Health-Related Quality of Life and Experiences of Sarcoma Patients during the COVID-19 Pandemic

Abstract

Sarcomas are rare cancers with a spectrum of clinical needs and outcomes. We investigated care experiences and health-related quality of life (HRQoL) in sarcoma patients during the COVID-19 pandemic. Patients with appointments during the first two months of the UK lockdown were invited to complete a survey. Questions included views on care modifications, COVID-19 worry and psychosocial impact, and EORTC-QLQ-C30 items. 350 patients completed the survey; median age 58 (16–92) years. Care modifications included telemedicine (74%) and postponement of appointments (34%), scans (34%) or treatment (10%). Most felt the quality of care was not affected (72%), however, social life (87%) and emotional wellbeing (41%) were affected. Worry about COVID-19 infection was moderately high (mean 5.8/10) and significantly related to higher cancer-related worry; associated with lower emotional functioning irrespective of treatment intent. Curative patients (44%) with low resilient coping scores had significantly higher COVID-19 worry. Patients who did not know their treatment intent (22%) had significantly higher COVID-19 worry and insomnia. In summary, care experiences were generally positive; however, cancer-related worry, low resilient coping and uncertainty about treatment intent were associated with COVID-19 worry. These patients may benefit from additional psychological support during the pandemic and beyond.

Cancer management during the COVID-19 pandemic: Choosing between the devil and the deep blue sea

“…Additionally, 20.8% felt to be under severe distress and 4% reported suffering from insomnia ( Greco et al, 2020 ). In a like manner, 41% of the participants in a survey designed for sarcoma patients reported that their emotional wellbeing has been affected in the COVID-19 period ( Younger et al, 2020 ). Bakkar et al reported that a delay in receiving conventional radioactive iodine ablation placed thyroid cancer patients in the mild-to-moderate anxiety group according to the HAM-A scale.…”

Cancer Services During the COVID-19 Pandemic: Systematic Review of Patients’ and Caregivers’ Experiences

“…(III) Communication in relation to cancer care Disruptions in regular communications between patients and health services were commonly reported including the use of remote forms of communications using video technology or telephone [17,20,22,30,35]. Patients identi ed positive aspects of telecommunication for example, the ease of accessing care from the privacy and comfort of one's home and the ability to maintain physical distance [22].…”

“…The majority of patients in one study hoped for continuation of online services post-pandemic [25]. In another study, almost two-thirds of patients felt that despite virtual means, they were still able to contact the healthcare team and so expressed feelings of reassurance [35]. However in one study conducted in India, patients reported di culties in booking a virtual appointments and unpredictable network issues [30].…”

“…(I) Experiences of accessing cancer screening and diagnostic services Disruption to cancer screening and diagnosis was a common theme reported in the included studies. A crosssectional survey assessing the experiences of sarcoma patients at two of the largest specialist sarcoma centres in Europe reported that one-third of patients experienced postponement of appointments or scans by at least three months [35]. Patients also reported cancellations of routine follow-up clinic appointments in two studies, each conducted in the UK and US [31,34].…”

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

“…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 wellbeing (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.…”