Abstract
Purpose:
This study aimed to assess the sources of COVID-19 information used, behavioral changes in response to the pandemic, and factors associated with adherence to social distancing guidelines among adolescents and young adults (AYAs) with cancer during the COVID-19 pandemic.
Methods:
We conducted a self-administered online survey of AYAs with cancer (aged 18–39 years) diagnosed between ages 15 and 39 and living in Canada during January and February 2021. Data were summarized using descriptive statistics. Multiple logistic regression was used to identify the factors associated with adherence to the social distancing guidelines.
Results:
In total, 805 AYAs were included. Participants were most likely to obtain COVID-19-related information from social media (60.5%), news reports (51.6%), and medical professionals (46.5%). The preferred modes of receiving information were websites of cancer organizations (47.9%), social media (44.8%), and medical professionals (40.2%). The common behavioral changes in response to the COVID-19 pandemic included wearing a protective mask (60.2%), avoiding crowded and public places (56.9%), and abiding by social distancing rules (49.4%). On multivariable analysis, participants were more likely to adhere to social distancing rules if they were women, unemployed or collecting disability/unemployment benefits, or had a personal income of <$40,000 in year 2020 (p < 0.05).
Conclusion:
Social media and websites of cancer organizations are the preferred modes of COVID-19 information. Since many AYAs are nonadherent to preventative health measures, cancer organizations should help develop and disseminate digital resources that provide tailored information to AYAs with cancer during this pandemic.
Introduction
Individuals living with cancer and cancer survivors are at a greater risk of a severe infection or mortality from COVID-19.1,2 Overwhelmed medical systems, lack of personal protective equipment, staff shortages, and restricted access to medications have resulted in disrupted care of many patients with cancer during this pandemic. 3 Individuals living with cancer require easily accessible, up-to-date, and evidence-informed information about COVID-19 and cancer. Rapidly evolving guidelines and public health orders combined with increasing misinformation have made obtaining current and accurate information related to the COVID-19 pandemic difficult. 4 Individuals living with cancer must also determine whether the available information is relevant to their individual needs and circumstances. Cancer organizations, public health agencies, and patient advocacy organizations have shared the task of developing and disseminating information related to COVID-19 and cancer during this pandemic.5–7
Adolescents and young adults (AYAs) with cancer are a cohort of cancer patients between the ages of 15 and 39 with distinct developmental and psychosocial needs who already experience a high level of unmet cancer information needs.8–10 AYAs are also more likely than older persons with cancer to obtain information from social media platforms and internet resources. 11 The communication preferences of this cohort of patients require particular attention to ensure that they have access to the information needed to remain safe during the COVID-19 pandemic. Issues in communicating the correct information about COVID-19 to AYAs with cancer may affect adherence to public health measures, such as social distancing. Previous studies have suggested that the perceived risk of COVID-19 infection influences adherence to the social distancing measures during this pandemic. 12 The perception of lower morbidity and mortality among AYAs, in general, has been associated with lower compliance with preventative measures of COVID-19. 12
AYAs with cancer may perceive the risk of COVID-19 infection to be high and hence may adhere to social distancing measures more than their peers not impacted by cancer. It is crucial to assess adherence to social distancing in this group given the demonstrated benefits of social distancing in preventing the spread of COVID-19 and the increased risk of a severe COVID-19 infection for this population.
Therefore, among AYAs with cancer living in Canada, we sought to identify the sources of COVID-19-related information and perceived adequacy of information received; describe the adoption of various precautionary behaviors and adherence to social distancing measures; and identify factors associated with compliance with social distancing.
Methods
Data were collected through a cross-sectional survey that aimed to determine the impact of the COVID-19 pandemic on cancer care and the health of AYAs with cancer living in Canada (ICOVIDAYA). Individuals diagnosed with any type of cancer between the ages of 15 and 39, irrespective of their treatment status, who were currently 18 to 39 years old, and living in Canada were eligible to participate. A 49-item survey questionnaire was developed by engaging coinvestigators and patient partners with lived experiences of cancer. The survey questions relevant to this analysis are listed in Supplementary Appendix SA1. Individuals were recruited through social media sites of various national AYA support groups such as Young Adult Cancer Canada (YACC) 13 and oncology clinics at CancerCare Manitoba. A link to the self-administered, anonymous online survey in English and French was provided to participants through REDCap. 14 The survey was open for enrollment in January and February 2021. All participants provided electronic informed consent. The Research Ethics Board approved this study at the University of Manitoba (HS: 24501).
Survey measures
We collected demographic information, including age (18–25 vs. >25 years), gender (man vs. woman), ethnicity (nonwhite vs. white), current province or territory (British Columbia vs. Prairies vs. Central Canada vs. Atlantic Canada vs. Territories), living environment (urban vs. rural/remote), relationship status (single vs. in a relationship), employment status (employed vs. unemployed vs. student vs. caregiver/homemaker vs. collecting disability or unemployment benefits), and personal income in the year 2020 (<$40,000 vs. $40,000–$60,000 vs. >$60,000 Canadian), along with information related to their cancer diagnosis, including cancer type (hematologic vs. nonhematologic malignancy), currently receiving cancer therapy (yes vs. no), and cancer treatment status (undergoing cancer treatment vs. completed treatment within last 1, 1–5, or more than 5 years). In addition, data about the presence of self-reported prepandemic mental health conditions were evaluated by asking participants if they had a preexisting mental health condition before the pandemic and allowing them to select “yes,” “no”, or “I prefer not to answer.” Information about chronic health conditions was assessed by requesting patients to choose from a list of chronic health conditions: lung disease, heart disease, hypertension, diabetes, kidney disease, liver disease, stroke, and others. Alternatively, participants could select “I do not have any chronic health conditions” if they were otherwise healthy.
To assess sources of COVID-19-related information, participants were asked, “Where have you been getting information about the COVID-19 pandemic?” Participants could select as many answers as they wanted from the choices of medical professionals, news reports, social media, patient organizations/support groups, relatives and friends, and others. Participants rated the adequacy of COVID-19-related information specific to patients with cancer provided to them using a self-created scale of very adequate, somewhat adequate, neutral, somewhat inadequate, or not adequate at all. The participants also reported the preferred sources of information specific to COVID-19 and cancer, which included medical professionals, the online website of the cancer organization, pamphlets developed by cancer organizations, social media, patient organizations/support groups, and others. To assess COVID-19-specific behavioral modifications and preventive measures, participants were asked, “What sort of behavioral modifications or preventative measures have you been regularly taking during the pandemic?” and they could select as many options as were relevant from the options of frequent hand washing; not touching the face; wearing a protective face mask; wearing gloves; avoiding crowds or populated places; abiding by social distancing rules in your jurisdiction; complete isolation from members outside of the household; avoiding public transport; avoiding visits to any stores, including grocery stores; and other.
Statistical analyses
Descriptive statistics were used to summarize demographic and clinical factors, COVID-19 information factors (sources, perceived adequacy, and preferred sources), behavioral modifications, and preventive measure variables. Factors associated with adherence to social distancing measures were investigated using logistic regression. Crude odds ratios and 95% confidence limits were estimated using simple logistic regression for determining the association between adherence to social distancing rules in their jurisdiction (yes vs. no) and predetermined variables, such as age, gender, ethnicity, geographic location, current province or territory, relationship status, personal income in the year 2020, presence of self-reported prepandemic mental health condition, preexisting chronic physical health condition, cancer type, current status of cancer treatment, employment status, and perceived adequacy of cancer-specific information on COVID-19. Factors demonstrating a statistically significant association with adherence on univariable analysis were entered into a multivariable logistic regression to determine their association with adherence to social distancing after adjusting for the influence of other confounding variables. All tests were two-sided, and p-value <0.05 was considered statistically significant. The analyses were conducted with SPSS, version 28.0. 15
Results
Characteristics of the study population
Of 1063 participants completing the survey, 258 participants were excluded either because of not reporting their age or their age was >39 years. Therefore, 805 participants were included in the analysis. The missing data varied from 0.2% to 2%. Table 1 describes the cohort characteristics. The mean age of respondents was 30 years. Men represented more than half (N = 445, 55.5%) of the study sample. The majority of participants (N = 650, 80.7%) had a diagnosis of nonhematologic malignancy and one-third (N = 265, 33%) were actively receiving treatment for their cancer. Self-reported chronic physical health conditions such as hypertension; diabetes; and chronic kidney, lung, liver, or heart disease were reported by (N = 192, 23.9%) participants. Likewise, 118 (14.8%) participants reported the presence of prepandemic mental health conditions.
Demographics of the Study Population (n = 805)
N = 802.
Ontario, Quebec.
Alberta, Saskatchewan, Manitoba.
Newfoundland and Labrador, Nova Scotia, New Brunswick, Prince Edward Island.
Yukon, Northwest Territories, Nunavut.
N = 801.
Multiple option choices could be selected.
N = 756.
N = 803.
For example, personality disorder, attention deficit hyperactivity disorder.
For example, autoimmune diseases, seizure disorder.
N = 800.
LOA, leave of absence.
Sources of COVID-19-related information
The sources of COVID-19 information used by participants are summarized in Table 2. Participants most commonly obtained their COVID-19 information from social media (N = 487, 60.5%), followed by news reports (N = 415, 51.6%), and from medical professionals (N = 374, 46.5%). Participants indicated that their preferred method to receive information specific to COVID-19 and cancer would be from the website of their cancer institute (N = 386, 47.9%), social media (N = 361, 44.8%), or from a medical professional (N = 324, 40.2%). When rating the adequacy of information received about COVID-19 specific to patients with cancer, 13.9% (N = 112) and 37.7% (N = 303) participants perceived the information to be very adequate or somewhat adequate. The participants on active cancer treatment reported COVID-19 information received to be more or somewhat adequate than those not on active cancer treatment (54.7% vs. 50.1%, x2 = 808.47, p < 0.001). Individuals on active cancer treatment were also more likely to receive information from medical professionals (46.9% vs. 41.2%, x2 = 4.56, p = 0.033) (Supplementary Table S1).
Sources and Adequacy of COVID-19-Related Information and Behavioral Changes in Response to the Pandemic (N = 805)
Facebook and Instagram, etc.
Broadcasts or online posts.
Oncologists, other physicians, nurses, and pharmacists, etc.
Such as work, provincial operation center, and personal research.
N = 803.
Behavioral changes in response to COVID-19
When participants were asked about the behavioral modifications and preventative measures they enacted during the pandemic, 60.2% (N = 485) reported wearing a protective face mask, 56.9% (N = 458) reported avoiding crowds and public places, and 49.3% (N = 397) reported washing their hands frequently (Table 2). The COVID-19 preventive measures such as complete isolation from members outside of the household or avoiding visits to public stores, including grocery stores, were taken by 322 (40.0%) participants (Table 2). Half of the participants (N = 398, 49.4%) reported adhering to the social distancing rules in their jurisdiction.
Factors associated with adherence to social distancing rules
On univariable analysis, female gender, employment status (unemployment and collection of disability benefits), lower personal income (<$40,000), and self-reported history of a prepandemic physical health condition were associated with greater adherence to social distancing rules (p < 0.05). On multivariable analysis, participants were more likely to adhere to social distancing rules if they were women (adjusted odds ratio [AOR] 1.40, CI 1.03–1.91, p = 0.033), unemployed (AOR 1.67, CI 1.04–2.68, p = 0.033), or collecting unemployment or disability benefits (AOR 6.58, CI 1.90–22.77, p = 0.03) (Table 3). Participants were less likely to adhere to social distancing guidelines if they had an income of $40,000–$60,000 or >$60,000 compared with those with an income <$40,000 (AOR 0.50, CI 0.31–0.81, p = 0.056, and AOR 0.46, CI 0.30–0.72, p < 0.001, respectively) (Table 3).
Factors Associated with Adherence to Social Distancing Rules (n = 760)
Ontario, Quebec.
Alberta, Saskatchewan, Manitoba.
Newfoundland and Labrador, Nova Scotia, New Brunswick, Prince Edward Island.
Yukon, Northwest Territories, Nunavut.
Discussion
This study is the first to explore the COVID-19 information sources and behavioral changes of AYA cancer patients and survivors during this pandemic. Social media and news reports (broadcasts or online posts) were the two most used sources of COVID-19-related information. In addition to abiding by social distancing rules, the most common behavioral changes in response to COVID-19 were wearing a protective mask and avoiding crowded and public places. Women, those unemployed or collecting disability/unemployment benefits, and those with a personal income of <$40,000 in year 2020 were more likely to adhere to social distancing rules.
The use of social media and news reports for accessing COVID-19-related information is understandable as they are widely accessible, convenient, and provide timely updates on a rapidly evolving topic. However, information shared on social media is unregulated, and no editorial regulation occurs before publication. In February 2020, the World Health Organization announced that the COVID-19 pandemic was accompanied by an “infodemic” of misinformation. 16 A study of COVID-19-related Twitter posts identified that 24.8% of tweets included misinformation and 17.4% had unverifiable information related to COVID-19. 17 Since a majority of the AYAs are using social media to obtain their COVID-19 information, it is plausible that reliance on the misinformation obtained from social media may confer an increased risk of nonadherence to COVID-19-related public health guidelines. A recent study from the United States demonstrated that parents of children with cancer are more likely to believe in the misinformation and myths related to COVID-19 prevention. 18 This may be because parents of children with cancer are more worried about COVID-19, resulting in more time researching COVID-19 and more exposure to misinformation. The increased stress of having a child with cancer may also impact their information-processing abilities. 19 Since patients with cancer and their families are susceptible to believing the misinformation available online and are primarily using online resources to learn about COVID-19, they must have access to high-quality COVID-19-related information.
One particular concern regarding the impact of social media consumption on the decision-making of AYAs with cancer is COVID-19 vaccine hesitancy. A large proportion of vaccine information on social media sites is related to antivaccination content.19,20 Disinformation is the purposeful and deliberate spread of inaccurate information. Online disinformation campaigns during COVID-19 have been shown to result in negative discussions about vaccines on social media and declining vaccination rates. 21 Vaccine hesitancy is very concerning in this population given their higher risk of developing severe illness with COVID-19. A recent study among patients with breast cancer demonstrated that 34% of the women with breast cancer were hesitant to be vaccinated. 22 The efficacy of the COVID-19 vaccine varies among patients with cancer, necessitating the need for cancer-specific COVID-19 information.23,24 Patients with cancer have a right to receive information targeted to their unique needs to ensure they can make informed medical decisions during this period of increased vulnerability. Recognizing that social media is the preferred source of information for this population, cancer care organizations must optimize communication through this medium to provide credible and relevant COVID-19-related information to these patients.
Only half of the participants rated the adequacy of information received about COVID-19 specific to patients with cancer as very adequate or somewhat adequate. Participants undergoing cancer treatment were more likely to positively rate the cancer-specific COVID-19 information received; this is potentially because individuals undergoing cancer treatment are more likely to receive information from health care providers than those off therapy. Health care providers are more likely to provide high-quality, evidence-based, and cancer-specific COVID-19-related information. To ensure that patients with cancer have access to high-quality and relevant information, individuals with expertise in oncology should be actively involved in developing and distributing resources regarding cancer and COVID-19. Nearly half of the participants were interested in obtaining information from a health care professional, while 47.9% were interested in getting information online from the website of their cancer institution. This finding demonstrates that a significant number of AYAs are interested in receiving information designed by health care professionals specifically for patients with cancer, taking into account their diagnosis, cancer treatment, and morbidities. The increased interest in online information further demonstrates that most AYA patients want to receive their information through digital sources. As 40% of AYAs indicated an interest in receiving COVID-19-related information through pamphlets, health care providers must also use this information mode alongside online media to enhance accessibility to COVID-19-related information, particularly to the AYAs not having access to digital technology.
The Public Health Agency of Canada has consistently advocated for protective face masks, avoiding crowded spaces, abiding by social distancing rules, and washing hands frequently; however, only 49.3%–60.2% of participants in the present study regularly used these preventative measures. 25 In a survey of Canadians without cancer, 60% reported strict adherence to preventive health measures during COVID-19. 26 However, caution must be taken to directly compare the results of this study with ours as this study was conducted during the early phase of the pandemic when preventive health measures may have been defined differently. What can be concluded is that despite a higher risk of developing a severe COVID-19 infection, AYAs with cancer are not fully compliant with public health guidelines.
Male gender has previously been identified as a risk factor for noncompliance with COVID-19 safety guidelines in studies of individuals without cancer; it is consistent with our findings where women were 1.4 times more likely to abide by social distancing rules than men. 25 The impact of income on adherence to social distancing guidelines has varied in studies of individuals without cancer.27,28 In our study, a lower income was associated with increased adherence to social distancing guidelines. Individuals with a lower income have been more vulnerable to COVID-19 infection and are more likely to experience COVID-19 infection-related morbidity or mortality in their families and friends. 29 This increased risk and disease awareness might have translated into more vigilant social distancing practices in this subgroup. 29 Alternatively, individuals with a higher income may consider themselves invincible to COVID-19 due to their ability to work remotely and avoid public transit, which may have resulted in their feeling “risk-free” or that public health rules do not apply to them. We also found that AYAs who were either unemployed or were collecting disability benefits were more likely to adhere to the social distancing rules. An increased perceived risk of a severe COVID-19 infection among AYAs with cancer-related disabilities may explain the increased adherence of individuals collecting disability benefits to social distancing rules. Interestingly, while nearly one-third of participants were on active therapy, these individuals were not more likely to comply with social distancing guidelines than individuals who had completed treatment. This finding is very concerning given that individuals on active therapy are more likely to be immunosuppressed from cancer therapies and having a greater risk of experiencing an adverse outcome from COVID-19.
Our study has several important limitations to acknowledge. The participants of our study may not be representative of all AYAs with cancer in Canada. For instance, 95.6% of respondents identified as white, while only 72.6% of the Canadian population identifies as white. 30 Due to the online nature of the survey, the study could not capture the information sources used by and behaviors of AYAs with limited access to technology. The voluntary nature of the survey could have attracted the participants concerned about COVID-19. Therefore, the responses may not reflect those of the total AYA cancer population in Canada. In addition, we did not ask participants to characterize the author or source of the social media post. Given that information provided on individual Twitter accounts versus Twitter accounts from hospitals and cancer organizations may have very different qualities, this would be important to address in future studies. In addition, our study did not assess the vaccination status of participants as the COVID-19 vaccine was not widely available in Canada at the time of our study. Finally, we did not examine other potential factors influencing adherence to public health restrictions, such as educational qualifications, provincial lockdown status and COVID-19 infection rates, trust in government policies, or personal reasons for engaging or not engaging in preventative health measures.
In conclusion, we demonstrated that social media is the most commonly used source of COVID-19 information for AYA cancer patients and survivors. AYAs with cancer prefer to get COVID-19 information from their cancer organizations, social media, and medical professionals. As participation in preventative health measures has been suboptimal, future studies should examine the strategies to promote adherence. Cancer organizations must prioritize the development and dissemination of credible COVID-19-related information specific to the needs of this population using the preferable media. These findings have important potential implications as we move toward raising awareness about the benefits and efficacy of COVID-19 vaccination and addressing vaccine hesitancy among these vulnerable patients during this pandemic.
Footnotes
Acknowledgments
The authors thank the study participants and patient partners for their contributions to this study.
Authors' Contributions
All authors were involved in conception and design. A.Y., K.H., C.G., and S.O. were involved in collection and assembly of data. A.Y., K.H., C.G., and S.O. were involved in data analysis and interpretation. A.Y. and S.O. were involved in manuscript writing. All authors gave final approval of the manuscript. All authors are accountable for all aspects of the work.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This work was funded by the CancerCare Manitoba Foundation.
References
Supplementary Material
Please find the following supplemental material available below.
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