PURPOSE: Many patients with cancer, often those with rare cancers such as sarcomas, travel long distances to access expert care. The COVID-19 pandemic necessitated widespread changes in delivery of cancer care, including rapid adoption of telemedicine-based care. We aimed to evaluate the impact of telemedicine on patients, clinicians, and care delivery at the Royal Marsden Hospital (RMH) Sarcoma Unit during the pandemic. METHODS: Data were extracted from patient records for all planned outpatient appointments at the RMH Sarcoma Unit from March 23 to April 24, 2020. Patients and clinicians completed separate questionnaires to understand their experiences. RESULTS: Of 379 planned face-to-face appointments, 283 (75%) were converted to telemedicine. Face-to-face appointments remained for patients who needed urgent start of therapy or performance status assessment. Patients lived on average > 1.5 hours from RMH. Patient satisfaction (n = 108) with telemedicine was high (mean, 9/10), and only 48% (n = 52/108) would not want to hear bad news using telemedicine. Clinicians found telemedicine efficient, with no associated increased workload, compared with face-to-face appointments. Clinicians indicated lack of physical examination did not often affect care provision when using telemedicine. Most clinicians (n = 17; 94%) believed telemedicine use was practice changing; congruently, 80% (n = 86/108) of patients desired some telemedicine as part of their future care, citing reduced cost and travel time. CONCLUSION: Telemedicine can revolutionize delivery of cancer care, particularly for patients with rare cancers who often live far away from expert centers. Our study demonstrates important patient and clinician benefits; assessment of longer-term impact on patient outcomes and health care systems is needed.

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.

Desmoid fibromatosis (DF) is a rare, unpredictable disease with no established, evidence-based treatments. Individual management is based on consensus algorithms. This study aimed to examine the specific health-related quality of life challenges faced by DF patients, current experiences and expectations of care.

Sarcomas are rare, heterogeneous tumours affecting patients of any age. Previous surveys describe that sarcoma patients report a significantly worse experience than those with common cancers. Consequently, Sarcoma UK conducted a national survey and these data were examined for age- and tumour-related differences in patients’ experiences. Patients were randomly selected from respondents to National Cancer Patient Experience Surveys (n = 900). Differences between patient groups according to age (Adolescents and Young Adults [AYA] 18–39 years, middle-aged 40–64 years, elderly 65 + years) and tumour type (soft-tissue [STS] vs. bone]) were analysed with t-tests or chi-square tests. Survey response rate was 62% (n = 558; STS 75%, bone sarcoma 25%). Delay in diagnosis was reported; 27% patients (n = 150) waited > 3 months and initial symptoms were incorrectly interpreted; AYA STS patients were significantly more likely to be treated for another condition, or advised that their symptoms were not serious, than older STS patients. Clinical trial participation was low (6%, n = 35). Symptom burden was high, most commonly daytime fatigue (48%, n = 277) and pain (44%, n = 248). AYAs were significantly more likely to report most side-effects and post-treatment concerns than older patients. Elderly patients were more satisfied with the information and emotional support provided than younger patients, however were significantly less likely to be referred to rehabilitation services. This study identifies significant age-related differences in the sarcoma patient journey, which are not only related to variation in tumour-types. These results provide rationale for adopting an age-specific approach to the management of sarcoma patients in order to improve overall patient experience.

Background: Almost half of patients diagnosed with soft tissue sarcoma (STS) are older than 65 years; however, the outcomes of elderly patients with metastatic disease are not well described. Patients and Methods: An elderly cohort of patients aged ≥65 years was extracted from the European Organization for Research and Treatment of Cancer (EORTC) Soft Tissue and Bone Sarcoma Group database of patients treated with first-line chemotherapy for advanced STS within 12 EORTC clinical trials. Endpoints were overall survival (OS), progression-free survival (PFS), and response rate (RR). Results: Of 2,810 participants in EORTC trials, there were 348 elderly patients (12.4%, median 68 years; interquartile range [IQR], 67–70; maximum 84 years) and 2,462 patients aged <65 years (median 49 years; IQR, 39–57). Most elderly patients had a performance status of 0 (n = 134; 39%) or 1 (n = 177; 51%). Leiomyosarcoma (n = 130; 37%) was the most common histological subtype. Lung metastases were present in 181 patients (52%) and liver metastases in 63 patients (18%). Overall, 126 patients (36%) received doxorubicin, 114 patients (33%) doxorubicin + ifosfamide, 43 patients (12%) epirubicin, 39 patients (11%) trabectedin, and 26 patients (7%) ifosfamide. Overall RR was 14.9% (n = 52), median PFS was 3.5 months (95% confidence interval [CI], 2.7–4.3), and median OS was 10.8 months (95% CI, 9.43–11.83). In patients aged <65 years, overall RR was 20.3% (n = 501), median OS was 12.3 months (95% CI, 11.9–12.9), and median PFS was 4.3 months (95% CI, 3.9–4.6). Conclusion: Elderly patients with metastatic STS treated with first-line chemotherapy were largely underrepresented in these EORTC STS trials. Their outcomes were only slightly worse than those of younger patients. Novel trials with broader eligibility criteria are needed for elderly patients. These trials should incorporate geriatric assessments and measurements of age-adjusted health-related quality of life. Implications for Practice: This analysis demonstrates that elderly patients with advanced soft tissue sarcoma are underrepresented in clinical trials of first-line chemotherapy by the European Organization for Research and Treatment of Cancer Soft Tissue and Bone Sarcoma Group. Furthermore, the elderly participants were generally of excellent performance status, which is not representative of an unselected elderly population. These data provide rationale for development of novel trials for elderly patients that are not only for “elite” patients but include comprehensive geriatric assessments for risk stratification. Because chemotherapy for advanced soft tissue sarcomas is largely given with palliative intent, incorporation of health-related quality of life measures with traditional endpoints will provide a more holistic approach to future clinical trials.