Examining the Mental and Behavioral Health Vulnerabilities of Child Cancer Survivors

This Report Supports MindArch Health’s Work with the A Moment of Magic Foundation

Originally published at: https://www.expresscreateheal.com/research

Overview

Childhood cancer can increase one’s risk of developing negative mental health symptoms and relates to treatment exposure and ‘physical late effects’ (Brinkman, et. al, 2018). However, screening tools on symptomology alone may be inadequate as “many survivors have comorbid externalizing symptoms and social difficulties” (Morris et. al, 2021). Children and adolescent survivors are significantly more likely to have symptoms of anxiety and depression, inattention, antisocial behavior, and impaired social competence compared with siblings (Brinkman, et. al, 2016). “A recent systematic review indicated that 13% to 29% of adolescent survivors experience problems with psychological distress and emotional functioning” (Brinkman, et. al, 2016). It is not only acknowledged as a significant life event but physical latency, scarring, disfigurement, and other physical health attributes create a compound stress impact on the patient. Specific disorders of the central nervous system (CNS) are shown to increase this risk further according to several studies.

The neurodevelopmental consequences of pediatric cancer and its treatment refer to potential adverse effects on a child's cognitive, emotional, and physical development. These consequences can include cognitive deficits, emotional challenges, and physical impairments resulting from cancer and its treatments. The fear circuitry in the brain plays a significant role in post-traumatic stress symptoms (PTSS) and post-traumatic stress disorder (PTSD), and childhood cancer survivors may experience similar brain changes due to their experiences. These effects can have long-lasting impacts on a child's quality of life. 

Psychosocial support, counseling, and mental health interventions are often needed to help children and families cope with the emotional toll of pediatric cancer. However, stigma and lack of mental health education can impact referrals, self- and family advocacy and access to appropriate care. Comprehensive care teams, including pediatric oncologists, neurologists, psychologists, and educational support professionals, are essential for addressing these consequences. Ongoing research is needed to understand the mechanisms behind psychiatric outcomes in pediatric cancer survivors.

One study found a high prevalence of psychiatric disorders in pediatric cancer patients, with special phobia disorder, enuresis disorder, obsessive-compulsive disorder, and separation anxiety disorder being common. Gender differences were not significant, and the type of malignancy did not seem to be associated with emotional and behavioral disorders.

Pediatric cancer survivors often experience cognitive, emotional, and psychological difficulties, which can have long-term effects. Advances in pediatric cancer treatment have increased survival rates, but these survivors need tailored support and interventions to address their unique needs. Mental health education to break down stigma and misperceptions, psychosocial screening and mental health care are crucial aspects of comprehensive care for these patients. A study also found that childhood cancer survivors have a higher rate of medical visits for mental health issues compared to the general population.

In terms of the brain's fear circuitry, changes in the amygdala, ventromedial prefrontal cortex, anterior cingulate cortex, and hippocampus can contribute to the development of PTSS and PTSD in pediatric cancer populations. Alterations in functional connectivity between these brain regions can affect emotional regulation and make youth more vulnerable to emotional psychopathology. The dorsal anterior cingulate cortex shows hyperactivity in youth with PTSS/PTSD and childhood cancer survivors, and this hyperactivity may be related to neurotoxic effects from cancer treatments or compensatory mechanisms.

Research suggests that childhood cancer should be considered a form of early threat, and the impact of cancer and its treatments on brain development needs to be better understood. Factors like individual differences, genetics, and posttraumatic growth can also influence psychosocial outcomes in pediatric cancer survivors. Longitudinal research is essential to distinguish the effects of adversity from those induced by cancer treatments. 

Preventing mental and behavioral health problems in children with cancer involves a comprehensive approach to evaluate risks, needs and strategies that support the promotion of mental wellness through protective factors that buffer against the unique challenges faced by this population. This process of identifying positive solutions aimed at this population requires influence and context from multiple perspectives and multi-level stakeholders as well as data-driven insights to support decision making in preventive measures. 

Vulnerabilities 

At MindArch Health, we have identified 10 categories of vulnerability related to increased risk of developing a mental or behavioral health disorder. To further explore these areas as they relate to children with a diagnosis of cancer or pediatric survivors of cancer, research studies were explored. These insights can support the task force in identifying high-risk populations that need more attention when designing proactive preventive interventions. 

1. Risky Behavior & Community Risky Behavior

Utilizing national registries and investigating causes of death in patients diagnosed with cancer before 20 years of age and comparing it to a cohort of age, sex and country matched populations, a study by Korhonen et. al, 2019, found that childhood cancer patients have an increased risk of risky behavior-related causes of death compared to the general population. This review found that children with cancer were more likely to engage in binge drinking and drink alcohol more frequently than those without a cancer diagnosis as well as reporting an increase in suicidal ideations with only 20% receiving follow-up care that included a risk assessment. The review concludes the importance of integrating psychological support and therapy in the follow-up care of these patients (Korhonen et. al, 2019).

2. Serious Life Events

An Australian study (Morris, et. al, 2021) was the first to analyze developmental outcomes in childhood cancer survivors using longitudinal population data. The results indicate that these survivors face increased developmental vulnerability in terms of physical health and wellbeing. The study highlights the impact of cancer treatment on physical readiness for school, physical independence, and motor skills. 

The findings align with previous research indicating that children undergoing cancer treatment experience impaired physical functioning, reduced strength, and compromised motor skills, which may persist throughout their lives, limiting their physical independence.

They concluded that, “Following an early cancer diagnosis, children may require targeted care to support their physical health and wellbeing. Geographic variation in developmental outcomes indicates remoteness was a protective factor and requires further investigation. (Morris, et. al, 2021)”

3. Household Dysfunction & Family Mental Illness/Substance Use

A meta-analysis study (van Warmerdam et. al, 2019), conducted in accordance with PRISMA guidelines, explored four databases to identify articles discussing the prevalence of mental health disorders, such as anxiety, depression and PTSD, in parents of children with cancer.

The articles that met the inclusion criteria found that parents of children with cancer do have a higher prevalence of anxiety, depression and post-traumatic stress disorder; however, the reported prevalence of mental illness was highly variable and did not come to a comprehensive conclusion.

The researchers suggested that, “To better understand the risk of long-term mental illness in this population and target interventions, future studies must adhere to standardized reporting and methods (van Warmerdam et. al, 2019).”

Childhood cancer is a highly stressful experience for both parent and child, and can ultimately disrupt family dynamics and affect all of its members. Long’s study revealed that there is considerable variability across families, the most reported disruptions in routine and family life, realignment of roles and threats to employment status. In addition, some families report marital struggles and a decline in the quality of parenting. 

The study (Long et. al, 2011) concludes that, “family functioning, marital quality, and parenting may shift in some families following a child’s cancer diagnosis. “Although our review considers these constructs separately, leading theories suggest that they function as a constellation of factors with reciprocal influence. In this regard, emerging evidence shows that family functioning and parenting predict parent mental health in the context of childhood cancer.” (Long et. al, 2011)

4. Learning & Development Problems

Children with learning and development problems who are undergoing cancer treatment have unique psychosocial needs. “Recent research has revealed that cancer is not less frequent in people with an intellectual disability and some tumors are more common. This population has different risk factors for developing cancer and different needs for both medical and psychosocial care provision. Consequently, medical surveillance, diagnosis procedures and treatments often have to be modified to suit this population. (Merrick, 2011)”

A review of the literature “found that adults with IDD [intellectual and developmental disabilities] experience or may be at risk of experiencing inequities at various points along the cancer continuum, including cancer screening, diagnosis, treatment and mortality. (Stirling, et. al, 2021)”

It is also important to note that children undergoing and recovering from cancer treatment may experience psychosocial changes including impairments that benefit from assessment and may require specialized approaches. 

5. Abuse, Neglect, Violence & Post-Traumatic Stress 

Most studies focus on the role of health behaviors in relationship to cancer, however, significant evidence in a 2009 study by Fuller-Thomson and Brennenstuhl reveals evidence of child abuse in relationship to cancer risk that was also demonstrated by Felliti et al in 1998 with fewer controlled factors. They report, “this research was able to demonstrate that the relationship between physical abuse and cancer remained highly stable and significant, even after controlling for age, sex, and race in addition to 3 types of risk factors: childhood stressors, adult health behaviors, and adult SES.” (Fuller-Thomson, Brennenstuhl, 2009)” 

6. Economic Disadvantage & Homelessness 

A cross-national qualitative study (Carmichael et. al, 2021) conducted in Austria, Greece, Spain and the United Kingdom, collected data through semi-structured interviews. The data included 69 participants who were either experiencing homelessness, with and without direct ties to cancer diagnoses, as well as health and social care professionals.

The exploratory design of this study allowed researchers to gain a holistic and thorough investigation of all the homeless participants’ experiences, however the voluntary nature of gaining participation may not include those who are homeless and do not engage with organizations or services. Carmichael also notes that although the study conducted may not represent a fully diverse population, and is not indicative of patterns represented in other nations or populations.

The five main themes that were gathered from the interviews included “health needs of people experiencing homelessness, barriers to accessing healthcare, facilitators to accessing healthcare, experiences and understanding of cancer prevention and treatment, and considerations for programme intervention.” (Carmichael et. al, 2021) It is found that there is much overlap and consistency when it comes to the healthcare needs of homeless people.

Homelessness

During a 2021 study (Fan et. al, 2022), the National Cancer Policy Forum of the National Academies of Science, Engineering and Medicine sponsored a series of webinars that addressed social determinants of health, including housing insecurity, and how it relates to cancer patient outcomes. 

Fan’s article summarized the formal presentations and discussions from the webinars, and noted the 4 broad pathways through which housing insecurity may impact health in the forms of stability (not having a stable home), quality (poor housing conditions), affordability (difficulty paying mortgage, rent, etc.) and the neighborhood context (access to parks, exposure to crime, etc.). The evidence suggests “complex relationships between housing and health over the life course within each of these 4 pathways.” (Fan et. al, 2022)

Financial Burden

A cross-sectional survey (Evans et. al, 2023) of caregivers of children with cancer assessed household material hardship (HMH), financial toxicity, and income change. 

Previous reports of financial disparities following a cancer diagnosis was the basis for this study, and found that HMH, financial toxicity, and income loss are prevalent after a child’s cancer diagnosis. Additionally, the study concluded that the financial hardships mostly affect low-income individuals as well as those from Hispanic descent. 

The study concludes that, “Further research is needed to elucidate the roles of work flexibility and social support, how safety net services are utilized by families, and how best to support families with HMH.” (Evans et. al, 2023)

7. Chronic Illness & Toxin Exposure

Changes to certain genes within the body can cause cancer, and lead to dysfunction in our cells. Although some genetic changes occur naturally and are not due to environmental factors, there is evidence to suggest that exposures to certain toxins may cause damage to the DNA and thus cause cancer.

Oo’s research (2018) discusses multiple different cancer-causing agents, or carcinogens, and the different effects they have on our cells and bodies. As much as the article discusses how dangerous exposure to such toxins can be, the author advises us to not become obsessed with being exposed, but offers us nutrients that restores apoptosis and may resolve abnormal cell death when exposed to toxins.

The article states that, “Just as the chemicals that cause cancer do so by multiple mechanisms, natural products offer multiple, overlapping, and complementary approaches to cancer prevention. By becoming familiar with the major cancer-inducing and cancer-promoting toxic influences in your world, you can then develop a supplement regimen that covers all five mechanisms by which we know that toxins and radiation induce cancerous changes.” (Oo, 2018)

More than 87,000 chemicals have been approved for commercial use, however, just over 1,000 of them have been formally examined for their carcinogenic potentials. A majority of us are exposed to toxins and environmental toxins in relatively low levels on a daily basis, but the researchers encourage us to be mindful about our exposure to certain chemicals in our everyday lives. (Cohen et. al, 2019)

8. Poor Access to & Quality of Supportive Relationships 

It appears from all studies that children with cancer and child survivors of cancer have sufficient access to quality supportive relationships. The studies differ with regard to the quality of peer relationships given interruptions and opportunities for social engagement and connection. 

Social connectedness among youth with cancer remains aligned with aged norms according to Pahl, et. al, 2021. However, in another study, “Participants’ cancer experiences were shaped by their previous experience of life, which included deprivation, loneliness, and a lack of autonomy and power. They depended on others to negotiate contact with the outside world, including the healthcare system (Tuffrey, et. al, 2009).” This dependence may shape their relationships differently than healthy peers and also suggests the importance of better understanding peer experiences for CCS.

To flush this discrepancy out with a subgroup (acute lymphoblastic leukemia survivors), another study by Katz et al, 2011 observed children with cancer and their peers in play. They noted an increase in disengagement, fewer relations, which may correlate with experiences of anxiety and may be less noticeable to adults rating their interactions (Katz, et.al, 2011). It is important to continue to evaluate peer interactions, social connectedness and relatedness for CCS.

9. Discrimination, Bullying, Peer Pressure & Stigma

Research (Ernst, et al., 2017) investigating four different forms of cancer furthers the idea that health stigmatization among cancer patients can lead to factors that increase the risk of mental illness. Factors include social isolation, psychological and compliance issues, and persistent stigmatization. “In many cases, the consequences of cancer-related stigmatization are even more distressing than the illness itself (Ernst, et al., 2017).”

Children with cancer may be more susceptible to bullying given changes to their appearance, learning interruptions and social inconsistencies as a result of their treatment (Collins et. al, 2019. Self-reported rates may be higher than adult or teacher reports because their experiences may be particularly in contrast with the supportive nurturing environment of pediatric medical environments treating cancer and from loved ones according to this study. This may also indicate a lack of awareness from adults (Collins et. al, 2019) regarding their experiences and may warrant screening and attention within this population to ensure quality care and attention to their self-esteem. 

The presence of stigma surrounding mental health intervention for children with cancer has led to a perception that they may not be psychiatrically "sick enough" to warrant treatment (Sheikhan et al., 2023). A qualitative study involving 22 individuals who had experienced mental health challenges revealed that children often do not view themselves as sufficiently unwell to actively seek treatment. This perspective can discourage providers from offering necessary services and treatment. A significant portion of the study's participants expressed feeling situated in a "gray area" concerning their mental health diagnoses. Consequently, they often receive a limited diagnosis that may not effectively address their specific needs. Subsequently, participants reflected on the changes needed to foster more open mindedness towards receiving personalized mental health treatment.

While mental health issues are widespread among the youth, a substantial number goes untreated. Radez (2021) provides an in-depth exploration of the reasons behind both seeking and avoiding mental health treatment for children, offering insights into addressing this care gap. The research identifies a lack of proper education on mental health and the process of seeking help as a primary factor. Additionally, issues of access are mentioned, with concerns related to peer and community stigma, strained relationships with professionals, and the challenge of a young person trusting a new individual.

In the group that demonstrated a lack of seeking mental health because of stigma, it was found that the youth saw consequences in receiving treatment in the fear that they will lose status in a peer group, being taken away from a parent, and making their family upset or angry in their decision. (Radez et. al, 2020) In this case, interventions in the education of the importance of seeking help is integral to improving the percentage of children who choose to receive mental health treatment. 

10. At-risk demographics & Genetic Background 

Minority populations are more susceptible to mental and behavioral health problems given the intersectionality of environmental, societal, social and economic factors. For people undergoing cancer treatment, people of different race and ethnicity experience different rates of morbidity and mortality. “Overall, Black and Asian/Pacific Islander children had a higher risk of death compared with non-Hispanic White children” according to Aristizabal et. al, 2021. “Black children had a higher risk of death from germ cell tumors, hepatoblastoma, and nonrhabdomyosarcoma soft tissue sarcomas. (Aristizabal, et. al, 2021)”

Given US insurance practices, adolescents and young adults face a heightened likelihood of experiencing interruptions in insurance coverage, making them particularly susceptible to the influence of health insurance on overall health outcomes including access and use of mental health services (Perez et. al, 2018). A large study involving cancer patients recorded in the Surveillance, Epidemiology, and End Results database from 2007 to 2014 revealed significant variations in survival rates linked to health insurance status among adolescents diagnosed with acute lymphoblastic leukemia, acute myeloid leukemia, and Hodgkin lymphoma. 

“Studies of cancer survivors among the sexual and gender minority community have also shown that they are more likely to have poorer health behaviors and outcomes than their nonminority peers, including higher levels of psychological symptoms; poorer health-related quality of life; greater anxiety, depression, and posttraumatic stress disorder; greater fear of recurrence; challenges accessing quality care; and higher cancer-specific mortality rates (Dean, et. al, 2023).

Conclusion

The identified vulnerabilities in children with a diagnosis of cancer or pediatric survivors of cancer encompass a diverse range of factors, each contributing to the overall complexity of their well-being. The literature reviewed sheds light on the intricate interplay between physical health, mental health, family dynamics, societal factors, and genetic backgrounds. These vulnerabilities highlight the need for a comprehensive and multidimensional approach to care, recognizing that addressing one aspect may have a cascading effect on others. The EQUIP Model can support A Moment of Magic in their mission to reduce these risks and change the outcomes for the youth and families they support. 

The research underscores the significance of proactive preventive interventions, with a particular emphasis on the integration of psychological support and therapy in the follow-up care of children with cancer. It is evident that the challenges extend beyond the medical aspects of cancer treatment, encompassing social, economic, and environmental dimensions. Moreover, the studies emphasize the importance of standardized reporting and methodologies in understanding the prevalence of mental health disorders in parents of children with cancer.

Additionally, the findings emphasize the need for targeted care to support the physical health and well-being of childhood cancer survivors, recognizing the impact of cancer treatment on developmental outcomes. The disparities in experiences related to homelessness, economic disadvantage, discrimination, and bullying call for tailored interventions that address the unique needs of this population.

Overall, the research reviewed provides a comprehensive understanding of the vulnerabilities associated with childhood cancer, offering valuable insights for healthcare professionals, policymakers, and support organizations. Moving forward, a holistic and integrated approach that considers the multifaceted nature of these vulnerabilities is essential to enhance the quality of life for children with cancer and improve long-term outcomes for survivors. Using the EQUIP Model, teams can use data insights to create targeted interventions aimed at strengthening proven protective factors within a supportive ecosystem. 

Discussion

Neurodevelopmental consequences of pediatric cancer and its treatment refer to the potential adverse effects on a child's cognitive, emotional, and physical development resulting from the disease itself and the various therapies used to treat it. These consequences can have a long-lasting impact on a child's quality of life. 

Many children with cancer experience cognitive deficits as a result of the disease and its treatment. Chemotherapy, radiation therapy, and surgery can all affect the developing brain, leading to issues with memory, attention, and academic performance. Children may need educational support and specialized services to address these challenges.

The brain's fear circuitry plays a critical role in PTSS/PTSD, and childhood cancer survivors may experience similar brain changes due to cancer or its treatment (Marusak, 2019). Understanding these changes could help improve treatment and support for young cancer survivors. 

Pediatric cancer and its treatments can be emotionally and psychologically taxing for both the child and their family. Anxiety, depression, and post-traumatic stress symptoms are not uncommon. Psychosocial support, counseling, and mental health interventions are often needed to help children and families cope with the emotional toll of cancer.

Surgery, chemotherapy, and radiation therapy can cause physical impairments in pediatric cancer survivors. These may include motor deficits, hearing loss, vision problems, or other complications that affect the child's physical development and overall well-being.

Cancer and its treatments can interfere with a child's growth and development. This may result in delayed puberty, short stature, and other growth-related issues. Endocrine and growth hormone treatments are sometimes used to address these concerns.

Some children may experience long-term neurocognitive late effects, which can manifest years after their cancer treatment has ended. These effects can include difficulties with executive function, processing speed, and working memory, and may impact their ability to achieve their full potential in various aspects of life.

Children who have experienced cancer may face social challenges due to their history of illness. They may have difficulty fitting in with their peers, dealing with feelings of isolation, or experiencing stigma related to their cancer history.

The overall quality of life for pediatric cancer survivors can be significantly impacted by the neurodevelopmental consequences. It's essential to provide ongoing medical and psychosocial support to help these children and their families adjust to life after cancer.

Childhood cancer survivors have an increased rate of mental health visits, with demographic factors playing a more significant role in risk than specific treatments. It is crucial to provide mental health resources and support for survivors, especially for those treated during childhood or adolescence. Further research is needed to understand the mechanisms behind severe psychiatric outcomes in these individuals.

To address these consequences, comprehensive care teams for pediatric cancer patients often include pediatric oncologists, neurologists, psychologists, rehabilitation specialists, and educational support professionals. Early intervention, regular monitoring, and targeted interventions are essential to mitigate the long-term impact of pediatric cancer and its treatments on a child's neurodevelopment.

A study conducted in Iran (Zahed, et. al, 2020) focused on pediatric cancer patients admitted to a children's hospital and found a high prevalence of psychiatric disorders in this group. Using a standardized checklist, the study found that 89.2% of these children and adolescents had at least one psychiatric disorder, which is significantly higher than the rates observed in similar studies in India and Bangladesh. The most common psychiatric disorders identified included special phobia disorder, enuresis disorder, obsessive-compulsive disorder, and separation anxiety disorder.

Gender differences in psychiatric disorder prevalence were not significant, except for major depressive disorder, which was more prevalent in girls. The type of malignancy did not show an association with emotional and behavioral disorders. Age at the time of the study, age at diagnosis, and duration of treatment also did not appear to be linked to psychiatric disorders (Zahed, et. al, 2020).

The study (Zahed, et. al, 2020) highlights the importance of conducting psychiatric assessments for children with malignancies and other chronic diseases. Identifying and managing these disorders can improve the overall quality of life for these patients. However, the study has some limitations, including the absence of a comparison group and the use of self-report tools. Future research should address these limitations to gain a more comprehensive understanding of the prevalence and nature of psychiatric disorders in pediatric cancer patients.

Advances in pediatric cancer treatment have increased survival rates significantly, with nearly 90% of children surviving for at least five years after diagnosis (Marusak, et. al, 2018). However, these cancer survivors often experience long-term effects related to the disease and its treatment, such as cognitive, behavioral, and emotional difficulties. These issues have primarily been attributed to the impact of cancer treatments on the developing brain. The role of childhood adversity in pediatric cancer, particularly the experience of a life-threatening disease and invasive medical procedures, has been largely overlooked in neuroscientific research (Marusak, et. al, 2018). 

Existing studies have shown that other forms of childhood adversity, like violence and abuse, significantly impact neural development and increase the risk of psychological problems (Marusak, et. al, 2018). The adversity experienced by pediatric cancer patients and their families, beginning at the time of diagnosis, involves emotional turmoil, physical discomfort, and disruptions to daily life (Marusak, et. al, 2018). Survivors often exhibit cognitive and emotional problems, including anxiety, depression, and posttraumatic stress symptoms. Similar to individuals exposed to other forms of childhood adversity, these psychological issues can emerge years later, reflecting a latent biological vulnerability mediated by changes in brain structure and function (Marusak, et. al, 2018). 

A paper by Marusak (et. al, 2018) discusses the impact of childhood cancer on neurodevelopment and psychological outcomes. While many children with cancer experience symptoms of anxiety, depression, or post-traumatic stress, pediatric cancer survivors generally function well despite the challenges they face. The paper emphasizes the need for research to identify how childhood cancer affects neural development and psychological well-being. 

The authors (Marusak, et. al, 2018) highlight the importance of considering early threat exposure as a critical factor in understanding the long-term effects of childhood cancer. They suggest that early interventions can be crucial in preventing neurodevelopmental and psychological issues from becoming chronic.

As the number of pediatric cancer survivors is expected to increase, the medical and research communities are urged to provide empirically-based services and interventions to address survivors' needs. 

Social vulnerabilities and access to care issues play a role in children with cancer or child survivors of cancer receiving mental health treatment. Children with cancer may face an increased risk of bullying due to changes in appearance, disruptions in learning, and social inconsistencies resulting from treatment (Collins, 2019). The stigma related to a diagnosis of cancer can increase one's risk of a mental illness (Ernst, et al., 2017).

Self-reported rates of bullying may be higher among children compared to adult or teacher reports, potentially due to a lack of awareness among adults about their experiences (Collins, 2019). A qualitative study by Sheikhan (2023) suggests that children with mental health challenges often don't see themselves as unwell enough to actively seek treatment, creating a barrier to necessary services. 

A broader issue is the widespread untreated mental health issues in youth, with reasons including a lack of education on mental health, concerns about access, and fears of social and familial consequences for seeking treatment, emphasizing the need for interventions to address these barriers (Radez, 2021). Perceived stigma may be a cause of lower quality of life and higher levels of mental illness among cancer patients and cancer survivors. Perceived stigmas may cause the patient to believe their cancer may have been preventable (Gonzalez & Jacobsen, 2012).

Further, existing literature focuses on adults, thereby neglecting the mental health issues faced by children (Heflinger, 2010). Given the majority of mental health problems emerge in early childhood and adolescence, there is a critical need to examine the stigmatization associated with seeking early treatment and the reasons why families often refrain from pursuing it. 

Mental health education is important to reduce stigma and misinformation commonly associated with seeking mental health evaluation and treatment. Psychosocial screening and mental health care are essential aspects of the comprehensive care provided to pediatric cancer patients. Throughout a child's cancer journey, validated screening tools are employed to assess the emotional well-being of both the child and their family, identifying risk factors for mental health issues such as anxiety, depression, and post-traumatic stress, and breaking down barriers to prevention and treatment. 

Support services, including counseling, child life specialists, and support groups, offer crucial emotional support, while integrated care ensures that psychosocial needs are addressed alongside medical treatment. Pediatric oncology programs emphasize education, advocacy, and the continuity of psychosocial support into survivorship. Ongoing research seeks to improve our understanding of psychosocial challenges in pediatric cancer and develop more effective interventions to enhance the well-being of children and their families throughout and beyond cancer treatment.

A study by Barrera et. al, 2020 aimed to assess the impact of an intervention that involved sharing psychosocial risk information with the treating team of children diagnosed with cancer and its effect on the mental health of their caregivers. The study also examined self-reported outcomes for a small sample of patients and their siblings. Families were randomly assigned to either the intervention group, where the treating team received a summary of psychosocial risk, or the control group, which did not receive such a summary. Caregivers completed measures of depression and anxiety, as well as psychosocial risk, shortly after diagnosis and again six months later.

The study (Barrera et. al, 2020)  found that there was no significant difference in caregiver depression symptoms between the intervention and control groups at the six-month follow-up. However, when considering the initial psychosocial risk, caregivers in the intervention group showed improvements in depression and anxiety scores compared to the control group, especially when their psychosocial risk was high near the time of diagnosis. The impact of the intervention on patients and siblings was inconclusive. In summary, sharing psychosocial risk information with the treating team had a measurable impact on caregiver mental health outcomes, but only if they had high initial psychosocial risk. This study contributes to the understanding of how psychosocial screening and resources can be used to improve outcomes for families dealing with childhood cancer.

In a study involving over 4,000 childhood cancer survivors (CCS), it was found that they had a 34% higher rate of medical visits for mental health issues compared to the general population. More than 40% of survivors had at least one mental health visit, with 90% of these visits involving family physicians and psychiatrists (Nathan, et. al, 2018). Female survivors and those who were treated during adolescence had more frequent mental health visits.

CCS often experience post-traumatic stress, anxiety, depression, and fears of cancer recurrence. However, many adolescents in need of mental health services after cancer do not receive them, indicating an underestimation of the true burden of psychological issues (Nathan, et. al, 2018). While emergency department visits and hospitalizations were less common, CCS had a 13% higher risk of severe mental health events, although suicides were rare (Nathan, et. al, 2018).

The study (Nathan, et. al, 2018) also revealed that younger children diagnosed with cancer were more likely to experience severe psychiatric events later in life. The reasons behind these mental health issues in CCS appear to be related to the cancer experience itself rather than specific treatments. Factors like age, sex, and socioeconomic status played a significant role in determining the risk of mental health problems.

Depression and anxiety were common psychiatric outcomes in CCS, and there was a small but statistically significant elevated risk of psychotic disorders. The study had some limitations, including the inability to capture patients who did not access mental health care or who sought care from non-physician professionals.

Marusak (2019) explains that the neural circuitry for fear involves several key brain areas, including the amygdala, ventromedial prefrontal cortex (vmPFC), anterior cingulate cortex (ACC), and hippocampus. They say, studies have shown that individuals with post-traumatic stress symptoms (PTSS) or post-traumatic stress disorder (PTSD) exhibit hyperactivity in the amygdala, even in childhood trauma-exposed individuals without PTSS/PTSD, suggesting that early trauma exposure alters amygdala processing. This altered amygdala response may be the starting point for the development of PTSS/PTSD according to these experts. Furthermore, childhood cancer survivors with higher cancer-related PTSS show increased centrality of the amygdala in functional connectivity, particularly related to re-experiencing PTSS (Marusak, 2019). 

Additionally, it is noted that there are alterations in the functional connectivity between the amygdala and the vmPFC/ACC, which are crucial for emotion regulation (Marusak, 2019). These alterations may predispose youth to emotional psychopathology according to these experts. Reduced volume of the vmPFC/ACC is also associated with PTSS/PTSD, and these volumetric reductions seem to be a result of symptom development rather than the exposure itself (Marusak, 2019). Smaller hippocampal volumes are commonly found in adults with PTSD, but in children and adolescents with PTSS/PTSD, hippocampal volumes do not differ significantly from healthy controls. However, stress exposure in youth with PTSD can lead to age-related decreases in hippocampal volumes, indicating a latent vulnerability to psychopathology  (Marusak, 2019).

The dorsal anterior cingulate cortex (dACC) shows hyperactivity in youth with PTSS/PTSD and childhood cancer survivors  (Marusak, 2019). The dACC is involved in threat appraisal, fear expression, and various cognitive and emotion-related processes. This hyperactivity may reflect compensatory mechanisms to regulate cognitive and emotional processing in the context of trauma exposure or neurotoxic effects from cancer treatments  (Marusak, 2019).

These findings suggest that the neural circuitry involved in fear-related processing plays a critical role in the development of PTSS/PTSD in pediatric cancer populations  (Marusak, 2019). However, some aspects specific to pediatric PTSS/PTSD have not yet been explored in pediatric cancer populations.

According to researchers, Children are now surviving pediatric cancer at unprecedented rates, marking a success in modern medicine (Marusak, 2018). However, it's increasingly recognized that the effects of cancer and its treatments extend beyond physical health, leading to cognitive, emotional, and psychological challenges like attention issues, anxiety, and posttraumatic stress symptoms. While the neurotoxic impact of cancer treatments on brain development has been well-documented, the role of childhood adversity in the context of pediatric cancer has been largely overlooked in neuroscience research  (Marusak, 2018). This adversity includes facing a life-threatening disease and enduring invasive medical procedures. Despite differences from more commonly studied childhood adversities like violence and abuse, both share the common element of threat exposure. The combination of early threat and cancer treatments is believed to affect neural development and subsequently impact cognitive, behavioral, and emotional outcomes. This paper reviews existing neuroimaging research on survivors of childhood cancer, identifies knowledge gaps, introduces a novel neurobiological framework characterizing childhood cancer as a form of early threat, and outlines directions for future research.

Psychosocial outcomes can depend on external factors such as socioeconomic status, race, neighborhood quality, and other types of threat exposures, as well as individual differences in coping strategies and personality traits (Marusak, 2018). Understanding how the early cancer experience differs from or is similar to more commonly studied forms of early threat, like violence or abuse, may provide insights into factors that mediate outcomes according to Marusak (2018). These research studies further highlight the importance of family and social support, which differs between these experiences.

Furthermore, Marusak (2018) mentions that adversity-related changes in the brain may be independent of psychopathology, and some changes may reflect latent vulnerabilities to psychological problems. They point out that genetic factors and individual differences play a substantial role in outcomes, with specific genetic polymorphisms linked to cognitive and behavioral outcomes in pediatric cancer survivors.

Some adversity-related changes may be adaptive in the short term but maladaptive in the long term, highlighting the need for longitudinal research (Marusak, 2018). Many pediatric cancer survivors report positive psychological changes, including posttraumatic growth (PTG), which may relate to resilience and positive adjustment outcomes (Marusak, 2018). Understanding the neural basis of PTG could help improve outcomes for survivors who do not experience it (Marusak, 2018).

There are significant challenges in researching the neurodevelopmental consequences of childhood cancer, specifically the difficulty in distinguishing between the effects of adversity and those induced by cancer treatments (Marusak, 2018). Researchers highlight the need to simultaneously measure cancer drug exposure and adversity to better understand neurodevelopmental changes and their cognitive, behavioral, and emotional consequences (Marusak, 2018).

Marusak (2018) recommends assessing the frequency and severity of early threats within the group of pediatric cancer patients. They acknowledge the ongoing evolution of research on childhood adversity and its potential to inform pediatric cancer research.

Implications

Applying the discussed risks for Childhood Cancer Survivors to preventive practices that reduce those risks requires an understanding of the interplay between the risk factors and the unique needs of each population served, their capacity, available resources, and access to care teams. 

While the medical model has been a longstanding standard of care with significant contributions to treatment and recovery, it has limitations in reducing the rates of mental illness through symptom identification, diagnosis, and treatment alone. Successful primary prevention public health strategies, as seen in diseases like diabetes and heart disease, provide a promising template for application to mental health. This shift toward a preventive approach holds the potential to address the root causes and risk factors, offering a more comprehensive and proactive strategy for promoting mental well-being.

The MindArch Health team is uniquely suited to make recommendations for population mental health promotive strategies to reduce risks and reverse rates of mental health problems in high-risk populations given the extensive research to design a model (EQUIP), a socio-ecological framework. 

The EQUIP model improves targeted interventions and optimizes resources to increase population stress resilience by: 

1. assessing risks and well-being needs, 

2. analyzing and interpreting findings, 

3. identifying and strengthening protective factors, and 

4. strategically planning for sustainable organizational change

Why don’t population preventive models already exist? 

Safeguarding the mental and behavioral well-being of children with cancer necessitates a thorough assessment of risks, needs, and strategies (Wakefield et. al, 2010). This approach aims to foster mental wellness by emphasizing protective factors that mitigate the distinct challenges encountered by this group. The identification of positive solutions tailored to this population involves input and perspectives from various stakeholders across different levels. Additionally, data-driven insights play a crucial role in informing decision-making for preventive measures.

The absence of existing comprehensive models for preventing mental and behavioral health problems in children with cancer can be attributed, in part, to complexity, difficulty unifying stakeholders, and limited prevention outcome data. The complexity of the intersection between cancer and mental health poses a unique challenge. Developing models that effectively address the specific needs and risks of this population requires a deep understanding of both medical and psychological domains (Friedman et. al, 2006).

Moreover, the collaboration and coordination needed among diverse stakeholders, including healthcare professionals, researchers, educators, and policymakers, can be logistically challenging. Establishing a unified approach that incorporates insights from multiple perspectives is a complex task, often hindered by existing silos within these different sectors.

Additionally, the limited availability of robust, longitudinal data on the mental health outcomes of children with cancer may impede the development of data-driven models. Comprehensive models rely on accurate and extensive data to inform preventive measures effectively (Abed et. al, 2000).

Why is it necessary to reduce risks through prevention? 

Reducing risks through prevention is imperative due to the vulnerabilities highlighted in this report, indicating that the childhood cancer population is particularly susceptible to mental and behavioral health problems. The unique challenges faced by these young individuals, including the physical and emotional toll of cancer treatment, can contribute to a heightened risk of psychological issues.

Prevention becomes crucial as it addresses the root causes and potential risk factors before they escalate into more severe mental health challenges. By implementing preventive measures, we can create a protective environment that buffers against the impact of these vulnerabilities. This proactive approach not only enhances the overall well-being of children with cancer but also minimizes the long-term psychological effects that may arise from their cancer experience. 

Moreover, considering the interconnectedness of physical and mental health, prevention aligns with a holistic approach to healthcare. It recognizes that mental well-being is integral to the overall health of these individuals and seeks to establish a foundation for resilience and coping strategies.

Implementing preventive interventions not only contributes to the well-being of individuals in the childhood cancer population but also offers significant benefits in terms of resource optimization, cost savings, and a reduced burden on healthcare systems.

1. Resource Optimization (Gafni et. al, 2011, Le et. al, 2021)

Preventive interventions are inherently proactive, focusing on addressing risk factors before they escalate into more serious mental and behavioral health problems. By identifying and mitigating these risks early on, resources can be strategically allocated, preventing the need for extensive and costly treatments that may be required in the absence of preventive measures. This optimized resource allocation ensures that healthcare resources are used efficiently and effectively.

2. Cost Savings (McDaid et. al, 2019, Maciosek et. al, 2010)

The economic burden associated with mental and behavioral health issues is substantial yet under-resourced. Preventive interventions aim to reduce the incidence and severity of these problems, thereby potentially lowering the overall economic burden on healthcare systems, families, and the larger society. Investing in prevention can lead to long-term cost savings by minimizing the need for intensive interventions and long-term care.

3. Reduced Burden on Healthcare (Enns et. al, 2016, Campion et. al, 2012) 

Preventive interventions contribute to reducing the demand for mental health services and specialized care. By addressing risk factors early, the prevalence of severe mental health issues decreases, resulting in a lower demand for emergency services and hospitalizations. This, in turn, alleviates the burden on healthcare facilities, allowing them to focus on critical cases and improving overall healthcare system efficiency.

4. Improved Productivity and Quality of Life (Barry et al., 2013) 

Beyond healthcare costs, preventive interventions positively impact productivity and quality of life. By promoting mental wellness and resilience, individuals in the childhood cancer population are better equipped to lead fulfilling lives, participate in education and work, and contribute positively to society. This, in turn, has broader societal benefits, including economic productivity and social well-being.

How can A Moment of Magic’s, Express Create Heal program reduce risks? 

The Express Create Heal (ECH) program through A Moment of Magic (AMOM), a non-profit organization, aims to improve access to the coping skills that can reduce the risk of mental and behavioral health problems for the child survivors of cancer whom they serve. Childhood cancer survivors generally report good life satisfaction, but certain groups are at high risk for psychological distress and poor health-related quality of life (Zeltzer et. al, 2009). It is important to address these needs through early intervention, as newly diagnosed cancer patients experience a decline in mental health status over time, with initial psychological status and psychosocial factors being predictive of subsequent adaptation (El et. al, 1989).

The programming at AMOM-ECH was created using a collaborative team of medical advisory members, child psychologists, mental health experts, social workers, child life specialists, medical professionals, and family members who have been affected by childhood cancer. 

The approach is built on principles of peer-led programming, shown to improve mental wellbeing by increasing mental health promoting behaviors as evidenced by programs such as The Health and Recovery Peer Program (Druss et. al, 2010). 

Alignment with the MindArch Health 5-Elements Framework

The AMOM-ECH workshops align with the MindArch Health 5-Elements of Wellbeing Framework, with regard to psychological health and protective factors that are proven in research studies to address the risks associated with mental and behavioral health disorders. The ECH program currently aligns with the 5-Elements Framework in the following ways:

Secure

• Peer facilitators provide an open environment to share vulnerably

• Peer facilitators are trained to understand and validate the hardships, adversities, traumas, and emotional pain associated with childhood cancer and validate their experiences

• Peers are trained to create a relaxed and open environment free to share vulnerably.

Regulate 

• Youth are taught mindfulness based stress reduction techniques 

• Youth are provided with the strategies to create calming tools (i.e. cool down box) and instructed on how to use calming techniques outside of the workshops 

• The environment provides space to decompress when distressed by removing oneself from a stimulating environment to a quiet and calm space

• Peer facilitators are trained in co-regulation strategies to support distressed participants  if they consent to support

Value 

• Peer facilitators are trained to observe and label the strengths of youth

• Peer facilitators are trained to label and validate the identity of youth beyond their cancer diagnosis

• The environment is conditioned to provide opportunity for youth to express their value through arts

Decide

• Peer facilitators coach youth in self-determination to empower autonomy and increase self-confidence

• Peer facilitators coach youth in self-advocacy to empower youth to become more self-aware and access support as needed 

• Youth are encouraged to take the lead to explore their thoughts and feelings through expressive arts curiously and creatively avoiding internalization and opening opportunity for dialogue and shared experiences

Relate

• Peer facilitators use a common language to relate to the youth and families

• College age of the peer facilitators (18-24) can be more relatable by providing a shared time of life with many of the youth

• Peer facilitators engage in a shared power relationship providing active listening and opportunities for self-expression

The AMOM-ECH programming establishes an environment, encompassing both culture and climate, dedicated to meeting the wellbeing requirements of a vulnerable group – childhood cancer survivors. Its aim is to foster resilience, mitigate risks, build a supportive network, and enhance transferable and sustainable coping and calming skills. This comprehensive approach is designed to help these survivors effectively navigate and manage the inevitable stressors arising from the adversities they have encountered and will encounter in the future. 

Through application of the EQUIP Model, AMOM demonstrates a commitment to evaluating the complex wellbeing needs of this population and strengthening protective factors within the 5-Elements Framework that are proven to reduce risks of mental health problems. This dedication reflects a proactive approach toward addressing the multifaceted problems faced by the population that most often go unsupported (Perez et al., 2018).

Summary

Children are surviving pediatric cancer at remarkable rates due to advancements in modern medicine. However, the early cancer experience can have long-term negative effects on cognitive, behavioral, and emotional functioning. These effects are often attributed to the damaging impact of cancer treatments on brain development. It's essential to recognize the role of pediatric cancer as an early threat experience and its connection to childhood adversity. Despite existing research showing that exposure to various childhood adversities affects neural development and increases the risk of psychological issues, this aspect has been largely overlooked in neuroscientific literature.

The absence of comprehensive models may stem from the intricate nature of the intersection between cancer and mental health, challenges in multi-stakeholder collaboration, and limitations in data availability. Addressing these hurdles is crucial for the development and implementation of effective preventive strategies for this vulnerable population.

The necessity to reduce risks through prevention stems from the vulnerabilities identified within the childhood cancer population. By addressing these vulnerabilities proactively, we can foster a healthier and more resilient mental state for these young individuals, promoting a comprehensive approach to their well-being.

Preventive interventions not only enhance the well-being of children with cancer but also offer tangible advantages such as resource optimization, cost savings, and a reduced burden on healthcare systems. The proactive nature of prevention aligns with a sustainable and holistic approach to healthcare, emphasizing the importance of early intervention for long-term positive outcomes.

Definitions

1. Fear Circuitry: Our brain has a fear circuit that includes four main parts: the amygdala (detects threats and fear responses), the ventromedial prefrontal cortex (vmPFC) and the anterior cingulate cortex (vACC) (help with controlling and reducing fear), the hippocampus (helps with memory and context), and the dorsal anterior cingulate cortex (dACC) (involved in learned fear).

2. Amygdala Hyperactivity: People with post-traumatic stress symptoms (PTSS) or post-traumatic stress disorder (PTSD) often have an overactive amygdala, even if they experienced trauma as children. This suggests that childhood trauma can make the amygdala more sensitive to emotional information, making individuals more prone to PTSS/PTSD.

3. Emotion Regulation: The connection between the amygdala and the vmPFC/vACC is vital for controlling fear and emotions. Changes in this connection might make young individuals more susceptible to emotional problems. However, no studies have looked into the impact of childhood cancer on emotional regulation.

4. vmPFC Volume: The size of the vmPFC/vACC is smaller in youth with PTSS/PTSD, especially those experiencing flashbacks. This part of the brain is crucial for fear control. It seems that this size reduction is related to the development of symptoms rather than the trauma itself.

5. Hippocampus Changes: In adults with PTSD, the hippocampus (responsible for memory) is smaller than in healthy individuals. In children with PTSS/PTSD, there aren't significant differences in hippocampal size compared to healthy peers. But over time, the hippocampus tends to shrink in children with PTSS/PTSD, which might be due to long-term exposure to stress.

6. dACC Activity: The dACC, which is responsible for processing threat and learned fear, is more active in youth with PTSS/PTSD. This could contribute to heightened fear responses. Childhood cancer survivors also show increased dACC activity, potentially as a way to compensate for damage in other brain areas caused by cancer treatments or stress.

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A Special Acknowledgement to our 4 research assistants from Stony Brook University for their support on this project: Casimir Isaacs-Corcoran, Julia Rizzo, Uzair Mahmud, Javeria Mubarik

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