Husson, O

Ingley, KM

Lidington, EK

Smrke, A

Strauss, SJ

Younger, E

English

UCL Discovery

1  Title: Cancer care and wellbeing in adolescents and young adults during the COVID-19 pandemic: a UK sarcoma perspective  Authors: Emma Lidington, MSc,1 Katrina M Ingley, MBChB, FRACP, FRCPA,2 Alannah Smrke, MD,1 Sandra J Strauss, FRCP PhD,2 Olga Husson, PhD,1,3 Eugenie Younger, MBChB 1  Institutions: The Royal Marsden NHS Foundation Trust,1 University College London Hospitals NHS Foundation Trust,2 The Institute of Cancer Research3  Corresponding author:  Olga Husson 15 Cotswold Road Sutton SM2 5NG +44 2078 082457 Olga.husson@icr.ac.uk   Funding: This letter represents independent work supported by the National Institute for Health Research (NIHR) Biomedical Research Centre 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 NIHR or the Department of Health and Social Care.  Conflict of interest: All authors declare no conflict of interest.  Acknowledgements: We would like to thank the patients who took part in the survey studies and for the support of the Royal Marsden and University College London sarcoma units in patient recruitment for the initial study.   2  Precis: Wellbeing in adolescents and young adults (AYAs) with cancer may be acutely impacted by the pandemic compared to adults, though their concerns likely overlap with healthy AYAs. Loneliness is an important contributing factor to reduced wellbeing in young people during the pandemic.   Keywords: Psycho-oncology, Adolescent, Young adult, COVID-19, Mental health, Sarcoma  Total number: (1) text pages: 5; (2) tables: 0; (3) figures: 0; (4) supporting files for publication: 0  Main text:  Adolescents and young adults (AYAs) with cancer face particular psychosocial challenges which may be amplified by the COVID-19 pandemic. Kosir et al. examined the impact of the pandemic on cancer care and wellbeing in AYAs in an online survey.1 The authors highlight increased levels of anxiety in AYAs and used qualitative data to provide unique insight into possible contributing factors to reduced wellbeing during the pandemic.     In the first month of lockdown we surveyed 350 sarcoma patients from two London institutions, including 60 AYAs ages 16-39 (52% male).2 Consistent with the heightened anxiety found by Kosir et al., AYAs were significantly more likely than adults to report the pandemic had an impact on their emotional wellbeing (60% vs. 38%; p=0.002) and had significantly lower emotional functioning (EORTC-QLQ-C30) to a clinically relevant level (mean 63.1 vs. 74.6; p=0.001). 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 potential impact of COVID-19 on health in AYAs versus adults (ten-point scale; mean 5.37 {SD2.66} vs. 5.94 {SD2.50}; p=0.112), and mean cancer worry was slightly higher in adults compared to AYAs (mean 5.64 {SD2.5} vs. 4.91 {SD2.8}; p=0.054). Modifications to care were similar in AYAs and adults, including the proportion of telemedicine appointments (65% vs. 60%) and 3  treatment postponements (2% vs. 10%). These data indicate that care modifications, COVID-19 or cancer-related worry may not entirely explain the higher impact on emotional well-being in AYAs.    Kosir et al. reported that half 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 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 wellbeing (mean 52.9 vs. 68.1; p=0.048). Lower emotional functioning was also seen in lonely adults (mean 54.9 vs. 80.3; p<0.001), showing the pervasive impact of loneliness across all ages.     A sense of belonging amongst 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 to peers. However, widespread social distancing restrictions may have narrowed the AYA-peer gap, as noted by some AYAs in Kosir et al.’s study.   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 ages 14 to 28 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 4000 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 healthcare systems and continents. Female gender is predictive of increased psychological distress across the cancer disease trajectory and has been associated 4  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 wellbeing compared to males (76% vs. 45%; p=0.015). 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.    Wellbeing in AYAs with cancer may be acutely impacted by the pandemic compared to adults, though their concerns likely overlap with healthy AYAs. Evidence-based interventions such as practical skills sessions that strengthen social support, emotional wellbeing and resilience should be rapidly integrated into care to reduce loneliness.10 Age appropriate resources are crucial to sustain emotional wellbeing and safety in AYAs during periods of social isolation. References: 1.  Košir U, Loades M, Wild J, et al. The impact of COVID-19 on the cancer care of adolescents and young adults and their well-being: Results from an online survey conducted in the early stages of the pandemic. Cancer. 2020:1-9. doi:10.1002/cncr.33098 2.  Younger E, Smrke A, Lidington E, et al. Health-Related Quality of Life and Experiences of Sarcoma Patients during the COVID-19 Pandemic. Cancers. 2020;In Press. 3.  Office for National Statistics. Coronavirus and Anxiety, Great Britain: 3 April 2020 to 10 May 2020.; 2020. https://www.ons.gov.uk/ Peoplepopulationandcommunity/Wellbeing/Articles/Coronavirusandanxietygreatbritain/3April2020To10May2020. 4.  Mascarin M, Ferrari A. The concept of friendship in adolescents with cancer: Reflections and experiences. Tumori. 2019;105(1):5-11. doi:10.1177/0300891618792464 5.  Bibby H, White V, Thompson K, Anazodo A. What Are the Unmet Needs and Care Experiences of Adolescents and Young Adults with Cancer? A Systematic Review. J Adolesc Young Adult Oncol. 2017;6(1):6-30. doi:10.1089/jayao.2016.0012 5  6.  Hawke LD, Barbic SP, Voineskos A, et al. Impacts of COVID-19 on Youth Mental Health, Substance Use, and Well-being: A Rapid Survey of Clinical and Community Samples. Can J Psychiatry. 2020:1-9. doi:10.1177/0706743720940562 7.  Poll-Franse LV van de, Rooij BH de, Horevoorts N, et al. The impact of the COVID-19 crisis on perceived changes in care and wellbeing of cancer patients and norm participants: Results of the PROFILES registry. In: European Society Medical Oncology Conference. 2020. 8.  Vindegaard N, Eriksen Benros M. COVID-19 pandemic and mental health consequences: Systematic review of the current evidence. Brain Behav Immun. 2020:1-12. doi:10.1016/j.bbi.2020.05.048 9.  Sansom-Daly UM, Wakefield CE. Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review. Transl Pediatr. 2013;2(4):167-197. doi:10.3978/j.issn.2224-4336.2013.10.06 10.  Rosenberg AR, Bradford MC, McCauley E, et al. Promoting resilience in adolescents and young adults with cancer: Results from the PRISM randomized controlled trial. Cancer. 2018;124(19):3909-3917. doi:10.1002/cncr.31666  

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

https://discovery.ucl.ac.uk/id/eprint/10115578/3/Strauss_Cancer%20care%20and%20well-being%20in%20adolescents%20and%20young%20adults%20during%20the%20coronavirus%20disease%202019%20pandemic_AAM.pdf

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

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