Characterizing the Effects of Misinformation Regarding Pediatric Cancer in the High School Setting

This thesis is dedicated to the Vanderbilt Hematology/Oncology Team.

Acknowledgements

I would like to express my appreciation for my field of study advisor, Brenda Royal, English teacher, Ellie Wiggins, mentor, Scott Borinstein M.D. PhD., and peers for assisting me with formatting my research and revisions.

Abstract

This thesis primarily focuses on the implications of misinformation surrounding pediatric cancer. Cancer education is rapidly changing because of the internet and social media but this creates the opportunity for misinformation to spread from the increased quantity of unreliable sources. Pediatric cancer does not only affect the patient’s physical health but also affects their emotional well-being and relationships. Prior research focuses on psychological sequelae of pediatric cancer but fails to give further insight into the social strain caused by diagnosis. Because of the world’s aging population, cancer will continue to become a more prevalent disease. Everyone needs to be familiar with cancer’s consequences to provide the best possible care for patients. The research focuses on high school students’ perceptions of pediatric cancer and their general understanding; research found that peers with more first-hand experience with cancer were more comfortable with social situations with a pediatric cancer patient implying that familiarity could reduce social strain.

Table of Contents

Acknowledgements iii

Abstract iv

Table of Contents v

List of Tables and Figures vii

Chapter One: Introduction 1

Research Question 1

Background Information 1

Purpose of Study 2

Definition of Terms 2

Chapter Two: Review of Literature 4

Psychological Consequences of Pediatric Cancer 4

Misinformation about Pediatric Cancer 6

Mass Media Portrayal of Cancer 6

Cancer Statistics 7

Conclusion 8

Chapter Three: Methodology 9

Research Approach 9

Survey Description 9

Source Selection 10

Data Analysis 10

Chapter Four: Results & Discussion 12

Grouping 13

Survey Findings 14

Chapter Five: Conclusion 20

References 22

Appendix 25

Survey Questions 25

List of Tables and Figures

Figure 1, Respondent Demographics 13

Figure 2, Misconception Belief Percentage 15

Figure 3, Respondent Statistic Estimation 17

Figure 4, Respondent Self-evaluated Comfortability with Patients 19

Chapter One: Introduction

Research Question

To what extent do high school students misunderstand pediatric cancer, and how do these misconceptions affect the patient and their loved ones?

Background Information

Pediatric cancer is not the first thing a primary care physician would expect when a child presents with mild symptoms such as fatigue and night sweats, but

“Approximately 1 in 285 children will be diagnosed with cancer before age 20 years” (Ward et al., 2014). And as people age, the likelihood of diagnoses increases drastically. The statistical likelihood makes cancer a tragedy that everyone will be affected by, either directly or indirectly. While breast and lung cancer are the most common in adults, acute lymphocytic leukemia is the most common in pediatric patients, followed by brain and CNS cancers (Ward et al., 2014). Because of rapid advancement in cancer treatment, the five-year survival rate for pediatric cancer patients has risen from approximately 28% to 85% since the 1960s (Patenaude & Kupst, 2005). While this development is excellent for all pediatric patients, it can be a source of confusion because public consensus and media can lag in their understanding.

According to Clarke and Everest (2006), cancer portrayal in mass print media has led to stigmatization of its patients which harms the social status and emotional well- being of the patient; mass print media also focuses on scarier statistics that lead to the perception that cancer is “(almost) inevitable” and “metaphors of war and battle are used frequently.” This harmful and fearful media portrayal can lead to cancer being seen as a death sentence, but most pediatric patients are given a reasonable fighting chance to be cured.

Purpose of Study

If misconceptions about pediatric cancer are identified, this research could be used to help educate my study population, high school students. These misconceptions could stigmatize cancer patients. With an aging population, the risk of developing cancer in a lifetime increases; most people born after 1960 will be diagnosed with cancer at some point in their life (Ahmad et al., 2015). All people need to be familiar with the topic because it is common to have a loved one diagnosed with cancer. When people are more familiar with the topic, it is easier to open lines of communication with the patient, which can reduce strain on their relationships and overall help the patient’s well-being.

Communication of the patient’s prognosis and suffering can help their loved ones understand what they are experiencing. Patients with a better understanding of their disease also cope better; therefore, identifying gaps in information is essential for proper education.

Definition of Terms

For this thesis, the following terms will be used:

• Prognosis: the likely outcome of a disease typically describing the patient’s likelihood of survival
• Metastasis: the development of new cancerous growths that have moved from the primary site of disease
• Remission: in leukemia, remission is defined as no cancerous blood cells are detectable through lab analysis after induction chemotherapy; in tumorous cancers, remission is defined as no growth or shrinkage of the tumor through chemotherapy and/or radiation therapy

Chapter Two: Review of Literature

The researcher chose literature that attempted to identify misconceptions and how they could affect the patient. Other sources also exemplified how these misconceptions are perpetuated through media or culture. “People rely on mass media for knowledge about disease, its treatment, meaning and prognosis” (Clarke & Everest, 2006). It is critical to understand how people obtain their knowledge about cancer to change future perceptions. Statistics on the topic are also necessary to argue for further research.

Psychological Consequences of Pediatric Cancer

Dobrozsi et al. (2019) and Graetz et al. (2022) focused on the medical team’s communication with pediatric cancer patients. Quality communication from the medical team is crucial for the patient’s adjustment to diagnosis. A diagnosis significantly changes the life of a patient when balancing previous obligations with new disabilities along with the emotional stress of a life-threatening illness. Guidance is necessary when “navigating work or school disruption and corresponding financial hardships” (Dobrozsi et al., 2019). Communication can alleviate these stresses and ultimately lead to a better quality of life. Graetz et al. (2022) proposed a methodic framework for medical provider communication to help aid in patient understanding. “Misdiagnosis, gaps in care access, and treatment refusal are partially attributable to cancer misconceptions; a lack of knowledge or awareness regarding cancer care; and cultural barriers, including distrust” (Graetz et al., 2022). Medical providers must dispel misinformation through exemplary communication so that their patients can make more educated choices about their treatment and life.

Block (2008) stated what specifically distresses cancer patients and how treatment affects patients’ roles within their families and community. The most apparent stressor of a patient would be losing their life, “but what struck us most about the study was the emphasis patients placed on their strong desire to resume working and supporting their families” (Block, 2008). When evaluating the patient’s quality of life, it is important to note their previous obligations to their families and communities. To provide the best care, it is necessary to address these needs through education and support group activities. The studies that Block (2008) reviewed “state that the extent of damage to social functions is even worse than the damage to the body or the mind.” Other sources support that misconceptions can stigmatize patients affecting their social roles.

Patenaude and Kupst (2005) studied how treatment can affect relationships in the future. “Long-term effects of treatment vary and can include neurocognitive deficits, organ damage, decreased growth, and infertility.” These life-lasting physical and cognitive effects of treatment can cause strain on social relationships and emotional state.

Eiser et al. (2000) analyzed the emotional well-being of pediatric cancer survivors. An important conclusion of the systematic literature review was that “simple comparisons of survivors against population norms on standardized measures of anxiety, depression, and self-esteem point to few differences” (Eiser et al., 2000). When characterizing pediatric cancer patients, it is crucial to understand the real psychological impact of the disease so as to not falsely stereotype them. Eiser et al. (2000) found less conclusive evidence that pediatric cancer affects mental health than Patenaude and Kupst (2005). Eiser et al. (2000) dove deep into the different methodologies used to study pediatric cancer’s long-term psychological effects. Extraneous influences and lack of data are factors to note when evaluating the methodology of research (Eiser et al., 2000).

Misinformation about Pediatric Cancer

Guidry et al. (2021) conducted a survey pertaining to COVID-19 misinformation on caregivers of pediatric cancer patients. The survey found that “parents of children with cancer are more vulnerable to misinformation.” Guidry et al. (2021) provided a possible explanation that caregivers of cancer patients are more concerned with COVID-19 and therefore spend more time on the internet reading information. Elevated stress levels significantly increase caregivers’ susceptibility to misinformation.

Chen et al. (2018), Warner et al. (2021), and Fillon (2022) exemplified how social media can disseminate misinformation. According to Warner et al. (2021), “Cancer misinformation on social media may influence caregiving behaviors and decision making.” How a pediatric patient’s guardian interprets their disease is critical in decision making. This further supports that proper education and communication with the patient and their support system are crucial for optimal care. Chen et al. (2018) and Fillon (2022) agreed that harmful misinformation spreads more frequently than evidence-based information. Social media is a leading contributor to the spread of misinformation.

Mass Media Portrayal of Cancer

Clarke and Everest (2006) and Dorio et al. (2018) analyzed cancer stories in magazines and articles. They found common themes and contrasts between these stories to create a more comprehensive understanding of the media portrayal of cancer. Fear and cancer were strongly correlated in magazine stories which could lead to the stigmatization of patients (Clarke & Everest, 2006). Dorio et al. (2018) found that a

common theme in the reviewed articles is “the idea of cancer treatment being tantamount to torture.” Reoccurring themes of fear and suffering can create a taboo surrounding cancer which can cause social strain for the patient.

Kromm et al. (2007) analyzed news stories about fundraising that contain stories from cancer survivors. They found a contrasting conclusion that “cancer is portrayed as a positive life event.” While enduring the disease of cancer causes distress, some survivors used their experience to help others with fundraising and fighting stigmatization. They accomplished this by providing encouraging information surrounding cancer, an intimidating, taboo subject.

Cancer Statistics

Ahmad et al. (2015), Miller et al. (2020), and Ward et al. (2014) provided thorough statistics describing the likelihood of developing cancer as well as differentiating the likeliness of different pediatric cancers. The likelihood of developing cancer within a person’s lifetime has increased significantly as the population ages (Ahmad et al., 2015). As cancer becomes more common in society, it is crucial to spread evidence-based information to the public. Miller et al. (2020) and Ward et al. (2014) came to similar conclusions regarding diagnosis and survival rate: adolescent five-year survival rate is approximately 85% which has dramatically increased over the past decades. Ward et al. (2014) found that “1 in 285 children are being diagnosed with cancer before age 20 years.” Statistics are necessary to justify the thesis’s purpose and that cancer is something everyone should know of.

Conclusion

Most research came to similar conclusions regarding the harms and spread of misinformation, but further research is necessary when characterizing the long-term emotional effects of pediatric cancer. Further research is also required in describing how media portrays and perpetuates the taboo surrounding cancer and the stigmatization of patients. Literature also agreed that this stigmatization leads to more social stress on patients. Studies regarding misinformation about pediatric cancer often addressed the effects on caregivers and their decision making. But none of the existing literature addresses the school setting and how cancer stigmatization affects the relationships between students, faculty, and patients. This thesis will attempt to address this gap and characterize the effect of misinformation on patients in a high school setting.

Chapter Three: Methodology

Research Approach

The researcher created a quantitative survey to identify misconceptions about cancer. Quantitative data creates objective correlations and removes bias. Quantitative data can also be used to create easy-to-comprehend tables or figures to quickly understand the results of the research.

There is no standard scale or survey for the thesis question, so the researcher used common misconceptions identified by The National Cancer Institute (2018) and pediatric prognosis identified by Patenaude & Kupst, (2005). A gap in their information is the frequency of these misconceptions in adolescents which the thesis attempts to accomplish.

Survey Description

The survey was created on Google Forms because Google Forms automatically organizes data into easy-to-comprehend tables. The survey was comprised of primarily yes or no questions and two open-ended questions with correct answers. The open-ended questions were still considered quantitative data because they had one correct answer.

The questions each focused on a different misconception and evaluated the knowledge of the respondent. The participants were anonymous so the survey would remain ethical. All participants were current high school students in the U.S. to directly address the thesis question, “to what extent do high school students misunderstand pediatric cancer, and how do these misconceptions affect the patient and their loved ones?”

Source Selection

The researcher chose sources from the 21st century that fell into one of four categories: psychological consequences of diagnosis, consequences of misinformation, media portrayal, and statistics. These categories were chosen to address where misinformation originates and how diagnosis and misinformation affect the patient and caregivers. The thesis attempts to draw comparisons between existing literature and how misinformation could affect the high school setting. Statistics were used to justify the prevalence of pediatric cancer. The researcher primarily used PubMed to search for articles under these categories and PubMed ensures that the articles are credible.

Data Analysis

The researcher first categorized respondents into three groups based on two demographic questions: a participant that has never been close to someone with a diagnosis, a participant that has known a patient but not lived with them during treatment, and a participant that has lived with a patient receiving treatment for cancer. These demographics were created to acknowledge the differences in participants’ firsthand experiences with cancer and how that affects their knowledge of the topic. The researcher compared these groups’ responses to various misconceptions regarding cancer. Since the participants were asked to not research the correct answer to these misconceptions during the survey, their existing knowledge could be assessed. Some participants gave non- number answers that cannot be used in the analysis and those answers were omitted. The researcher used the organization tools on Google Spreadsheets to create figures and comparisons of the survey results. The researcher’s experience with faculty and peers, existing research, along with survey results will be used to synthesize an idea of how misinformation affects pediatric patients.

Chapter Four: Results & Discussion

This section will introduce the researcher’s findings and argue for their validity and purpose. The primary goal of the survey is to answer the first clause of the research question, “To what extent do high school students misunderstand pediatric cancer?” The survey was conducted in a time when nearly every American student has open access to the internet at school and home. Students and faculty can educate themselves about cancer now, but before the internet, education came from a doctor, teacher, or book, which is less accessible. Internet and social media have the possibilities of reducing the lack of cancer information, but also open the door to the spread of misinformation. “Health, and especially cancer-related, misinformation has been widely spread on social media, which can affect individuals’ attitudinal and behavioral responses to cancer” (Chen et al., 2018). Since the survey sample size, 35 respondents, was small, concrete conclusions cannot be made. With a larger sample size, the validity of this thesis could have been strengthened. Correct information pertaining to the survey’s misinformation identification questions is given by The National Cancer Institute (2018).

Grouping

Figure 1, Respondent Demographics

Group one is defined as answering “no” to survey question one (see appendix) There are ten respondents in group one. Group one has likely received the least first-hand experience with cancer. These respondents are more influenced by secondary sources of cancer information such as social media or mass media. Since mass print media emphasizes the fear surrounding cancer (Clarke & Everest, 2006), group one could be more susceptible to social strain with pediatric patients.

Group two is defined as answering “yes” to survey question one but “no” to survey question two (see appendix). There are nineteen respondents in group two. Group two is likely more familiar with cancer than group one but less familiar than group three because they have not lived with a cancer patient. They are still exposed to cancer information from the patient or loved ones.

Group three is defined as answering “yes” to both survey questions one and two There are six respondents in group three. These respondents are the most familiar with cancer and the effects that treatment has on patients. Group three has also been exposed to more first-hand information about cancer than other groups whether that is from the patient, loved ones, or physician.

Survey Findings

Out of 35 high school respondents, 71.4% claimed that someone close to them has received a cancer diagnosis. This proves that even at an early age, a majority are affected by cancer. Cancer will continue to become more prevalent as the world’s average life expectancy increases since age is the most significant risk factor in cancer development. A majority of people born after 1960 in Great Britain will receive a cancer diagnosis before they pass (Ahmad et al., 2015). Since the populations of Great Britain and the U.S. have similar lifestyles, similar alcohol and tobacco consumption and similar obesity rates, this conclusion can be similarly applied to U.S. citizens too.

Figure 2, Misconception Belief Percentage

For the first misconception identification question, survey question three (see appendix), all three groups responded similarly with around 50% believing that metastasis can be caused by surgery. The risk for surgery to induce metastasis is extremely low (The National Cancer Institute, 2018). Since the question is true or false this suggests guessing and a lack of knowledge about the topic. Neither first-hand nor media information addresses this topic, and the risk of metastasis is niche to medical professionals. While this misconception may have little to no effect on a person’s perception of cancer, misinformation about this topic could lead to treatment non- adherence which inevitably ends in worse prognostic outcomes. It is up to the medical professional to educate their patients to guide them to make the best decisions for themselves or their loved ones. Especially when caregivers of pediatric cancer patients are more susceptible to misinformation (Guidry et al., 2021).

All groups responded similarly to survey question four (see appendix) with only 11.4% of all respondents believing it is true. The belief that poor mental health could cause a life-threatening disease would further fuel anxieties, so a large majority of high school students not having this misconception is a positive finding of the survey.

On survey question five (see appendix), groups one and three were unsure while group two was more certain that the patient’s demeanor played a role in prognosis.

Treatment adherence and infection avoidance are the only things in patients’ and caregivers’ control when it pertains to positively affecting prognosis. Believing in this misconception could lead to a positive feedback loop of anxiety within the patient because of the belief that anxiety could negatively affect their outcome.

Figure 3, Respondent Statistic Estimation

All groups responded similarly, with group three being the most skewed, on survey question six (see appendix). The misconception that cancer is commonly inherited most likely won’t harm a cancer patient or their loved ones, but this misconception could further the anxiety of an adolescent with a family history of cancer. While family history is a risk factor for the development of cancer, this does not warrant stress in your average adolescent. Most pediatric cancers do not have a preventable cause.

All groups estimated the five-year survival rate significantly below the actual value of 85% (Miller et al., 2020). Group one was the most optimistic while group three was the most pessimistic about prognosis. This is because group one is more influenced by the portrayal of survival in media while group three is more influenced by the hardships and death that cancer can bring. Since cancer is more common in older people and being older is worse for prognostics, group three was more likely to be exposed to geriatric cancer rather than pediatric. The death that is likely from older cancer patients can alter a loved one’s perception of cancer overall.

Another important concept to understand about what affect’s the patient’s prognosis is remission. While remission may look different for each patient depending on the type of cancer, remission is always a good indicator that the patient is heading in the right direction with their treatment. Remission does not indicate that the patient is cured or will likely survive but suggests that the cancer is responding to the initial treatment.

Metastasis and reoccurrence are possible and sometimes likely depending on the patient’s case. The patient in many cases is considered “cured” of cancer if they have retained remission for five years.

This is the most detrimental misconception identified in this thesis because underestimating the survival rate of pediatric cancer patients in the high school setting can lead to more discomfort between the patient and their peers. This is because it can be difficult for a third party to want to maintain and create close relationships with a person the third party believes there is a reasonable chance that the patient could lose their life. Often, high school students have never encountered a situation where a peer has a life- threatening condition and lack the experience and maturity to properly address the situation. It is difficult not only for the patient, but their friends to cope with the risk of death. Education about the likelihood of survival could help both parties cope with the illness.

Figure 4, Respondent Self-evaluated Comfortability with Patients

Group one was less comfortable with the idea of talking to a pediatric cancer patient about cancer than groups two and three. This suggests that first-hand experience with cancer patients gives peers a stronger capability for empathy, and peers are less prone to discomfort about the topic because of familiarity.

Chapter Five: Conclusion

This thesis synthesized prior research and conducted an anonymous survey to explain the effects of misinformation surrounding pediatric cancer in the high school setting. The survey provided quantitative correlations amongst respondents, which aided in describing the consequences of the identified misconceptions. Prior research provided insight into the prevalence of cancer and the source of misinformation.

Major limitations of the survey include the small sample size and the simple question design. Because of the true and false nature of the misconception identification questions, strong correlations cannot be drawn because of participants’ guessing. A better approach would involve an unknown answer choice or a zero to five scale of certainty of a given statement. This thesis is also limited by the location of respondents, most presumably from Central Magnet High School. Various locations can have vastly various levels of prior knowledge regarding any subject.

The most vital implication of this thesis is the underestimation of pediatric cancer patients’ survival. The fear induced by the possibility of death can cause social strain and isolation for the patient. Understanding this possibility is tantamount to providing the best possible care for patients. Workable solutions could be combatting misinformation on social media and providing more education and familiarity. Other misconceptions were identified but are unlikely to have a significant effect between the patient and their peers in the high school setting. The other misconceptions are more crucial for patients and their caregivers. Misinformation can reduce treatment adherence and cause more distrust and uncertainty between the patient and their medical team. A strong, trusting relationship between the patient, caregiver, and medical team is necessary for providing the best possible palliative care during a frightening and vulnerable time.

Prior research provides inconclusive information on the psychological sequelae caused by pediatric cancer. Further research should examine the prevalence of social and psychological consequences of diagnosis and treatment. Another aspect to analyze is the effect of education and familiarity on non-patients and how this affects social strain between patients and peers.

Appendix

Survey Questions

Question 1: Has someone close to you received a cancer diagnosis?

Question 2: Have you lived in the same house as someone receiving treatment for cancer?

Question 3: Do tumor biopsy and tumor removal surgeries increase the risk for metastasis (spreading of cancer)?

Question 4: Does attitude towards life affect a person’s likelihood of developing cancer?

Question 5: Does attitude towards life affect a patient’s likelihood of surviving cancer?

Question 6: What percent of pediatric cancer patients survive 5 or more years after their diagnosis?

Question 7: What percent of pediatric cancer patients developed cancer due to an inherited gene?

Question 8: Would you be comfortable speaking to a pediatric cancer patient about their condition?