Mental health status and associated factors of caregivers of patients with malignant brain tumors

Caregivers of patients with cancer play a crucial role in patient care and symptom management, yet the associated demands can significantly impact their health and quality of life (QOL). Studies indicate that these caregivers’ mental health tends to be more impaired than their physical health [1, 2]. Research on depression among such caregivers is extensive, with Geng et al. [3] reporting that 42.30% experience symptoms of both depression and anxiety. Factors positively associated with caregiver depression and anxiety include the patient’s condition, caregiver burden, caregiving duration, being the patient’s spouse, avoidance behaviors, financial strain, female sex, and age. Conversely, factors negatively correlated with depression and anxiety include higher overall QOL, pre-loss grief, education level, age, a strong sense of coherence, and a close caregiver–patient bond.

Various tools are used to assess caregivers’ mental health, including the Beck Depression Inventory, the Center for Epidemiological Studies Depression (CES-D) scale, the Hospital Anxiety and Depression Scale (HADS), and the Distress and Impact Thermometer (DIT). The DIT, a simple tool developed in Japan, has shown excellent screening capabilities, with a sensitivity and specificity of 0.82, enabling effective identification of suspected adjustment disorders or depression [4]. Asai et al. [5] utilized the DIT to assess caregivers’ mental health status over time. They found that 36% of caregivers visiting outpatient palliative care clinics were suspected of having an adjustment disorder or depression on their first visit. This rate decreased to 27% and 32% at 6 and 13 months following the patient’s death, respectively.

Forst et al. [6] investigated distress and anxiety in caregivers of patients with malignant brain tumors using the HADS and found that 48.3% reported anxiety, while 26.3% experienced distress. Factors linked to anxiety and distress included male sex, higher caregiver burden, caregiver anxiety, patient depression, and caregiving for younger patients. Russell et al. [7] found that caregiver strain and low patient functional well-being contributed to distress in caregivers of long-term survivors of high-grade glioma (HGG) [3].

Although numerous studies have examined the mental health and associated factors of caregivers of patients with malignant brain tumors, the mental health status and influencing factors among caregivers in Japan have not been thoroughly investigated. Therefore, this study aims to assess the mental health status of caregivers of patients with malignant brain tumors using the DIT and to explore the factors influencing their mental health.

Of the 118 caregivers of patients with malignant brain tumors, 115 with complete data were included in the analysis.

We investigated the mental health status and related factors among caregivers of patients with malignant brain tumors using the DIT. Among the caregivers, 43.4% were suspected of having depression, defined as a distress score ≥ 4 and an inconvenience score ≥ 3. A meta-analysis by Geng et al. [3] reported a similar prevalence, with 42.3% of caregivers of patients with cancer experiencing depression and anxiety.

When comparing the suspected and non-suspected depression groups, significant differences were observed in several caregiver-related factors: “age,” “overall comfort in current life,” “worries or stress in daily life,” “problems in caring for the patient,” “tiredness from assistance and care,” and “health-related QOL utility score of the caregiver.” Geng et al. [3] identified factors related to caregiver depression, including the patient’s condition, caregiving burden, caregiving duration, being married to the patient, being unemployed, chronic illness, sleep quality, avoidance behavior, financial problems, and female sex. Conversely, a higher education level, age, sense of coherence, and a strong bond with the patient were reported to reduce the risks of depression. Consistent with prior studies [9, 10], younger caregivers in this study appeared more susceptible to mental health issues, with a higher proportion of suspected depression cases among those aged < 60 years.

Regarding the response to “How do you feel about your current life overall?” caregivers suspected of depression were significantly more likely to report having no spare time. Multiple factors, such as income and time constraints, intricately determine available spare time. Saito et al. reported that a lower household income was linked to increased caregiving time and a higher depression risk [11], while Ochoa et al. [12] found a correlation between lower income and higher distress among caregivers of patients with cancer. Although this study did not specifically measure annual household income or daily caregiving hours, these factors likely influenced the results.

Questions such as “Are you worried or stressed in your daily life?”, “Are you having trouble caring for the patient?”, and “Are you tired from assisting or caring for the patient?” reflected the caregiving burden. Geng et al. [3] similarly associated caregiving burden with depression, consistent with the findings in this study.

Differences in health-related QOL utility scores of caregivers were observed between the two groups. Depression is associated with a QOL decline, which may explain these findings. A systematic review by Tallant et al. found that caregivers of patients with brain tumors had a lower QOL than non-caregivers [13]. Finocchiaro et al. reported lower scores for social functioning, emotional well-being, and mental health on Short Form 36 among caregivers [14]. Similarly, a study by Zang et al. [15] on the health-related QOL of caregivers of patients with cancer reported an average EQ-5D-5 L utility score of 0.71. Significant differences were observed in scores for household income, age, caregiver education level, self-perceived health status, the patient’s Eastern Cooperative Oncology Group performance status, and cancer stage. Litzelman et al. emphasized that caregiver well-being affects the quality of cancer care [16]. Preventing and alleviating caregiver depression is essential for sustaining and improving cancer care quality. Social support significantly influences mental health outcomes in caregivers of patients with brain tumors. Therefore, ensuring access to adequate social support systems is a critical role for healthcare providers [17].

For patient-related factors, significant differences were found in “time since the patient was diagnosed,” “condition of the patient’s brain tumor,” “whether the patient has someone important who will listen to their worries and suffering,” “patient’s health-related QOL utility score,” “patient’s usual activities,” and “patient’s anxiety/depression.” Specifically, a significant difference in “time since the patient was diagnosed” was noted between the two groups; the risk of depression was higher within 1 year and 1–2 years after diagnosis than after ≥ 5 years.

Regarding caregiver mental health status within 1 year of diagnosis, Halkett et al. [18] reported that distress did not decrease in caregivers of patients with HGG 3 and 6 months after diagnosis. Similarly, Forst et al. found that caregiver anxiety and distress persisted 3, 6, and 9 months after diagnosis. Russell et al. [7] evaluated distress in caregivers of patients with HGG diagnosed for ≥ 2 years and found that while most caregivers did not report significant psychological distress ≥ 2 years after diagnosis, 28% experienced moderate-to-severe distress. Factors such as caregiving burden and patients’ low functional well-being were significantly related to caregiver mental distress. However, since this was not a longitudinal study, it is not possible to conclude that the caregivers’ depression risk decreases after 2 years following the diagnosis of a brain tumor. Phillips et al. reported that the causes of distress in both patients with HGG and caregivers change over time [19]. Therefore, it is essential to conduct longitudinal studies with larger sample sizes, considering various factors influencing caregiver mental health, to better understand the progression of caregiver mental health and its influence. Furthermore, a multidisciplinary approach addressing these factors is crucial for improving patient and caregiver mental health.

There was also a significant difference between the two groups regarding concern about the “patient’s brain tumor condition.” The proportion of those with suspected depression who responded “recurrence/progression” and “stable but undergoing treatment” was higher. Webb et al. [20] reported that caregivers experienced significant anxiety about recurrence, which, in turn, exacerbated depression and anxiety. Similarly, Vivar et al. [21] reported that families faced new difficulties and distress following recurrence.

The proportion of caregivers who responded “no” to the question “Do you think there is someone important who will listen to the patient’s worries and suffering?” was higher. Forst et al. [6] identified patient depression and anxiety as factors related to caregiver anxiety and distress. When caregivers believe that “there is someone important who will listen to the patient’s worries and suffering,” it is thought that this belief, or the actual alleviation of the patient’s depression and anxiety, may reduce the caregiver’s risk of depression.

There was also a significant difference in health-related QOL utility scores between the two groups. Studies have reported a correlation between patient and caregiver QOL [22], which aligns with the findings of this study. A lower health-related QOL in patients increases the caregiving burden, subsequently increasing the risk of depression among caregivers. Of the five questions in the EQ-5D-5 L, significant differences were observed in “patient’s usual activities” and “patient’s anxiety and depression.” Previous research has linked patients’ Karnofsky Performance Status scores, anxiety, and depression with caregiver depression, supporting the results observed here [6, 7].

The factors that remained significant after multifactorial adjustment were “whether the caregiver was tired from providing care or caring for the patient” and “the time since the patient was diagnosed with a brain tumor.” While the time since disease diagnosis is an objective parameter, tiredness of caregivers can potentially be influenced by pre-existing depressive features. We need to obtain more detailed medical history from caregivers. However, monitoring these two factors in daily clinical practice is crucial to proactively identify caregivers suspected of having adjustment disorders or depression and to provide appropriate support.

This study’s strengths and limitations are as follows. This is the first study to explore the mental health status and its influencing factors among caregivers of patients with malignant brain tumors in Japan, analyzing a relatively large sample size. However, the study has certain limitations. First, while caregivers of patients with malignant brain tumors were included, factors known to influence caregiver depression and QOL—such as educational background, household income, time spent on caregiving, and caregivers’ health status, including prior history of depression—were not explored. Therefore, their impact remains unclear. We need to clarify this issue for the future study. Second, the cross-sectional design prevents the study from capturing how caregivers’ mental health status evolves following diagnosis, and the factors affecting changes over time could not be examined. Third, considering the number of patients with malignant brain tumors in Japan, the respondents in this study represented only a small portion of caregivers, introducing potential selection bias if caregivers with anxiety or problems were more likely to participate. Fourth, although the survey items were developed in consultation with family nursing experts and brain tumor treatment specialists, leading questions with assumptions may have been included, potentially resulting in biased results. To obtain more accurate responses, we believe that a neutral and open-format survey should be used in the future.

This study assessed the mental health and related factors in 50 caregivers of patients with malignant brain tumors using the DIT. Notably, 43.4% of caregivers were classified as having suspected depression (DIT scores: distress ≥ 4, inconvenience ≥ 3). Factors associated with depression included caregiver age, life satisfaction, daily stress, caregiving challenges, fatigue, and QOL scores, as well as patient-related factors such as time since diagnosis, tumor condition, support availability, activity level, anxiety, and QOL scores.

Due to its cross-sectional design, the study cannot track long-term trends in caregiver mental health. Future longitudinal research is needed to monitor changes over time. Early mental health screening for caregivers is recommended to identify risks for adjustment disorders or depression, thereby enabling timely interventions and tailored support.