The Impact of COVID-19 on Adolescent and Young Adult Cancer Services

Abstract

Background: The COVID-19 pandemic led to systemic change within healthcare settings. Policies were enacted in order to protect vulnerable cancer patients, meaning the landscape of service provision was significantly altered. Objective: To evaluate the experiences of young cancer patients and their caregivers during the first wave of the pandemic, to inform future service provision. Method: Semistructured interviews were conducted via video software with a cohort of teenage and young adult (AYA) patients (n = 8), as well as caregivers (n = 4). Interviews were analyzed using Framework Analysis. Results: AYA patients and caregivers highlighted areas of care which remained unchanged throughout the pandemic (treatment, communication, safety, and kindness) and areas impacted by the pandemic (visitation, inconsistent rules, lack of resources, and staff conduct). Conclusions: The pandemic was challenging for patients and caregivers. Issues such as extended periods of isolation and inconsistent rules have heavily impacted the wellbeing of AYA patients and their caregivers, and may possibly have further impacts on them. Implications for Practice: Patients and caregivers who received care during the pandemic may need further support. Isolation of patients should be avoided where possible, and rules should be consistent for all AYA patients. Staff should be reminded of the impact their conduct can have on patients and caregivers, both positively and negatively. Foundational: There is little currently known about the long term impact of having cancer during COVID-19 for the AYA cohort. This report makes suggestions on areas which will need attention.

The Emotional Impact of a Cancer Diagnosis: A Qualitative Study of Adolescent and Young Adult Experience

“…Furthermore, evidence suggests young people with cancer have poorer mental health than their non-cancer peers [57] and poorer mental health was associated with increased healthcare utilization [25]. There is evidence of an increase in mental health concerns in this population following the COVID-19 pandemic [3,22,34].…”

“…Historically, there used to be a dichotomy in AYAs' receipt of healthcare-some being treated in pediatric services, and some in disease-centered adult oncology services. Given the specific biology of AYA cancers, specificity of late effects, as well as age-related developmental differences compared to children and adults, this model resulted in a large level of unmet need [2][3][4]. This led to a motivation to shape the care of AYAs in an ageappropriate manner-namely care services tailored and focused on the developmental particularities posed by the age of the patients, rather than being disease-specific [5].…”

“…With the advances in cancer treatments for young people and the increase in those living into older adulthood, it is now critical to better cater to and support the unmet psychosocial needs of this patient group. This is particularly important in a post-pandemic world, which is likely to have impacted them further [3] through concerns related to infection, changes in communication with healthcare professionals, and a shift in the modes of communication and interrelating with peers that may increase feelings of isolation [3,22,23].…”

Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort

“…Core to these experiences were the healthcare professionals working to support these young people. Previous research has found that young people and their caregivers put great value on having staff who are kind and supportive, with an emphasis on staff who take the time to get to know patients and their families beyond the elements of routine care 27…”

“…Previous research has found that young people and their caregivers put great value on having staff who are kind and supportive, with an emphasis on staff who take the time to get to know patients and their families beyond the elements of routine care. 27 A primary aim of TYA cancer care is offering services above and beyond cancer treatment, with a particular emphasis on the holistic needs of young patients. Healthcare workers play a pivotal role in this.…”