Cancer care and well‐being in adolescents and young adults during the coronavirus disease 2019 pandemic: A UK sarcoma perspective

Adolescents and young adults (AYAs) with cancer face particular psychosocial challenges, which may be amplified by the coronavirus disease 2019 (COVID-19) pandemic. Kosir et al examined the impact of the pandemic on cancer care and well-being in AYAs in an online survey.1 The authors highlighted increased levels of anxiety in AYAs and used qualitative data to provide unique insight into possible contributing factors to reduced well-being during the pandemic. In the first month of lockdown, we surveyed 350 patients with sarcoma from two London institutions, including 60 AYAs aged 16 to 39 years (52% male).2 Consistent with the heightened anxiety reported by Kosir et al, AYAs were significantly more likely than adults to report that the pandemic had an impact on their emotional well-being (60% vs 38%; P = .002), and they had significantly lower emotional functioning (measured using the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire [EORTC-QLQ-C30]) to a clinically relevant level (mean score, 63.1 vs 74.6; P = .001). This indicates that adverse psychosocial outcomes during the pandemic may be more prevalent in AYAs than in adults with cancer. Based on their qualitative results, Kosir et al hypothesized that anxiety in AYAs was predominantly driven by health and cancer-related concerns. Conversely, we found no significant difference in the level of worry about the potential impact of COVID-19 on health in AYAs versus adults (10-point scale; mean score ± SD, 5.37 ± 2.66 vs 5.94 ± 2.50; P = .112), and mean cancer worry was slightly higher in adults compared with AYAs (mean score ± SD, 5.64 ± 2.50 vs 4.91 ± 2.80; P = .054). Modifications to care were similar in AYAs and adults, including the proportion of telemedicine appointments (65% vs 60%, respectively) and treatment postponements (2% vs 10%, respectively). These data indicate that care modifications, COVID-19–related, or cancer-related worry may not entirely explain the higher impact on emotional well-being in AYAs. Kosir et al reported that one-half of the participants felt more isolated during the pandemic, however, its impact on anxiety was not explored in depth. The UK Office for National Statistics reported a strong association between loneliness and anxiety in the general population during the pandemic.3 In our study, loneliness was higher in AYAs (33%) than in adults (22%), despite 92% of AYAs living with others. AYAs reporting loneliness had significantly lower emotional functioning than those not reporting loneliness, suggesting this may be a strong contributor to reduced well-being (mean score, 52.9 vs 68.1; P = .048). Lower emotional functioning was also seen in lonely adults (mean score, 54.9 vs 80.3; P < .001), showing the pervasive impact of loneliness across all ages. A sense of belonging among peers and the ability to maintain connections is important for AYAs to reduce social isolation and emotional distress.4, 5 Pre-pandemic, AYAs with cancer may have cherished the opportunity to take their chemotherapy infusion in a backpack to the movies with friends. The pandemic has isolated AYAs, with longer, more intensive shielding compared with peers. However, widespread social distancing restrictions may have narrowed the AYA-peer gap, as noted by some AYAs in the study by Kosir et al. Considering emotional distress in healthy AYAs provides context to the experiences of young people with cancer. A repeated cross-sectional study comparing clinical and community cohorts of young people aged 14 to 28 years found that clinical cohorts had slightly higher mental health symptoms but community cohorts experienced greater deterioration during the pandemic.6 Similarly, a Dutch study of over 4,000 cancer survivors and matched normative participants found slightly higher levels of depression and loneliness in the general population.7 These studies suggest that levels of distress may be similar, or even higher, in healthy populations. The authors acknowledge several limitations to their study, such as the high proportion of females (87%) and participants from different health care systems and continents. Female gender is predictive of increased psychological distress across the cancer disease trajectory and has been associated with higher anxiety during the pandemic.3, 8, 9 A significantly higher proportion of female AYAs in our study reported that COVID-19 had impacted their emotional well-being compared with males (76% vs 45%; P = .015). Additional limitations include the lack of information on cancer type and stage, which lead to differing levels of anxiety and health-related quality of life in AYAs.9 There was also a high proportion of AYAs (37%) who reported pre-existing mental health conditions and may be particularly sensitive to disruption caused by the pandemic. Well-being in AYAs with cancer may be acutely impacted by the pandemic compared with adults, although their concerns likely overlap with healthy AYAs. Evidence-based interventions, such as practical skills sessions that strengthen social support, emotional well-being, and resilience, should be rapidly integrated into care to reduce loneliness.10 Age-appropriate resources are crucial to sustain emotional well-being and safety in AYAs during periods of social isolation. This letter represents independent work supported by the National Institute for Health Research Biomedical Research Center at The Royal Marsden NHS Foundation Trust and the Institute of Cancer Research, London. The views expressed are those of the authors and not necessarily those of the National Institute for Health Research or the Department of Health and Social Care. The authors made no disclosures.

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