Impact of Pediatric Leukemia on Maternal Anxiety, Depression, Sleep Quality, and Physical Activity

Introduction

The role of familial caregivers of people diagnosed with cancer is substantial, as they provide daily emotional, physical, and psychological support [1]. Cancer does not only affect the patient, so its impact must be considered in a broader social context. All diseases, especially chronic conditions, are a specific part of the family structure and become a part of life for its members, often causing irreversible change [2].

Parents are profoundly affected by a child’s cancer diagnosis. Pediatric cancer is an extreme stressor that causes transient, marked distress, with those involved slowly returning to a “new normal” that includes the reality of the illness [3].

The psycho-physical condition of parents of children with cancer differs from that of parents of healthy children, with the former characterized by a proactive approach, tolerance of failure, and reduced persistence, which can affect the quality of life of the whole family. Furthermore, different socio-economic conditions were observed in families with children with cancer compared to families with healthy children [4]. Parental distress has a negative impact on parental quality of life and mental and physical health factors [5], including fatigue, which causes a sense of weakness, insomnia, stress, a reduced capacity for mental and physical activity, and inability to perform occupational and social functions [6]. Parents of children diagnosed with cancer experience psychosocial problems related to their children’s illness and could benefit from training to minimize overprotection and stress [7].

The psychological state is directly related to the physical state. A meta-analysis by Mahindru et al found that, beyond the obvious physical health benefits, physical activity positively affects mental health, with even small amounts providing health benefits [8]. For example, a meta-analysis by Saeed et al suggested that yoga, as monotherapy or adjunctive therapy, has positive effects, particularly on depression. As an adjunctive therapy, it also facilitates the treatment of anxiety disorders, especially panic disorder. Although the optimal frequency and duration of sessions are unclear, a meta-analysis of 16 randomized controlled trials demonstrated a reduction in symptoms with one 60-minute session per week [9].

Murrey et al concluded that people who were more physically active had better sleep quality [10], with moderate and intense physical activity having a positive effect. Physically activity people sleep better and longer than those with a sedentary lifestyle [11].

Ha et al showed that most parents were either sedentary or not meeting the recommended physical activity guidelines [12]. Engaging in regular physical activity may not be a priority for parents, as they are often the primary caregivers and responsible for their child’s health during and after their child’s cancer treatment. Due to the high demands of time and money, providing care that aligns with the identity of being a ‘good mother’ or ‘good father’ may lead parents to prioritize their use of time and money for their child, even at the cost of their own health and well-being. As a result, physical activity may be reduced among parents and their children [13].

In the scientific literature, there are reports on the mental and physical condition of adults and children treated for cancer [14–17]. There are also 2 recent scientific reviews of interventions to improve the mental health of adults with cancer [18,19]. The review by Esbenshade and Ness focused on exercise and diet interventions in pediatric cancer patients [20], and Raber et al studied parental involvement in interventions regarding children’s physical activity or diet [7]. However, the topic of the condition of parents of children diagnosed with cancer is much less studied, despite being an interesting and very important research area. The impact of physical activity on the mental health of parents of children with leukemia is less explored compared to other populations. Therefore, this study evaluated anxiety, depression, sleep quality, and physical activity of mothers of children with leukemia.

Material and Methods

STUDY GROUP:

Participants were selected using a random number generator. The study involved 57 mothers (mean age of 40.04±7.45 years) of children with leukemia. The inclusion criteria were having a child aged <18 years diagnosed with lymphoblastic or myeloid leukemia, mother’s willingness to participate in the study, and consent to publication of the results. We excluded mothers with a serious chronic disease that significantly reduces the quality of life, and psychiatric treatment in the dose escalation phase. Participants were informed about the aim of the study and the possibility to withdraw at any stage.

Data collected from mothers regarding their children included diagnosis, treatment duration, and treatment protocol. Fifty-two (91%) children were diagnosed with lymphoblastic leukemia and 5 (9%) with myeloid leukemia, with treatment protocols dependent on the diagnosis. Lymphoblastic leukemia was treated with the AIEOP2017POLAND protocol, and myeloid leukemia was treated with the AML-BFM2019 protocol. All mothers participated in the project during the stay of their children in the hospital ward. Among the children, 63.8% had ALL-B, 12.07% had ALL-T, 12.07% had AML, and 6.89% had no information available. Regarding treatment efficacy, 79.31% of children had a positive response to treatment, 10.34% had recurrence, 1.72% had secondary leukemia, 1.72% had no success, and 6.91% had no information available. All participants were residents of Lower Silesia, Poland.

ETHICS STATEMENT:

The research was conducted using a survey questionnaire without any intervention or experimental structure, and it was conducted in accordance with the Helsinki Declaration and under the ethical and legal supervision of the Department of Physiotherapy of the Wrocław University of Health and Sport Sciences (approval no. 23/2023). All participants gave written informed consent to participate in the study.

The data were obtained at the “Cape of Hope” (“Przylądek Nadziei”) – Supraregional Center of Pediatric Oncology Center in Wrocław using questionnaires handed out to parents in the wards. The respondents completed standardized questionnaires independently using the instructions attached to them. The request to complete the questionnaire was addressed to mothers only, as they tended to be most involved in caring for the child in the hospital during treatment.

The participants completed the author’s survey questionnaire regarding basic sociodemographic data, Euro Quality of Life Questionnaire (EQ-5D), State-Trait Anxiety Inventory (STAI), Beck Depression Inventory (BDI), International Physical Activity Questionnaire (IPAQ), and Pittsburgh Sleep Quality Index (PSQI).

Before completing the questionnaire, the participant read information about the study’s aim and procedure and consented to participate in the study by marking the appropriate answers on the form. The survey questionnaire included questions about age, weight, height, gender, place of residence, education, marital status, number of children, and the child’s diagnosis.

EURO QUALITY OF LIFE QUESTIONNAIRE (EQ-5D): EQ-5D is a standardized survey of the Polish population. It uses a descriptive system comprising 5 dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. Each dimension has 5 levels, including no problems, slight problems, moderate problems, severe problems, and extreme problems. Patients are asked to indicate their health state by ticking the box next to the most appropriate statement in each of the 5 dimensions. These results can be assessed as separate factors or combined into a 5-digit number that describes their health state. The EQ-5D visual analog scale (VAS) records the patient’s self-rated health on a vertical VAS, where the endpoints are labeled “The best health you can imagine” and “The worst health you can imagine” [21]. This questionnaire is validated and commonly used in Poland [22]. The Cronbach’s alpha coefficient for EQ-5D is 0.8 [23].

STATE-TRAIT ANXIETY INVENTORY (STAI): The STAI is a commonly used measure of trait and state anxiety used in clinical settings to diagnose anxiety and distinguish it from depressive syndromes. It is also often used in research as an indicator of caregiver distress. STAI has 20 items for assessing trait anxiety and 20 for state anxiety, with all items rated on a 4-point Likert scale from “Almost Never” to “Almost Always”. Respondent are asked to indicate the statement that best corresponds to their condition. The present study evaluated state anxiety. Questionnaire X-1, in which anxiety is understood as a state, assesses current mood (eg, concerns, worrying, nervousness, tension). Answers to questions 21, 26, 27, 30, 33, 36, and 39 have reverse scoring (1 is 4, 2 is 3, 3 is 2, and 4 is 1). The scores of all 20 questions are added together, and depending on the patient’s age and gender, a sten is assigned according to the specific scoring tables. Scores of 1–4 indicate low anxiety, 5–6 average anxiety, and 7–10 high anxiety. The Cronbach’s alpha coefficient for the STAI X-1 depending on age is 0.89–0.92 [24].

BECK DEPRESSION INVENTORY (BDI): The BDI is a 21-item self-report rating inventory that measures characteristic attitudes and symptoms of depression. All items are rated on a 4-point Likert scale (0–3), with higher scores indicating more severe depressive symptoms. A score of 0–11 shows no depression, 12–19 shows mild depression, 20–25 shows moderate depression, and 26–63 shows severe depression [25]. The first 13 questions reveal cognitive and affective symptoms (eg, guilt, loss of satisfaction, pessimism, sense of failure, lowering of basic mood). Subsequent questions are related to somatic symptoms associated with mood disorders (eg, loss of weight, loss of libido, loss of appetite, sleep disturbances, body image distortion). The Cronbach’s alpha coefficient for the DBI is 0.91.

INTERNATIONAL PHYSICAL ACTIVITY QUESTIONNAIRE (IPAQ): The IPAQ assesses the physical activity of adults and has a long and short version (this study used the short version). It contains 7 questions about all types of physical activity related to everyday life, work, and leisure. Information is collected on time spent sitting, walking, and time devoted to physical activity, either intensive or moderate. Any physical activity can be expressed as MET-min/week, and a score is derived by multiplying the coefficient (walking – 3.3; moderate activity – 4.0; intensive activity – 8.0) assigned to this activity based on the number of days per week and the minutes completed per day. Based on the results obtained, respondent physical activity is classified as: (1) high (3 or more days of intense physical activity totaling at least 1500 MET-min/week or 7 or more days of any combination of exercise exceeding 3000 MET-min/week); (2) sufficient (3 or more days of intense physical activity for no less than 20 minutes per day; 5 or more days of moderate exercise or walking for no less than 30 minutes per day, 5 or more days of any combination of physical activity exceeding 600 MET-min/week); and (3) insufficient (people who did not demonstrate any physical activity or did not meet the conditions for sufficient and high levels) [26]. This measurement has shown reliability and validity within different contexts, including the Polish population [27]. The results of the standardized Cronbach’s alpha test showed values between 0.63 to 0.85 [28].

PITTSBURGH SLEEP QUALITY INDEX (PSQI): The PSQI is a widely used self-reporting questionnaire that assesses sleep quality over a 1-month time interval. It is a valuable tool as it captures multiple dimensions of sleep, including subjective experiences and objective parameters. Nineteen individual items generate 7 “component” scores: subjective sleep duration, sleep latency, sleep quality, habitual sleep efficiency, daytime dysfunction, use of sleeping medication, and sleep disturbances. The sum of scores for these 7 components yields 1 global score. A global PSQI score below 5 means poor quality of sleep and 5 and above means good quality of sleep [29]. This questionnaire has established validity and reliability, including studies conducted within the Polish population [30]. The overall Cronbach’s alpha for the global PSQI score is 0.74 [31].

STATISTICAL ANALYSIS:

Descriptive statistics were used to represent the study group. After meeting the requirement of normality of distribution (the Shapiro-Wilk test was performed) and homogeneity of variance (the Levene’s test was performed), one-way analysis of variance (ANOVA) was applied to compare groups with different levels of physical activity, and Pearson’s correlation was used to establish the relationships between the psycho-physical condition indicators. A significance level of P=0.05 was established. All statistical analysis employed Statistica 12 (StatSoft, Inc., OK, USA), and the G*Power program determined sample size (n=57, effect size=0.4, power=0.75).

Results

BASIC SOCIODEMOGRAPHIC DATA:

The study group was characterized by age, body mass index (BMI), number of children, education, marital status, and place of residence, as shown in Table 1.

EQ-5D:

Individual and collective results were obtained from the EQ-5D questionnaire, with the response distribution presented in Table 2. The mean total score was 7.21±1.94, and the medium EQ-VAS result was 77.32±17.87.

STAI, BDI, IPAQ:

The mean raw score of the STAI questionnaire (sheet X-1) was 43.91±10.44, and converting into stens (depending on the mothers age) the mean score was 5.45±2.03 years. The severity of depression symptoms (BDI) was 14.25±9.11, and physical activity level (IPAQ) was 2010.82±2668.03 METs. According to PSQI, 36.84% of respondents had good sleep quality and 63.16% had poor sleep quality. Detailed results from STAI, BDI-II, PSQI (component scores: for subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleeping medication, and daytime dysfunction), and IPAQ are presented in Table 3.

Table 4 contains the mental state indicators divided into groups depending on the level of physical activity of the respondents.

CORRELATIONS:

The results showed strong correlations between BDI score and EQ-5D total (0.72; P<0.05), BDI score and day dysfunction (PSQI subscale) (0.65; P<0.05), BDI score and EQ-5D pain/discomfort (0.61; P<0.05), and BDI and EQ-5D anxiety/depression (0.61; P<0.05).

There were moderate correlations between BDI score and EQ-5D VAS (−0.58; P<0.05), STAI-X2 raw score and BDI score (0.54; P<0.05), BDI score and sleep disturbance (PSQI subscale) (0.51; P<0.05), BDI score and PSQI total (0.51; P<0.05), BDI score and EQ-5D usual activities (0.47; P<0.05), EQ-5D total and day dysfunction (PSQI subscale) (0.43; P<0.05), EQ-5D total and PSQI total (0.43; P<0.05), and EQ-5D anxiety/depression and PSQI total (0.4; P<0.05).

No strong correlations were found between the level of physical activity and the other mental health indicators examined (a very weak correlation was found between the level of physical activity and EQ-5D VAS [0.27; P<0.05] and a weak inverse correlation with day dysfunction [−0.37; P<0.05]).

Discussion

The percentage of people reporting problems in specific areas of EQ-5D and EQ-VAS was close to population norms [32]. However, published reports using other scales to examine the quality of life of parents of children with cancer show a lower quality of life compared to population norms [33–35]. Perhaps our findings are a result of undertaking research in a hospital that is at the forefront of pediatric cancer treatment in Europe. As such, parents felt taken care of by the center, which minimized the impact on their overall quality of life. However, the concept of quality of life is multidimensional and dependent on many factors, and worse functioning is usually reported by people with anxiety and depressive symptoms.

The present study found higher levels of anxiety, stress, depression, and hopelessness in mothers of children with leukemia compared with parents of healthy children or children with other chronic illnesses or disabilities [36–38]. Based on the results obtained (standardized questionnaires) and comparing them with reports from other sources, the psycho-physical condition of parents of children diagnosed with cancer is poor. Most respondents (57%) had depressive symptoms (BDI-II), 70% had average or high anxiety (STAI-X1), 63% had poor quality of sleep (PSQI), and 38% had an insufficient level of physical activity (IPAQ). Only the results of EQ-5D, referring to quality of life, were close to population norms. Other studies showed that family members could be described as cancer co-sufferers. Caring for children with cancer causes extensive stress for parents and can negatively affect their physical and mental well-being [39–42]. A meta-analysis by Jacobson and Newman indicated that anxiety affects the severity of depression and vice versa [43]. This correlation was also confirmed in our research.

Long-term hospital stays, especially at the beginning of treatment, disturb parents’ daily functioning. Typically, a change in lifestyle is observed among parents of children with cancer, and they very often stop participating in activities and sports they previously practiced. During treatment, parents do not usually engage in physical activity, and their daily functioning is primarily related to the desire to ensure the comfort of their children. The studied parents had different levels of physical activity. It was assumed, based on the literature [44–46], that the differences in physical activity undertaken would determine the mental state. Indeed, parents with a high level of physical activity had the lowest level of depressive symptoms. As such, a tendency for depressive symptoms to decrease with increasing levels of physical activity was observed. A study by Song et al concluded that parents of pediatric cancer survivors had low levels of physical activity, usually of low intensity [47]. In the present study, most respondents had insufficient physical activity.

Additionally, a trend of decreasing BDI-II scores with increasing levels of physical activity was observed. A study by Brüchle et al confirmed that physical activity, as an intervention, can normalize deficient neuroplasticity, which is correlated with reduction of clinical symptoms [48]. A meta-analysis by Teychenne et al concluded that supervised and unsupervised physical activity interventions effectively reduced depressive symptoms among adults without clinical depression (both genders and diverse weights) [49].

The literature indicates a relationship between the level of physical activity and sleep quality [50,51]. Caregivers reported significantly higher PSQI total scores than published norms of healthy adults, indicating poorer sleep [30]. Sleep problems are also prevalent in parents of children with cancer. Sleep problems were identified in around 50% of parents during outpatient treatment of their children, and up to 70% in parents of children hospitalized for stem cell transplants [6,52–57].

Our research did not show statistically significant differences in sleep quality based on physical activity level. However, a changing trend was observed in the results obtained. A systematic review by Wang and Boros concluded that moderate physical activity produces better sleep quality than vigorous exercise [58]. The review focused on healthy individuals.

Unexpectedly, there was no correlation between physical activity level and mental status indicators. This relationship is confirmed by articles reporting populations of healthy people. Mental and physical health are interlinked and mutually influential [59]. For example, there is a relationship between poor physical health and mental illness, such as depression and anxiety, as well as mental health disorder risk [60–62]. Mosher et al showed that caregivers of people with lung cancer had physical and mental health below population norms. Most caregivers reported negative emotional effects of caregiving, and over one-third reported negative physical health effects, with mental health more strongly associated with life changes than physical health [63]. A study by Shaffer et al on colorectal cancer patients and their caregivers showed a deterioration in the health of caregivers within 1 year after diagnosis, with caregivers’ physical health declining most noticeably among those reporting poor mental health at diagnosis and among patients who reported having poor physical health at diagnosis [64]. Ross et al studied patients with prostate cancer and their spouses (romantic partners, married and unmarried) found a decline in caregivers’ physical health after diagnosis. Furthermore, spouses reported significantly worse physical health than patients at each time point (1, 6, and 12 months after diagnosis). The average mental health scores of spouses did not change substantially over this period, but their scores were significantly lower than those of patients at each of the time points [65]. However, our literature search found no articles describing this relationship, or lack thereof, among parents of children diagnosed with cancer.

Our research and an article by Wakefield et al confirmed the relationship between the occurrence of depressive symptoms and poor sleep quality [66]. A narrative review by Pano et al reported a bidirectional relationship between health-related quality of life and unipolar depressive disorder [67], which is consistent with the results of our research. A review by Bojarska et al emphasizes the critical role of sleep in depressive disorders. Sleep significantly impacts the severity and progression of depressive disorders. Bright light therapy and sleep deprivation offer promising alternatives to conventional treatments [68].

Our present results agree with those of Matsui et al [69] regarding the relationship between sleep quality and quality of life. Interestingly, they also suggested that subjective sleep quality was significantly associated with both mental and physical quality of life and that sleep duration was significantly associated with mental health. The present study and the available literature indicate that anxiety affects depression severity and vice versa. Results from a meta-analysis by Jacobson and Newman suggested that all types of anxiety symptoms predicted later depressive symptoms, and all types of depressive symptoms predicted later anxiety symptoms. Additionally, all types of diagnosed anxiety disorders predicted all types of later depressive disorders, and all depressive disorders predicted later anxiety disorders [43].

The current study had several important limitations. First, we did not consider treatment time or time elapsed since diagnosis in the study group, which could impact the factors examined. Due to the limited time available to conduct the research and the associated risk of not reaching enough subjects, we decided to waive this inclusion criterion. Second, the study only included mothers of children with cancer since very few fathers stayed permanently with their children in the hospital. Third, only mothers of children diagnosed with leukemia (the most common pediatric cancer) participated in the study, and the results apply to leukemias and cannot be generalized to all childhood cancers. Including other diagnoses in the study could, instead of expanding the available data, distort them due to different treatment methods and different survival rates, which could affect the parent’s mental condition. Fourth, physical activity data were self-reported via the IPAQ, which can be biased and may over/underestimate true values. Fifth, we did not assess the mental and physical conditions of the participants before starting the study.

Future research should consider the limitations described above. The mental and physical health of parents of children diagnosed with cancer has certainly not been exhausted and requires further research. Also worthy of attention is the examination of interventions aimed at improving the situation of the studied group. Furthermore, scientifically proven solutions should be introduced as the standard of care for families of children diagnosed with cancer.

Conclusions

Mothers of children diagnosed with leukemia tend to have poor mental health (decreased quality of life, increased level of anxiety, depressive symptoms, and poor quality of sleep), regardless of their level of physical activity. The present study provides important information about the psycho-physical state of parents of children with cancer. The findings have implications for public health professionals, government, and future research.

Public health professionals should take an interest in the mental health of parents of children with cancer to prevent or treat anxiety and depression and improve their quality of life and sleep.