The main results of our present study are: (1) More than half of all neuro-oncological patients reported to suffer from a moderate or severe interference of their illness with their social activities and family life. (2) 17.9% of patients with malignancies of our cohort had minors and averaged 1.5 underage children at the time of tumour diagnosis. (3) Patients with minors and malignant neurooncological tumours have less interference of their disease with social activities, less psycho-oncological distress, better future prospects, a better general health status and quality of life in the present cohort.
Research on the frequency of underage children of cancer patients and the psycho-oncological and social burden that parents with neuro-oncological cancer face is comparatively limited. Our study is the first to evaluate the prevalence of minors among patients with malignant neuro-oncological tumours, which we found to be 17.9%. These results are consistent with previous findings that indicate between 14% and 24.7% of cancer patients have minor children, depending on the age range of the sample (Inhestern et al. 2021). However, these studies did not specifically focus on malignant neuro-oncological tumours, but rather cancer in general.
We hypothesized that parents of minors with cancer would face a heavy burden in terms of their psycho-oncological and social well-being. A systematic review of the impact of cancer on the mental health of parents with teenage children included a total of 54 articles from 36 different studies. The review found that between 7% and 83% of patients met criteria for probable clinical depression, while 19–88% met criteria for probable anxiety disorders (Johannsen et al. 2022). The authors concluded that the disease and its consequences have a significant impact on the mental health of parents who are suffering from cancer with children (Johannsen et al. 2022). These findings are supported by a previous study not included in the review: a multi-institutional, prospective cohort study with 668 patients with advanced cancer who were parenting with dependent children and those who were not. Patients with minors were found to be significantly more worried, more likely to meet the criteria for panic disorder diagnosis, and less peaceful (Nilsson et al. 2009). However, it should be noted that these studies can only be compared with our present analysis to a limited extent. Specifically, they included cancer patients in general, focused more on psycho-oncological rather than social parameters, and some studies did not compare cancer patients with and without children (Johannsen et al. 2022).
Our study also showed that patients had a disease-related limitation of quality of life, social life and family life. Approximately 25% of all patients and cancer patients reported an unfavourable overall health condition in the past week. 24% of the entire cohort and 40% of the patients with malignant tumours rated their quality of life in the week prior to their appointment as ‘poor’. In addition, more than half of the patients and 65% of those with cancer experienced moderate or severe interference of their illness with their social activities and family life. The majority (85%) of patients with malignancies expressed uncertainty about their future, and half (50%) reported a worsened outlook for the future. However, our findings differ from the aforementioned results. Our patients suffering from malignant neuro-oncological tumours who have underage children reported significantly less interference of their disease with social activities, less psycho-oncological distress, better future prospects, a better general health status and quality of life when compared to cancer patients without dependent children. In our study, minor children or having a family life with minor children appeared to be a resource rather than a burden. This result is also consistent with previous results: Ernst and colleagues assessed how cancer patients' quality of life changed over time, using a questionnaire during treatment (T1) and two years later (T2) (Ernst et al. 2012). The study compared two groups: patients with children under 18 years (n = 41) and those without children (n = 28). Both groups reported low quality of life at T1, but at T2, the group with children reported better quality of life on most dimensions. However, the authors discussed that being female and having a partner might have a greater impact on quality of life than being a parent (Ernst et al. 2012). In a previous study conducted in the Netherlands, it was shown that cancer patients with dependent children aged between 4 to 18 years experienced reduced but improved psychosocial functioning over time, and reported less stress compared to the general population (Gazendam-Donofrio et al. 2008). However, a comparison group of cancer patients without dependent children was not included in this study. We are unable to fully explain the differences in study results regarding whether children are a burden or a resource for parents with cancer. Several explanations are conceivable. Firstly, different types of cancer can have varying effects on the impairment of quality of life and social and family functioning, and most studies have included cancers in general (Gazendam-Donofrio et al. 2008). Our study, on the other hand, specifically focused on neuro-oncological diseases, and we have observed that radiotherapy and oral chemotherapy, which are often used in malignant neuro-oncological diseases, are relatively well tolerated, particularly in the initial stages (Berger et al. 2021; Rapp et al. 2018). Secondly, our study focused more on social and family impairments, while other studies have concentrated more on psycho-oncological distress. Thirdly, the study by Ernst and co-workers and our study were conducted in the same region, and regional, cultural factors and family ties may play an important role in quality of life, family, and social life. Lastly, both studies used the same instrument, namely the EORTC-qlq-C30 questionnaire (and in our study, we also used the EORTC-qlq-BN20 questionnaire) to measure quality of life, social, and family impairments. However, other studies have often employed different instruments, such as the SF-8.
Modern treatment for neuro-oncological patients goes beyond anti-tumour therapy and should address all aspects of the total pain concept, including physical, psychological, social, and spiritual complaints. Palliative medicine is no longer solely viewed as end-of-life care, but rather as an early intervention to complement actual tumour therapy. The goal of therapy is ´to prevent and relief “suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual” (World Health Organization 2002). Social and family life burden are important factors to consider in preventing and treating suffering. Social issues encompass various aspects of care and engagement in both social and professional spheres. A recent study revealed that approximately 70% of individuals diagnosed with WHO°2 and °3 glioma, following surgery and adjuvant treatment, were able to reintegrate into the workforce. The median duration until resuming work was 8 months (Senft et al. 2020). In addition to multidimensional treatment including social issues and implementation of patient-centred outcome parameters, it is essential to understand the prevalence of neuro-oncological patients with young dependents impacted by these illnesses to develop supportive measures that can assist patients and their families in managing the many challenges they may face. Further studies and new treatment approaches should address social and family life dysfunction of neuro-oncological patients.
Limitations
We acknowledge several limitations of our present analysis. Firstly, all the data were derived from a retrospective, single centre study. Secondly, sample size calculation was lacking, but as a retrospective cohort was identified, post-hoc sample size calculation would be unusual. Future prospective studies should include a sample size calculation to draw more confirmative conclusions. Since the aim of the analysis was to determine the frequency of social and family stress on neuro-oncological patients, we have not performed a multivariate analysis, created a clinical prediction model for quality of life, nor have weassessed the burden carried by underage children. Thirdly, the present analysis compromised a very heterogeneous patient collective. We did not analyse if and how different diagnoses and treatment protocols may affect the assessed parameters such as quality of life, social activities, or family life. Likely, the different disease stages, such as following first-line treatment, during follow-up, or end-of-life care, may differently affect psycho-oncological and social burden. Fourthly, the data arose from a tertiary neuro-oncological centre in Central/Eastern Germany. The geographical area from which we drew our patients is partially rural, resulting in considerable distances between patients' homes and the neuro-oncological center. The region was part of the former German Democratic Republic and a former communist country with a sometimes-lower socio-economic status than other regions of Europe. Thus, findings in this population cohort are not necessarily transferable to other regions in Europe and worldwide. Again, regional, cultural factors, and family ties may play an important role in quality of life, family, and social life. Fifthly, in this study, we pooled the quality of life at different points in the course of the disease, as opposed to tracking quality of life, social and family life over time in individuals, as done in other studies (Ernst et al. 2012). Certainly, the timing point of the illness will have an impact on social and family life, as well as quality of life. Sixth, we examined the social and family burden of cancer patients, particularly those with minor children. We did not differentiate whether the parent was the mother or the father. However, affected mothers and fathers may have different levels of burden. Finally, while our study focused on evaluating the social life, family functioning, and quality of life of neuro-oncological patients with and without dependent children, we did not assess the distress experienced by the children themselves. To gain a more comprehensive understanding of the impact of neuro-oncological diseases on families, future studies should examine the burden of the disease on both the patients and their children. Such studies could shed light on the unique challenges faced by families affected by neuro-oncological diseases and help inform the development of more effective support and care strategies.