The Perceived Impact of COVID-19 on the Mental Health Status of Adolescent and Young Adult Survivors of Childhood Cancer and the Development of a Knowledge Translation Tool to Support Their Information Needs

Abstract

BackgroundAdolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2).MethodsBetween May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs.ResultsNinety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed.DiscussionAYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future.

Adolescent Cancer Survivors and Their Parents’ Experiences With the Transition Off Treatment to Survivorship: A Qualitative Interview Study

“…The adolescents' perception of being at higher risk from COVID-19 than their healthy peers and thereby more anxious is consistent with other studies on CCSs (Hou et al, 2022;Wimberly et al, 2021). A novel finding was how the family consciously used resources and knowledge they had attained during the cancer treatment (e.g., on infection prevention, isolation routines, and online skills), making them better equipped to be proactive in navigating the demands of the pandemic.…”

“…Treatment completion is often associated with great relief and family celebrations (Keller et al, 2020). At the same time, transitioning off treatment to survivorship can also be a vulnerable phase, with conflicting emotions and uncertainty for the whole family (Hydeman et al, 2019; Nathan et al, 2011). Transitioning off treatment can be seen as a passage from the status of being ill to being healthy, from patient to survivor and returning to everyday life after intense medical care for often extended periods of time.…”

Childhood Cancer Survivors’ Reported Late Effects, Motivations for Seeking Survivorship Care, and Patterns of Attendance

“…Our data were collected prior to the global coronavirus pandemic, however, it would be of interest to evaluate whether survivors’ self-report of some late effects (eg, their perceptions regarding immunity problems) have been impacted by COVID-19. 34 Unsurprisingly, a higher treatment intensity according to the ITR-3 was a common factor associated with a higher reported number of late effects across several diagnoses in our sample. While we did not collect specific treatment data (eg, site and total dose) to understand the relationship between specific treatment(s) received and symptoms or late effects, further evaluation is needed to understand specific treatment-related toxicities, particularly with the evolution of treatments in recent decades.…”

Mental health and health behaviors of parents of survivors of childhood cancer in the early COVID-19 pandemic: Exploring the role of intolerance of uncertainty

“…This study was conducted as part of a larger study on COVID-19 and childhood cancer. [17] We used a social media recruitment strategy targeting survivors of childhood cancer and their parents. Specifically, recruitment posters were distributed through social media platforms such as Twitter and Facebook regarding a study on understanding COVID-19 and childhood cancer.…”