Psychological distress and experiences of Adolescents and Young Adults with cancer during the COVID-19 pandemic: A cross-sectional survey.

BACKGROUND: This study investigated prevalence of psychological distress, factors associated with distress, and experiences of Adolescents and Young Adults (AYAs) with cancer during the COVID-19 pandemic. It also compared distress in this group to previously surveyed Canadian AYAs with cancer in 2018 by the Young Adults with Cancer in their Prime (YACPRIME) study. METHODS: A cross-sectional, online, self-administered survey of AYAs diagnosed with cancer between 15 and 39 years of age was conducted. Psychological distress was measured by the Kessler Psychological Distress Scale (K10). Associations between variables and high psychological distress (K10 ≥ 25), and comparison of prevalence of psychological distress with the YACPRIME study were done using multivariable logistic regression. Summative qualitative content analysis analyzed participant experiences during this pandemic. RESULTS: We included 805 participants. High psychological distress was present in over two-thirds of the group (68.0%; 95% CI, 64.7%-71.2%). Employment impact during pandemic (AOR (adjusted odds ratio), 2.16; 95% CI, 1.41-3.31) and hematologic malignancy (AOR, 1.76; 95% CI 1.08-2.97) were associated with higher psychological distress, while older age [AOR, 0.95; 95% CI, 0.92-0.99] and personal income < $40,000 (AOR, 0.38; 95% CI, 0.24-0.58) were associated with lower distress. Adjusted odds of experiencing psychological distress among AYAs with cancer during pandemic compared to pre-pandemic years was 1.85 (95% CI: 1.36-2.53). Overarching themes of pandemic experiences included: inferior quality of life, impairment of cancer care, COVID-19 related concerns and extreme social isolation. CONCLUSION: AYAs diagnosed with cancer are experiencing high psychological distress during this pandemic. Distress screening and evidence-based interventions to alleviate distress are essential.

Loneliness among adolescents and young adults with cancer during the COVID-19 pandemic: a cross-sectional survey.

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer are at an increased risk of experiencing social isolation and loneliness secondary to their cancer and its treatment. The physical distancing measures implemented during the COVID-19 pandemic may have further increased loneliness among this group. This study examined the prevalence of loneliness and factors associated with loneliness among AYAs with cancer during this pandemic. METHODS: We conducted a self-administered, online, cross-sectional survey of Canadian AYAs diagnosed with cancer between 15 and 39 between January and February 2021. Loneliness was measured using the 3-item UCLA Loneliness Scale. Factors associated with higher levels of loneliness were identified using multiple logistic regression. RESULTS: The analysis included 805 AYAs. The prevalence of loneliness was 52.2% [N = 419, 95% CI (confidence interval) 48.7 to 55.6%]. Individuals who were 18-25 years old [AOR (adjusted odds ratio)1.60, CI 1.03-2.47, p = 0.035], currently undergoing cancer therapy (AOR 1.46, 95% CI 1.03-2.07, p = 0.035), who self-disclosed the presence of a pre-pandemic mental health condition (AOR 2.09, 95% CI = 1.22-3.58, p = 0.007), or were not in a relationship (AOR 2.22, 95% CI 1.57-3.14, p < 0.001) were more likely to report loneliness than others. Participants that lived in rural or remote locations were less likely to experience loneliness (AOR 0.59, 95%CI 0.40-0.87, p = 0.008). CONCLUSION: One in two AYAs with cancer are feeling lonely during the COVID-19 pandemic. Future studies for developing interventions to target loneliness, particularly for those at greater risk, are necessary to improve the health and quality of life of AYAs with cancer.

Experiences of adolescent and young adult cancer survivors during the COVID-19 pandemic.

PURPOSE: This study aimed to evaluate the impact of the COVID-19 pandemic on adolescent and young adult (AYA) cancer survivors. METHODS: We conducted a cross-sectional survey of AYAs aged 18-49 with cancer in Canada between January and February 2021. Data from survivors, defined as AYAs more than one year off cancer treatment, were analysed. Multiple logistic regression was used to identify factors associated with psychological distress, loneliness and insomnia. RESULTS: The analysis included 384 survivors. Moderate-to-severe psychological distress was reported by 257 (68.9%) survivors and was associated with an income ≥ $60,000 (adjusted odds ratio [AOR] 2.15, 95% CI 1.11-4.17) and the presence of a pre-existing chronic physical health condition (AOR 2.05, 95% CI 1.18-3.56). Loneliness was reported by 204 (54.0%) survivors and was associated with being unemployed (AOR 2.26 95%CI 1.18-4.31), pandemic causing finances to be worse (AOR 1.82, 95%CI 1.08-3.06) and the presence of a pre-pandemic mental health condition (AOR 1.88, 95% CI 1.03-3.42). Clinical insomnia was reported by 74 (19.5%) survivors and was associated with employment status as a student (AOR 3.00, 95% CI 1.08-8.29) or unemployed (AOR 3.97, 95% CI 1.46-10.83), earning $60,000 or more in the year 2020 (AOR 4.36, 95% CI 1.43-13.32), having haematologic cancer (AOR 2.21, 95% CI 1.05-4.70) and being single (AOR 2.52, 95% CI 1.08-5.91). Pandemic negatively affected employment, finances, physical activity, cancer care and substance use for 73.9%, 66.5%, 32.5%, 21.8% and 19.2% of survivors, respectively. Worries about finances, contracting COVID-19, cancer treatment increasing the risk of COVID-19 infection, and having poor health outcomes from contracting COVID-19 were reported by 46.0%, 45.6%, 55.0% and 47.3% of survivors, respectively. CONCLUSIONS: The COVID-19 pandemic has had a significant impact on AYA cancer survivors, and these individuals report high levels of psychological distress, insomnia and loneliness. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors are at risk for worsening mental and physical health outcomes during the COVID-19 pandemic. Targeted interventions and support programs are urgently needed to support the mental health of AYA cancer survivors and optimize their health outcomes.

Gender differences in adherence to COVID-19 preventative measures and preferred sources of COVID-19 information among adolescents and young adults with cancer.

BACKGROUND: The COVID-19 pandemic has greatly altered the behavior of adolescents and young adults (AYAs) with cancer. No data exists on how gender influences the adherence of individuals with cancer to COVID-19 related public health guidelines and their preferred methods of receiving COVID-19 related information. METHODS: We conducted a cross-sectional survey of adolescents and young adults with cancer. Data were summarized using descriptive statistics. Multiple logistic regression was used to assess differences in adherence to COVID-19 preventative behaviors, and differences in preferred information sources of COVID-19 related information between men and women. RESULTS: Among 633 participants, adherence to key COVID-19 preventative measures was 44.9-58.8% for males and 53.4-68.1% for females. After adjusting for key confounding variables in multivariable analysis, males were less likely to adhere to frequent hand washing (AOR [adjusted odds ratio] 1.45, 95% CI [confidence interval] 1.03-2.03), not touching face (AOR 1.82, 95% CI 1.29-2.56) and social distancing (AOR 1.93, 95% CI 1.37-2.71) than females. Both genders preferred to receive information from their cancer institutes and social media. DISCUSSION: Gender-specific interventions are needed to improve the adherence of males to COVID-19 precautionary measures. Information should be disseminated via cancer institutes and social media as these are the preferred sources of COVID-19 related information among AYAs with cancer.

Prevalence and factors associated with insomnia symptoms in adolescents and young adults with cancer during the COVID-19 pandemic.

OBJECTIVE: The COVID-19 pandemic has been particularly distressing for adolescents and young adults (AYAs) diagnosed with cancer. High levels of distress are associated with sleep disturbances. This study examined the prevalence of insomnia symptoms in AYAs during the COVID-19 pandemic and identified factors related to greater insomnia severity. DESIGN, SETTING, AND PARTICIPANTS: An online survey was administered to Canadian AYAs (N = 805) diagnosed with cancer between 15 and 39 years from January to February 2021. MEASUREMENTS: The primary measure was the Insomnia Severity Index (ISI). Univariable and multivariable binomial logistic regression examined demographic, clinical, and psychological factors associated with significant insomnia symptoms (ISI score ≥12). RESULTS: Three hundred twelve (38.8%) participants reported insomnia symptoms. In the multivariable model, severe psychological distress (ie, depression and anxiety; adjusted odds ratio (AOR) = 28.75, p ≤.001), having a pre-existing mental health condition (AOR = 1.92, p = .03), worsened mental health during the pandemic (AOR = 1.73, p = .02), finished cancer treatment ≥1 year ago (AOR = 1.72, p = .03), and experiencing no changes to schooling during the COVID-19 pandemic (AOR = 2.18, p = .004) were associated with significant insomnia symptoms. Standardized coefficients also indicated that worrying about possible disruptions to cancer care and being a homemaker/caretaker contributed to insomnia symptoms. CONCLUSIONS: Nearly 40% of AYAs with cancer reported insomnia symptoms during the COVID-19 pandemic. Insomnia was associated with potentially modifiable factors such as psychological distress, highlighting possible targets for intervention.

COVID-19-Related Information Sources, Behavioral Changes, and Adherence to Social Distancing Among Adolescents and Young Adults with Cancer.

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.

A Cross-Sectional Survey Exploring the Impact of the COVID-19 Pandemic on the Cancer Care of Adolescents and Young Adults.

We aimed to describe the negative and positive impacts of changes in cancer care delivery due to COVID-19 pandemic for adolescents and young adults (AYAs) in Canada, as well as the correlates of negative impact and their perspectives on optimization of cancer care. We conducted an online, self-administered survey of AYAs with cancer living in Canada between January and February 2021. Multiple logistic regression was used to identify factors associated with a negative impact on cancer care. Of the 805 participants, 173 (21.5%) experienced a negative impact on their cancer care including delays in diagnostic tests (11.9%), cancer treatment (11.4%), and appointments (11.1%). A prior diagnosis of mental or chronic physical health condition, an annual income of <20,000 CAD, ongoing cancer treatment, and province of residence were independently associated with a negative cancer care impact (p-value < 0.05). The majority (n = 767, 95.2%) stated a positive impact of the changes to cancer care delivery, including the implementation of virtual healthcare visits (n = 601, 74.6%). Pandemic-related changes in cancer care delivery have unfavorably and favorably influenced AYAs with cancer. Interventions to support AYAs who are more vulnerable to the adverse effects of the pandemic, and the thoughtful integration of virtual care into cancer care delivery models is essential.