The Effects of Illness Cognition on Resilience and Quality of Life in Korean Adolescents and Young Adults with Leukemia

Abstract

Purpose:

The purpose of this study was to examine the effects of illness cognition on resilience and quality of life (QOL) in adolescents with leukemia.

Methods:

This study used a cross-sectional, descriptive design. The study was conducted at a hospital in Seoul, Korea. The target population of this study was 72 adolescents and young adults (AYA) who received follow-up visit for leukemia. Participants completed measures of their resilience, illness cognition (i.e., helplessness, acceptance, and perceived benefits), and QOL. The correlation between the study variables was analyzed using Pearson's correlation coefficient, while the impacts on resilience and QOL were analyzed using hierarchical multiple regression.

Results:

Acceptance, which is a subcategory of illness cognition, was associated with resilience and QOL of AYA leukemia survivors. After acceptance was included in model 2 using the hierarchical multiple regression analysis, the increased explanatory powers of resilience and QOL were 23% and 33%, respectively.

Conclusion:

The results suggest that acceptance, which is a subcategory of illness cognition, may be an important factor for resilience and QOL in AYA leukemia survivors.

Introduction

Childhood cancer occurs in about 16 per 100,000 children every year in Korea.¹ Leukemia accounts for 32.9% of childhood cancers, and the incidence of leukemia in patients younger than the age of 14 years is 4.4% per 100,000, which makes it a major cause of childhood cancer.¹ Due to the multidimensional therapeutic process that may include chemotherapy, stem cell transplantation, and radiotherapy, which are commonly accompanied by both physical and psychological side effects, patients with childhood cancer are generally exposed to uniquely stressful situations during childhood, degrading their quality of life (QOL) during the initial treatment period and even after they become an adult.^2,3 Treatment-related health improvements are associated with a clear biologic understanding of leukemia and the selection of appropriate therapeutic techniques as a result of knowledge of the various prognostic factors identified in multicenter clinical studies.⁴ Over the past 20 years, the 5-year survival rate has increased from 46.9% to 82.0%, which is a greater improvement than that seen in any other pediatric cancer.¹ With this remarkable increase in survival rate, attention has become focused on children and adolescents with leukemia, specifically regarding recovery of health after successful treatment and subsequent return to normal life.^2,3

The adolescent period is the time to establish one's self-concept. By establishing a self-concept, adolescents can recognize the differences between themselves and others, identify their strengths, and improve their coping power to overcome adversity. However, adolescents with chronic illness continue to manage their disease and are at risk of recurrence, so they may have difficulties in forming self-identity, thus affecting their QOL.^5,6 Nowadays, many young adult childhood cancer survivors such as leukemia survivors are refusing to tolerate social prejudices, despite their physical, psychological, and social constraints, and continue to rely upon their strengths to live their lives to the best of their ability.⁷ However, in reality, adolescents with leukemia have been reported to have lower QOL in physical and school functioning versus the general population.^8,9

Resilience refers to the ability to adapt to situations and environments through self-regulation, and the topic has received attention with respect to its connection with QOL of patients with chronic illness.^10,11 Several studies have revealed that patients with higher level of resilience tend to demonstrate treatment adhesion and self-care behaviors and improved QOL.¹⁰ The concept of resilience can be applicable in both children and adolescents with childhood cancers who are vulnerable to stress and threat situations, and studies have revealed the relationship of this topic with QOL and coping style.^12–14

Illness cognition is a dynamic concept that influences the coping style of patients with chronic illness as well as patient well-being.^15,16 Several studies have been conducted according to the recognition that illness cognition in patients with chronic disease has a great influence on coping power and QOL.^15,17–19 Especially, it is thought that adolescent coping power and QOL depend on their perception of their disease because they generally form self-identity based on their status with the disease.¹⁵ Since there is an ongoing increase in the number of children and adolescents surviving childhood-onset cancer, it is essential to know how these individuals recognize their disease to improve their QOL, even after becoming adults. However, much less attention has been paid to adolescents and young adults (AYA) with chronic disease such as childhood cancer in Korea, and existing studies have shown little evidence regarding imperative and influential concepts in AYA with leukemia. The present study is necessary to address critical knowledge gaps related to illness cognition, resilience, and QOL in AYA with leukemia.

The purpose of this study was to investigate the effects of illness cognition on resilience and QOL of AYA with leukemia.

Methods

Study design

This study was a descriptive, cross-sectional study that aimed to explore the relationship of illness cognition on resilience and QOL in Korea AYA with leukemia.

Participants and data collection

The study was conducted at a hospital in Seoul, Korea. The target population of this study was AYA aged 13 to 20 years who received follow-up visit for leukemia after completing treatment, including induction therapy, consolidation therapy, maintenance therapy, and/or hematopoietic stem cell transplantation. Individuals were included if they expressed a willingness to participate and could complete all the necessary questionnaires. Participants worked on the questionnaires in a calm, quiet room, and each survey was designed to take ∼15 minutes to complete, including the consent form. The research was collected when the AYA visited the outpatient clinic, with the cooperation of the doctor and the related department. The researchers explained the purpose of the study to the AYA and caregivers who were waiting in the outpatient clinics, and the questionnaires were distributed when the caregivers agreed to participate in the research. The sample size was calculated with G*Power software (version 3.1.2).²⁰ The minimum sample size calculated was 55 with an 80% power, an alpha = 0.05, and an effect size of 0.15 for multiple regression analysis with four predictors.

Measurement

AYA with leukemia completed a self-report questionnaire to evaluate illness cognition, resilience, QOL, and general characteristics.

Individual characteristics and clinical indices

The characteristics of AYA were collected with background information of age, gender, school level, number of siblings, religion, parents' marital status, parents' education levels, perceived economic status, disease type (i.e., acute myeloid leukemia or acute lymphatic leukemia), and hematopoietic stem cell transplantation. Medical records were assessed for information about the primary diagnosis.

Illness cognition

The Illness Cognition Questionnaire (ICQ), which was developed by Evers and Kraaimaat,²¹ was used to measure illness cognition among AYA. The ICQ consists of 3 subscales of 18 items total (6 for helplessness, 6 for acceptance, and 6 for perceived benefits) and the items are answered using four-point scales. The summed scores on the ICQs collected during the present study ranged from 4 to 72. The scale was translated into Korean by a researcher, a bilingual person back-translated the results into English, and three experts in pediatric nursing evaluated the validity. Cronbach's alpha values in a previous study on young adults with chronic illness were 0.84 for helplessness, 0.88 for acceptance, and 0.84 for perceived benefits,¹⁹ while the same values for the ICQ in the present study were 0.78 for helplessness, 0.83 for acceptance, and 0.85 for perceived benefits.

Resilience

Resilience was evaluated using the Resilience Scale developed by Wagnild and Yong.²² The Resilience Scale consists of 25 items scored using a seven-point Likert scale ranging from 1 (disagree) to 7 (agree). The Resilience Scale consisted of 2 subscales, including 25 items, specifically “acceptance of self and life (eight items)” and “personal competence (17 items).” The possible scores range from 25 to 175, with a score greater than 145 indicating higher resilience, and that less than 125 indicating low resilience.²³ This scale was translated into Korean by a researcher, a bilingual person back-translated the results into English, and experts evaluated the validity. Internal consistency was 0.92 for adolescents with complex congenital heart disease in Korea,¹¹ while the Cronbach's alpha coefficient for the Resilience Scale was 0.95 in our study.

Quality of life

QOL was measured using the KIDSCREEN-52 QOL Measure for Children and Adolescents (KIDSCREEN-52-QOL). The KIDSCREEN-52-QOL was developed with support from the European Commission. The Korean version of the KIDSCREEN-52-QOL was previously evaluated for internal consistency and validity by Hong et al.²⁴ The KIDSCREEN 52-QOL consists of 52 items scored using a five-point Likert scale. The items covered physical well-being (five items), psychologic well-being (six items), moods and emotions (seven items), social support and peers (six items), parent relationships and home life (six items), self-perception (five items), autonomy (five items), school environment (six items), social acceptance (i.e., bullying) (three items), and financial resources (three items). Higher scores mean higher health-related QOL and well-being. The Cronbach's alpha value for internal consistency reliability for the subitems of this scale was found to be 0.77 to 0.95 for Korean children and adolescents when it was developed²⁴ and 0.94 for leukemia survival adolescents as determined by a different investigation.¹² The Cronbach's alpha coefficient for the QOL was 0.94 in the present study.

Ethical considerations

This study was approved by the Institutional Review Board (IRB No.: KC17QEDI0330) of the hospital where the study was conducted, and all participants provided written informed consent.

Statistical analysis

The Statistical Package for the Social Sciences 20.0 software program (IBM Corp., Armonk, NY) was used to analyze the collected data. Descriptive statistics were calculated for individual characteristics. An independent t-test and analysis of variance were used to evaluate differences in resilience and QOL according to individual characteristics. Pearson's correlation coefficient was used to determine the correlation among resilience; QOL; and subscales of illness cognition such as helplessness, acceptance, and perceived benefits. Hierarchical multiple regression was used to evaluate the impact of illness cognition on resilience and QOL.

Results

Differences in resilience and QOL based on participants' general characteristics

As shown in Table 1, there were significant differences in resilience according to religion status (t = −2.03, p = 0.04) and QOL (t = −2.21, p = 0.03). AYA with religion had better resilience and QOL, compared with AYA with no religion. AYA QOL was significantly different according to paternal educational level; those having a father with a high school education showed lower QOL than did those with a father with higher educational level (t = −2.01, p = 0.05). There were no differences by gender, age in years, school, number of siblings, parent marital status, mother's education level, perceived economic status, diagnosis, and hematopoietic stem cell transplantation of resilience and QOL.

Table 1.

General Characteristics of the Participants and Associated Resilience and Quality of Life, N = 72

Variables	n (%)	Resilience		QOL
Variables	n (%)	M±SD	F/t (p)	M ± SD	F/t (p)
Gender
Male	47 (65.3)	128.87 ± 25.59	0.09 (0.92)	204.13 ± 27.32	0.47 (0.63)
Female	25 (34.7)	128.20 ± 30.84		200.88 ± 28.32
Age in years
13–15	31 (43.1)	133.06 ± 24.46	1.00 (0.37)	204.45 ± 29.74	0.21 (0.81)
16–18	30 (41.7)	123.33 ± 31.11		200.53 ± 28.68
19–20	11 (15.3)	130.64 ± 23.37		205.64 ± 17.49
School
Middle	29 (40.3)	135.65 ± 25.73	1.08 (0.36)	205.72 ± 27.92	0.76 (0.52)
High	27 (37.5)	124.07 ± 29.95		197.89 ± 30.00
College	10 (13.9)	122.90 ± 24.79		211.50 ± 23.54
Others	6 (8.3)	124.83 ± 25.18		198.67 ± 18.85
Siblings
No	13 (18.1)	127.23 ± 23.44	−0.20 (0.84)	203.23 ± 25.59	0.03 (0.97)
Yes	59 (81.9)	128.94 ± 28.27		202.94 ± 28.13
Religion
No	40 (55.6)	122.93 ± 26.84	−2.03 (0.04)	196.78 ± 28.05	−2.21 (0.03)
Yes	32 (44.4)	135.78 ± 26.59		210.78 ± 25.14
Parents' marital status
Married	65 (90.3)	128.75 ± 27.62	0.11 (0.91)	202.72 ± 27.84	−0.26 (0.79)
Divorce or bereaved	7 (9.7)	127.57 ± 26.27		205.57 ± 26.22
Father's education level
≤High school	37 (51.4)	124.76 ± 24.13	−1.25 (0.22)	196.78 ± 26.12	−2.01 (0.05)
College or beyond	35 (48.6)	132.74 ± 30.12		209.57 ± 27.79
Mother's education level
≤High school	39 (54.2)	123.84 ± 126.14	−1.64 (0.11)	199.20 ± 27.20	−1.28 (0.21)
College or beyond	33 (45.8)	134.30 ± 28.98		207.48 ± 27.61
Perceived economic status
Bad	16 (22.2)	134.9 ± 28.37	1.04 (0.36)	210.56 ± 32.47	0.77 (0.46)
Average	49 (68.1)	128.2 ± 27.35		200.73 ± 26.02
Good	7 (9.7)	117.3 ± 23.91		201.57 ± 26.70
Diagnosis
ALL	50 (69.4)	131.42 ± 22.98	1.12 (0.27)	200.36 ± 27.17	11.23 (0.22)
AML	22 (30.6)	122.32 ± 35.07		209.00 ± 27.99
HSCT
No	58 (80.6)	126.19 ± 28.23	1.56 (0.12)	200.97 ± 28.93	1.28 (0.20)
Yes	14 (19.4)	138.79 ± 21.04		211.43 ± 19.28

ALL, acute lymphoblastic leukemia; AML, acute myeloid leukemia; HSCT, hematopoietic stem cell transplantation; QOL, quality of life.

Correlational relationship among illness cognition, resilience, and QOL

Bivariate correlations among illness cognition (i.e., helplessness, acceptance, and perceived benefits), resilience, and QOL are presented in Table 2.

Table 2.

Correlational Relationship Among Illness Cognition, Resilience, and Quality of Life

	Resilience	QOL
Illness cognition
Helplessness	−0.08	−0.36^a
Acceptance	0.53^b	0.69^b
Perceived benefits	0.59^b	0.68^b

p < 0.01.

p < 0.001.

Acceptance and perceived benefits were moderately correlated with resilience (r = 0.53, p < 0.001 and r = 0.59, p < 0.001, respectively), while helplessness was not correlated with resilience. In addition, helplessness showed a weak negative relationship with QOL (r = −0.36, p = <0.01) and acceptance, and perceived benefits exhibited a moderate positive relationship with QOL (r = 0.69, p < 0.001 and r = 0.68, p < 0.001, respectively).

The influence of illness cognition on resilience and QOL in AYA leukemia survivors

Hierarchical multiple regression analyses were conducted to assess the extent to which hypothesized variables predicted resilience and QOL. Religion (dummy variables), father's education level (dummy variables), and the three subcategories of illness cognition (i.e., helplessness, acceptance, and perceived benefits) were inserted into each model because these variables were correlated with resilience or QOL.

Table 3 presents the influence of illness cognition on resilience of AYA leukemia survivors. In model 1, religion and helplessness did not influence resilience, and the explanatory power of this model was 3%. After acceptance was included, the model was significantly improved from model 1, and the explanatory power of model 2 was 23%. In model 3, perceived benefits were entered, the model showed a 7% increase in variance explained (33%), and perceived benefits were a significant variable.

Table 3.

The Influence of Illness Cognition on Resilience in Adolescent Leukemia Survivors

Predictor variables	Model 1	Model 2	Model 3
Religion	0.23	0.12	0.10
Illness cognition
Helplessness	−0.04	0.08	0.08
Acceptance		0.52^a	0.18
Perceived benefits			0.44^a
Adjusted R²	0.03	0.26	0.33

R² change = 0.23/0.07.

p < 0.01.

The influence of illness cognition on QOL in AYA leukemia survivors is suggested in Table 4. In model 1, religion and father's educational level did not have an influence on resilience, but helplessness negatively influenced QOL (the explanatory power was 16%). After acceptance was included, the model was significantly improved from the model 1, and the explanatory power was 49%. Helplessness and acceptance were significant variables. In model 3, perceived benefits were entered, and the explanatory power was 53%. Helplessness, acceptance, and perceived benefits were significant variables.

Table 4.

The Influence of Illness Cognition on Quality of Life in Adolescent Leukemia Survivors

Predictor variables	Model 1	Model 2	Model 3
Religion	0.19	0.05	0.04
Father's education level	0.18	0.08	0.06
Illness cognition
Helplessness	−0.33^a	−0.18^a	−0.17^a
Acceptance		0.62^b	0.37^b
Perceived benefits			0.33^a
Adjusted R²	0.16	0.49	0.53

R² change = 0.33/0.04.

p < 0.05.

p < 0.01.

Discussion

The results in the present study showed that leukemia illness cognition is associated with resilience and QOL in AYA leukemia survivors. Specifically, we found that acceptance and perceived benefits among the illness cognition subcategories were positively associated with resilience and QOL in AYA leukemia survivors. This finding is in line with those of previous studies involving AYA with leukemia¹⁹ and patients with chronic disease.^17–19,25 Hoseini et al.²⁶ postulated that illness cognition was associated with QOL in patients with chronic illness, including cancer patients. Illness cognition in patients with chronic illness strongly affected their physical and mental well-being,²⁶ and illness cognition was influenced by self-esteem.²⁷ Luyckx et al.²⁷ in their study of adults with Type 1 diabetes reported that high levels of problems in diabetes were associated with a more central illness cognition associated with lower levels of self-esteem. Illness cognition can be a mediating factor in the relationship between self-esteem and psychosocial, outcomes including QOL and well-being.²⁷ AYA survivors of leukemia who had higher self-esteem tended to consider themselves independent entities despite having a chronic illness.²⁸

In terms of subcategories, Verhoof et al.¹⁹ found no relationship of perceived benefits and QOL, instead only showing relationships with acceptance and helplessness in young adults with chronic illness since childhood. Consistent with this study, Casier et al.²⁹ insisted that acceptance of illness plays an important role in the daily mood of AYA with cystic fibrosis and diabetes, and van Damme-Ostapowicz et al.³⁰ postulated that acceptance of illness was correlated with QOL and satisfaction with life in patients with malaria. Furthermore, Pakenham and Fleming³¹ suggested that acceptance of illness was associated with life satisfaction, positive affect, and better adjustment in people with multiple sclerosis. It can be the first step to acceptance in people with chronic illness.³² Ambrosio et al.³³ explained life with chronic illness and insisted that acceptance of illness is the first attribute necessary to achieve positive QOL and coping. AYA with chronic illness who accept their disease can establish close and meaningful relationships with peers and adjust fairly well to school life.³⁴ Therefore, it is necessary that a program to help AYA leukemia survivors accept their illness be developed.

The present study showed differences in QOL according to religion and paternal education level among the general characteristics. Having religion was related to a higher level of resilience and QOL. Consistent with this study, children and adolescents with religion tended to have higher QOL than those without religion in the study for children and adolescents with chronic kidney disease.³⁵ Also, breast cancer patients with religion reported higher QOL than those without religion.²⁶ Religion helps people to rely on a superior force to fight against the negative effect of stress and to better manage their disease.²⁶ Higher paternal education level was related with higher AYA QOL in the present study. Consistent with this study, paternal education level influenced the QOL of children with epilepsy.³⁶ However, in a systematic review study that assessed the QOL in children with chronic illness, only one study reported that paternal education level was related to QOL of children with chronic illness.³⁷ It is important to consider that our study involved AYA, and that the severity of the disease might be different from that seen in the systematic review study; also, the difference between children and AYA with chronic disease and the relationship with paternal educational level should be considered as a potential related factors in future research.

Limitations of this study

The present study has some limitations. First, time after treatment was not included as a variable. Time after treatment in AYA survivors of leukemia can be an important influence on resilience and QOL. Further studies for QOL in AYA survivors of leukemia need to consider duration after treatment. Second, no inferences about causal relationships could be made because the data collected were cross-sectional in nature. Moreover, variables used for this study might change over time, and a cross-sectional analysis captures only a snapshot in time. Therefore, the use of longitudinal models would provide a more detailed and advanced examination of study variables. Third, self-reported questionnaire use may overestimate or underestimate adherence rates. Furthermore, the small sample of AYA leukemia survivors considered in this study limits the possibility of drawing firm conclusions; thus, future replication studies of variables related to QOL need to include a larger sample.

Nevertheless, despite the limitations of our study, our research also has some strengths. This study is the first, to our knowledge, to investigate the relationship of illness cognition, resilience, and QOL in leukemia AYA in Korea. Furthermore, this study considered the subcategories of illness cognition and obtained more specific knowledge than did previous studies with respect to illness cognition and its relationship with resilience and QOL.

Conclusion

The present study explored the influence of illness cognition in Korean AYA with leukemia in terms of resilience and QOL in Korea. It found that illness cognition represented a significant impacting factor on resilience and QOL. Our results suggest that acceptance, which is a subcategory of illness cognition, may be an important factor in resilience and QOL in AYA leukemia survivors. Therefore, specific programs should take into consideration the acceptance of disease in AYA leukemia survivors.

Footnotes

Acknowledgments

This research was supported by Basic Science Research Program through the National Research Foundation of Korea (NRF) funded by the Ministry of Education, Science and Technology (NRF-2016R1D1A1B01011002).

Author Disclosure Statement

No competing financial interests exist.

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