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      Lessons learned about virtual cancer care and distress screening in the time of COVID-19

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          Abstract

          Purpose

          Cancer-related biopsychosocial distress is highly prevalent across the cancer care continuum. The implementation of screening patients for biopsychosocial distress has become a standard of practice in cancer care. With the presence of COVID-19, clinical care has shifted from in-person care to virtual care in many instances. One of the realities of COVID-19 is the significant decrease in screening patients for biopsychosocial symptom burden.

          Methods

          Given that screening for distress has become an accreditation standard in many cancer programs, in the province of Alberta, Canada, all patients are screened for distress with every visit to the cancer centre. Given the presence of COVID-19, much of cancer care has shifted to being delivered virtually (through mediums such as Zoom). In this paper, we present pre- and post-COVID data on the frequency of distress screening and its impact on patient care.

          Results

          A review of pre- and post-COVID-19 screening for distress questionnaires revealed that patients who received virtual care were less satisfied in the areas of emotional support and received less resources and referrals to supportive care.

          Conclusion

          The rapid integration of virtual care without the inclusion of a standardized distress screening tool was akin to a natural experiment, as two groups (virtual and in-person clinic patients) received different levels of care and interventions. Without the inclusion of distress screening, the clinical conversation around symptoms is less likely to occur and results in fewer referrals to best practices in supportive care services. Lessons learned about virtual cancer care without distress screening in the time of COVID-19 demonstrates significantly fewer patients being screened for distress and subsequently has resulted in less supportive care referrals. Going forward, we must find ways to ensure that virtual cancer care continues to support distress screening and best patient-centric care.

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          Most cited references7

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          A multicenter study comparing two numerical versions of the Edmonton Symptom Assessment System in palliative care patients.

          The Edmonton Symptom Assessment System (ESAS) is a widely used, self-report symptom intensity tool for assessing nine common symptoms in palliative care, with ratings ranging from 0 (none, best) to 10 (worst). Based on a "think-aloud" study of 20 advanced cancer patients, the ESAS was revised (ESAS-r). To compare the consistency of patients' symptom ratings and obtain patient perspectives regarding ease of understanding and completion between the ESAS and ESAS-r. Cognitively intact patients (n=160) were recruited from eight palliative care sites in Canada and Switzerland, using cross-sectional sampling (20 per site). Consenting patients completed the ESAS, ESAS-r, and a structured interview. Intraclass correlation coefficients (ICCs) were calculated to assess rating consistency. In total, 1046 patients were screened. One hundred sixty were enrolled and evaluable (female 51%, median age 61 [range 34-92], lung cancer 26%, gastrointestinal cancer 22%). Mean ESAS scores ranged from 1.2 (nausea, standard deviation [SD] 2.1) to 4.3 (appetite, SD 3.3). ICCs ranged from 0.65 to 0.83, with lowest scores (<0.8) for drowsiness, appetite, and well-being. Although most patients rated both versions as very easy or easy to understand and complete, the ESAS-r was significantly easier to understand than the ESAS (P=0.008). Significantly, more patients preferred the ESAS-r (39%) than the ESAS (14%, P<0.001) because of its definitions, clarity, and format. The ESAS-r retains core elements of the ESAS, with improved interpretation and clarity of symptom intensity assessment. It represents the next generation of ESAS development, with further validation recommended for drowsiness, appetite, and well-being. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
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            Uncertainty upon uncertainty: supportive Care for Cancer and COVID-19

            Introduction Controlling the COVID-19 pandemic is having a significant negative impact on the lives of people with cancer. Despite some recent data on increased infection rates of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) in people with cancer and increased mortality in people with COVID-19 and cancer (1), we struggle to apply these data in real-world oncology practice. Nonetheless, this illness is about people and we have recently been warned by the United Nations of a global mental health crisis due to COVID-19 (2). People with cancer are already uncertain about their future, which is now exacerbated by uncertainty over the risk of contracting the infection and not being able to receive the recommended cancer treatment (3); COVID-19 is also likely to have adversely impacted their social support network including family members, spouses, children and friends. Pandemics thrive on social inequalities and for disadvantaged people with cancer, with or without COVID-19, huge social, psychological and physical consequences may persist for many months or maybe years. ‘Supportive care makes excellent cancer care possible’, the strapline for the Multinational Association of Supportive Care in Cancer (“MASCC”), has never before been more relevant, for all countries at different stages of the pandemic, as increased stressors threaten the wellbeing of people with cancer, their caregivers and healthcare professionals. People with cancer may have built resilience to cope with its uncertainty; however, this resilience may be overwhelmed by competing fears for self and loved ones and by the variability of available psychosocial support from cancer institutions, cancer charities and global aid organizations. In this editorial, we focus on the multi-pronged psychosocial ramifications of COVID-19 for people with cancer and their caregivers and suggest diverse integrated support mechanisms to mitigate the challenges. The challenge The COVID-19 pandemic, understandably, has caused anxiety. A survey of people (n = 1074) mostly from Hubei province, reported a higher rate of anxiety, depression, harmful alcohol use, and lower mental wellbeing during the pandemic (4). For people with cancer and their caregivers, this distress is likely to be amplified by: Avoiding their general practitioners for signs and symptoms of cancer for fear of contracting the infection. Having their cancer treatment delayed, cancelled or changed because of prioritization of COVID-19 cases and an attendant temporary suspension of favoured models of shared decision-making. Delaying surgery, radiotherapy and chemotherapy causes distress about potential negative outcomes (e.g. delaying cancer surgeries for three months is predicted to account for almost 5000 excess deaths in the UK) (5). Knowing of their vulnerability and the importance of avoiding infection e.g., fear of contracting COVID-19 and dying more quickly than from cancer. Complicated grief reactions of families unable to say “goodbye” to dying patients with cancer because of ‘no visitor’ institutional policies What can be done? Each country or regional authority has a duty of care to not only increase public awareness of signs and symptoms of cancer during and after COVID-19 but also to provide pragmatic advice of how to safely consult with the most appropriate healthcare practitioner. The engagement and education of people to safely participate in routine screening and other checks throughout the cancer care continuum, during and post-COVID, are crucial to improve outcomes. Specifically, normalizing anxiety may help and adapting to the new reality with mindfulness, compassion and value-based approaches is beneficial (6). Usual self-care advice on healthy strategies may be offered by healthcare practitioners - good sleep habits, good nutrition and exercise. Nevertheless, such approaches are difficult during crises and patients may require referral to mental health services. Some solutions are simpler; we can seek to make the environment more welcoming and recognizing the individual patient through small gestures e.g. radiation oncologists play the patient’s favourite song and have altered the landscape of the radiotherapy room during COVID-19 (7). A screening tool of ‘fear of COVID-19’, developed in Iran and validated in the Italian population (8), may be used to individualize psychological care. In Paris, telehealth has allowed self-reported monitoring of cancer patients with COVID-19. Nurse navigators regularly assess and address patients’ specific cancer and COVID-19 concerns, comorbidities and social conditions (9). Telephone and video calls are now common to facilitate patient consultations and can serve to provide people with cancer and their caregivers customized information to reduce their anxiety (10). The pandemic also provides new urgency to have frank conversations with patients about their preferences for end-of-life care and the worries they may have about surviving hospitalization. Social challenges There are benefits as well as challenges with the use of social media for information on COVID-19. Self-restraint in the choice and use of social media, is prudent. Clearly, access to accurate information on the COVID-19 crisis is essential for all. Nevertheless, many governments hide behind the crisis to restrict freedom of the press. Socio-economic and socio-political factors globally hugely influence psychological morbidity from COVID-19; cancer patients’ fears are compounded by poverty (11) and living with cancer in conflict settings (12). Prolonged unmonitored quarantine, social distancing, stay at home and avoiding physical contact, can have heavy lasting social repercussions (13). Socializing and sharing experiences is known to reduce anxiety and depression (14); this is not possible in the COVID era and it is unclear if and how the post-COVID era will differ. With COVID-19, there is a greater possibility of becoming unemployed, and in some countries, losing health insurance benefit coverage. The consequences of self-isolation or quarantine for financially at risk patients may lead to despair (15). Patients in financial difficulties should be encouraged to contact social workers or known support networks for expert advice. Telehealth may also reduce the feeling of being abandoned by their doctors; however, with societal ‘digital divide’, telehealth is not the panacea for all (10); a phonecall can help as well. Survivorship post COVID Cancer’s life-changing experience has long lasting effects on patients, their children, spouses and family caregivers. Anxieties of cancer survivors often result from post-treatment physical symptoms (cognitive changes, insomnia or neuropathy). Moderate to severe anxiety and depression is prevalent in 9% and 17% of adult cancer survivors, respectively, 5 and 10 years post diagnosis (16). Against this background, COVID-19 may encourage some cancer survivors to interpret whether symptoms are due to COVID-19 or cancer recurrence and whether to report them, a complicated task for those striving for ‘control’. The MASCC survivorship study group has recently proposed that clinicians advance survivorship care during COVID-19 by triaging the immediate needs of cancer survivors, consider tele-survivorship care and alternate care models other than the specialist setting (17). Born of necessity, these care delivery models may eventually become our new standard. Together we need to be creative, and nimble, when designing individualized care plans that address cancer survivors’ multiple psychosocial needs during COVID. Post-traumatic growth The diagnosis of cancer together with the threat of a novel infection with a relatively high mortality rate and for which there is no current standard therapy, has heightened the stress levels experienced by people with cancer. Nevertheless, from adversity, there are possibilities of positive transformation. The concept of post-traumatic growth (PTG) (18) can provide creative approaches for cancer care. Some PTG studies demonstrate how traumatic life events (such as a critical illness or perceived threat of disease) can also be positively transformational for individuals. PTG may not be a linear process as the person may shift between positive and negative states of being, but positive outcomes are more likely when the individual feels connection and greater control over their life decisions and actions. Psychosocial and behavioural research studies in people with cancer and their caregivers have identified different coping strategies to facilitate a positive reframing of negative circumstances, including emphases on interpersonal relations, problem-solving skills and prosocial behaviours (19). Formal or informal means of peer support and interventions to facilitate cognitive reframing will become increasingly more important in the COVID and post-COVID eras of cancer care, and resources should be directed to facilitate these strategies. Successful telehealth technologies also strive to improve social connection implemented during COVID-19 strategies and could carry on post-COVID. These have been successfully demonstrated by the adaptation of the Maggie’s Cancer Caring Centre model to on-line delivery where peer support is available through online support groups, facilitated by trained healthcare professionals (20). Having a functionality that facilitates treatment plan adherence, toxicity identification and management, and bi-directional messaging can allow patients to have strong “ties” to their healthcare team and thereby help mitigate the psychosocial sequelae brought about by “distance”, and perhaps yield a stronger sense of ‘control’ (21). Conclusion It is natural for people to be distressed during and post-pandemic. This distress intensifies in people at risk of or living with cancer. Although initially the cancer may have been ‘forgotten’ by healthcare systems whilst simultaneously struggling to protect patients from coronavirus and deliver care to those most in need, a rapid adaptation of approaches, including psychosocial interventions and telehealth to provide patient-focused support, have been evident. Simply put, cancer programmes must engage their patients: keep in touch (in-person when possible and virtually when physical proximity is precluded), listen, hear, look out for those most at risk, reassure according to the patient’s values and preferences, monitor and triage psychosocial needs. Post-COVID-19, we can expect to see ongoing economic crises and this challenge will be even more profound in low resource communities. We can expect ‘new norms’ of behaviour regardless of venue, and most clearly in healthcare settings. As we await a vaccine for COVID-19 and better therapeutic approaches, action is needed now. Furthermore, it is critical that clinicians and the public are given access to expert-based usable resources that encourage information exchange and engagement, and foster wellbeing. A comprehensive and integrated strategy is essential to ensure that people with cancer are given the access, care and support they need, as do their care teams, a topic for a future paper. This editorial represents a call to action for healthcare professionals, policymakers and patient groups to acknowledge and include social and psychological factors as risks resulting from the COVID-19 pandemic. This pandemic has highlighted stark inequalities at the societal, institutional and community levels. The need for research, understanding, interventions and action is critical.
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              The NCCN Guideline for Distress Management: A Case for Making Distress the Sixth Vital Sign

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                Author and article information

                Contributors
                bdbultz@ucalgary.ca , barry.bultz@albertahealthservices.ca
                Journal
                Support Care Cancer
                Support Care Cancer
                Supportive Care in Cancer
                Springer Berlin Heidelberg (Berlin/Heidelberg )
                0941-4355
                1433-7339
                10 June 2021
                : 1-6
                Affiliations
                [1 ]GRID grid.22072.35, ISNI 0000 0004 1936 7697, Division of Psychosocial Oncology, Department of Oncology, , Cumming School of Medicine, University of Calgary, ; Calgary, AB Canada
                [2 ]GRID grid.413574.0, ISNI 0000 0001 0693 8815, Department of Psychosocial Oncology, , Tom Baker Cancer Centre, ; 2202 2nd Street SW, Calgary, AB T2S-3C1 Canada
                [3 ]GRID grid.266842.c, ISNI 0000 0000 8831 109X, School of Medicine & Public Health, , University of Newcastle, ; NSW Callaghan, Australia
                [4 ]GRID grid.413574.0, ISNI 0000 0001 0693 8815, Cancer Research and Analytics, Cancer Care Alberta, , Alberta Health Services, ; Calgary, AB Canada
                Author information
                http://orcid.org/0000-0002-6364-7456
                Article
                6322
                10.1007/s00520-021-06322-6
                8192106
                34114098
                282d4a3e-26ef-4f31-92a7-d819735dba94
                © The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature 2021

                This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.

                History
                : 28 April 2021
                : 28 May 2021
                Categories
                Original Article

                Oncology & Radiotherapy
                patient-reported outcomes; distress screening; psychosocial oncology; covid-19

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