The time since HSCT for most participants (50.6%) was 1 year to less than 3 years. Most of them had family members (83.5%) including parents and siblings. Forty-six participants (54.1%) had returned to school (
In this study, the average level of symptom experiences was 58.95 points out of 96, the average level of stress was 4.01 points out of 10, and the score for stress coping strategy was 41.22 points out of 80. The average level of self-esteem was 34.96 points out of 50 and that of social support was 63.24 points out of 84. The average amount of time spent communicating with family was 2.31 hours out of 8. The average level of satisfaction with peer relationships was 7.36 points out of 10. When visiting the hospital, the average level of perceived attentiveness of the medical team was 8.54 points out of 10. The mean total HRQoL was 72.26 points out of 100, which was higher than the median value of the tool. The scores for HRQoL sub-items were as follows, in descending order: social functioning (average, 80.94 points), emotional functioning (average, 73.59 points), physical functioning (average, 69.41 points), and school functioning (average, 66.82 points) (
No significant differences in HRQoL were found according to gender, age, diagnosis, type of HSCT, time since HSCT, family structure, and school enrollment (
The results of analyzing the correlations among measurement variables in this study are as follows (
In addition, symptom experiences demonstrated a significant positive correlation with stress (r=.38,
Statistically significant negative correlations were found between stress and self-esteem (r=−.42,
Meanwhile, perceived attentiveness of the medical team had statistically significant positive correlations with self-esteem (r=.22,
In this study, symptom experiences, stress, self-esteem, social support, satisfaction with peer relationships, and perceived attentiveness of the medical team showed significant correlations with HRQoL in children and adolescents who received HSCT. Stepwise multiple regression analysis was used to identify meaningful predictors. First, the Durbin-Watson statistic was used to test the assumptions of the regression analysis, and it was confirmed that the residual assumptions of equal variance and normal distribution were satisfied. Next, multi-collinearity was tested using tolerance and the VIF. Because the tolerance limit was≤0.1 and the VIF values were not >10, all variables had no problem with multi-collinearity.
In the regression model, symptom experiences were a significant predictor in the first step, with an explanatory power of 34%(F=42.81,
This study determined the level of HRQoL in children and adolescents who received HSCT and analyzed the influence of related factors. This information will help nurses provide appropriate nursing interventions to assist children and adolescents in adapting to changes in their life after transplantation and overcoming related crises.
In this study, the mean score of HRQoL was 72.26 points out of 100, which is similar to the moderate level reported in another study using the same tool, PedsQLTM 4.0 [
In this study, the physical functioning sub-domain of HRQoL had a score of 69.41 out of 100, which was one of the lowest after school functioning (which had a score of 66.82 out of 100). In addition, symptom experiences and HRQoL showed the strongest negative correlation, and symptom experiences were found to be the most significant predictor of HRQoL. It is difficult to directly compare these results with previous studies because there has been no study on the symptoms of children and adolescents who have undergone HSCT. Nonetheless, the findings of this study are similar to those of a previous study reporting that the transplant group experienced more sequelae than the non-transplanted group [
Indeed, many children with childhood cancer experience physical problems that affect their social participation even after the completion of treatment, which is a barrier to their performance in roles such as completion of their education and employment. As such, symptom experiences have an important effect on HRQoL. Therefore, it is necessary to actively listen to patients’ symptom experiences and to interact with them regularly using therapeutic communication. In addition, it is important to assess nursing problems starting at the beginning of treatment and to develop appropriate nursing interventions.
In this study, social functioning was the sub-domain of HRQoL with the highest mean score (80.94 out of 100). In addition, satisfaction with peer relationships had a positive correlation with HRQoL and was the most significant predictor for HRQoL after symptom experiences. Considering that a previous study also found that peer relationships were a major variable affecting adolescents’ quality of life [
Regarding school functioning, even though children and adolescents undergoing HSCT do not attend school, they continue their academic progress by various methods such as attending school at a children’s hospital and video lectures. Therefore, participants may have had a high level of school functioning, a sub-area of HRQoL, regardless of whether they were enrolled in school. Although the HRQoL of children and adolescents attending school in the present study was higher than that of children and adolescents who did not attend school, this difference was not significant.
In contrast, positive self-esteem is an important personal resource for children to overcome their difficult situations by recognizing their strengths and weaknesses, realizing their own capabilities, and making independent decisions when challenges come. In light of this, even in children with cancer, self-esteem can be considered a major variable affecting adaptation despite the difficulties caused by cancer diagnosis or treatment [
This study found a statistically significant negative correlation between stress and HRQoL; similarly, a previous study on children and adolescent cancer survivors found a positive correlation between high stress symptoms and low HRQoL [
At the time of diagnosis, medical personnel are in a position to provide advice on improving existing social resources and health-related issues [
In this study, social support did not seem to be a significant predictor of HRQoL, although it exhibited a significant correlation with HRQoL. In previous studies of adolescents with chronic diseases, receiving more support from family, friends, and healthcare providers was associated with higher HRQoL [
The limitations of this study are as follows. Comparing our results with those of previous studies was difficult because most of the existing studies on HRQoL were conducted on children or adults with cancer, not those who underwent HSCT. In addition, because data were collected by convenience sampling of children and adolescents who underwent HSCT at a university hospital, it is necessary to be cautious in generalizing the results of this study to all children and adolescents receiving HSCT.
Despite these limitations, it is significant that HRQoL was measured among children and adolescents who underwent HSCT, who have been difficult to recruit and have been insufficiently studied. In addition, an important contribution of this study is that it was possible to confirm the directions of nursing interventions required for future children and adolescents undergoing HSCT.
This study was conducted to identify the factors influencing HRQoL after HSCT in children and adolescents. Statistically significant correlations were found between HRQoL and symptom experiences, stress, self-esteem, social support, satisfaction with peer relationships, and perceived attentiveness of the medical team. The most important factors for the HRQoL of children and adolescents who underwent HSCT were symptom experiences and satisfaction with peer relationships.
In light of these findings, the HRQoL of children and adolescents who undergo HSCT could be further improved by providing ongoing, regular nursing interventions that take into account the characteristics of their developmental stages from the initial stage to the end of treatment.
No existing or potential conflict of interest relevant to this article was reported.
Please contact the corresponding author for data availability.
General Characteristics of the Participants (
Variables | Categories | n (%) |
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Sex | Male | 50 (58.8) |
Female | 35 (41.2) | |
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Age (year) | 10-12 | 16 (18.8) |
13-15 | 29 (34.1) | |
16-19 | 40 (47.1) | |
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Diagnosis | ALL | 20 (23.5) |
AML | 14 (16.5) | |
Non-malignancy | 14 (16.5) | |
Lymphoma | 12 (14.1) | |
Osteosarcoma | 10 (11.7) | |
Ewing sarcoma | 6 (7.1) | |
Others | 9 (10.6) | |
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Type of HSCT | Autologous | 33 (38.8) |
Allogeneic | 52 (61.2) | |
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Time since HSCT | ≥ 3 months & < 1 year | 13 (15.3) |
≥ 1 year & < 3 years | 43 (50.6) | |
≥ 3 years & < 5 years | 29 (34.1) | |
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Family members | Parents and siblings | 71 (83.5) |
Grandparents, parents, and siblings | 4 (4.7) | |
Others | 10 (11.8) | |
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School enrollment | Yes | 46 (54.1) |
No | 39 (45.9) |
ALL, acute lymphoblastic leukemia; AML, acute myeloid leukemia; HSCT, hematopoietic stem cell transplantation.
Research Variables of Participants (
Variables | M±SD | Range |
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Symptom experiences | 58.95±16.03 | 24-96 |
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Stress | 4.01 (2.69) | 0-10 |
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Coping strategy | 41.22 (7.04) | 20-80 |
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Self-esteem | 34.96 (7.46) | 10-50 |
Social support | 63.24 (12.24) | 12-84 |
Time spent communicating with family | 2.31 (1.59) | 0-8 |
Satisfaction with peer relationships | 7.36 (2.36) | 1-10 |
Perceived attentiveness of the medical team | 8.54 (1.60) | 1-10 |
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Health-related quality of life | 72.26 (19.56) | 0-100 |
Physical functioning | 69.41 (26.86) | |
Emotional functioning | 73.59 (23.68) | |
Social functioning | 80.94 (20.46) | |
School functioning | 66.82 (24.05) |
Health-related Quality of Life by Participants’ Characteristics (
Variables | Categories | n (%) | M±SD | t or F | |
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Sex | Male | 50 (58.8) | 71.76±22.20 | 0.25 | .800 |
Female | 35 (41.2) | 70.60±18.29 | |||
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Age (year) | 10-12 | 16 (18.8) | 76.19±21.05 | 1.02 | .365 |
13-15 | 29 (34.1) | 72.93±18.36 | |||
16-19 | 40 (47.1) | 68.13±21.84 | |||
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Diagnosis | ALL | 20 (23.5) | 66.45±21.01 | 0.40 | .878 |
AML | 14 (16.5) | 73.36±25.63 | |||
Non-malignancy | 14 (16.5) | 73.36±22.52 | |||
Lymphoma | 12 (14.1) | 76.92±17.68 | |||
Osteosarcoma | 10 (11.7) | 68.50±10.77 | |||
Ewing sarcoma | 6 (7.1) | 70.17±22.60 | |||
Others | 9 (10.6) | 71.89±22.18 | |||
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Type of HSCT | Autologous | 33 (38.8) | 73.67±17.41 | 0.85 | .398 |
Allogeneic | 52 (61.2) | 69.77±22.38 | |||
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Time since HSCT | ≥ 3 months & < 1 year | 13 (15.3) | 71.92±15.11 | 1.59 | .211 |
≥ 1 year & < 3 years | 43 (50.6) | 67.65±23.73 | |||
≥ 3 years & < 5 years | 29 (34.1) | 76.38±16.73 | |||
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Family members | Parents and siblings | 71 (83.5) | 71.58±19.88 | 1.21 | .305 |
Grandparents, parents, and siblings | 4 (4.7) | 83.00±9.42 | |||
Others | 10 (11.8) | 64.50±27.09 | |||
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School enrollment | Yes | 46 (54.1) | 74.83±16.76 | 1.70 | .094 |
No | 39 (45.9) | 67.10±23.87 |
ALL, acute lymphoblastic leukemia; AML, acute myeloid leukemia; HSCT, hematopoietic stem cell transplantation.
Correlations among the Major Variables (
Variables | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 |
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r ( |
r ( |
r ( |
r ( |
r ( |
r ( |
r ( |
r ( |
r ( | |
1. Symptom experiences | 1 | ||||||||
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2. Stress | .38 (<.001) | 1 | |||||||
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3. Coping strategy | .17 (.125) | .16 (.151) | 1 | ||||||
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4. Self-esteem | −.39 (<.001) | −.42 (<.001) | −.01 (.965) | 1 | |||||
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5. Social support | −.16 (.143) | −.20 (.065) | .10 (.372) | .24 (.028) | 1 | ||||
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6. Time spent communicating with family | −.12 (.274) | −.20 (.072) | .04 (.728) | .22 (.048) | −.02 (.885) | 1 | |||
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7. Satisfaction with peer relationships | −.25 (.021) | −.31 (.004) | .05 (.623) | .53 (<.001) | .39 (<.001) | .08 (.487) | 1 | ||
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8. Perceived attentiveness of the medical team | −.09 (.427) | −.24 (.029) | .12 (.268) | .22 (.049) | .34 (.002) | −.03 (.760) | .46 (<.001) | 1 | |
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9. HRQoL | −.58 (<.001) | −.39 (<.001) | −.09 (.425) | .45 (<.001) | .24 (.027) | .10 (.376) | .44 (<.001) | .27 (.014) | 1 |
HRQoL, health-related quality of life.
Factors Influencing Health-related Quality of Life (
Variables | Categories | B | SE | β | t | |
---|---|---|---|---|---|---|
Step 1 | Constant | 114.39 | 6.66 | 17.18 | .001 | |
Symptom experiences | −0.71 | 0.11 | −.59 | 6.54 | .001 | |
R2=.34, Adj. R2=.34, F=42.81, |
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Step 2 | Constant | 89.92 | 9.05 | 9.94 | .001 | |
Symptom experiences | −0.62 | 0.11 | −.51 | 5.89 | .001 | |
Satisfaction with peer relationships | 2.55 | 0.69 | .32 | 3.71 | .001 | |
R2=.44, Adj. R2=.43, F=31.62, |
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