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.
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 (21.3%) 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.
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. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-021-06628-5.
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