ABSTRACT
As COVID-19 spreads across the globe, crowdsourced digital technology harbours the potential to improve surveillance and epidemic control, primarily through increased information coverage, higher information speed, fast case tracking and improved proximity tracing. Targeting those aims, COVID-19-related smartphone and webbased health applications are continuously emerging, leading to a multitude of options, raising ethical and legal challenges and potentially overwhelming end users. Building on an existing trustworthiness checklist for digital health applications, we searched the literature and developed a framework to guide the assessment of smartphone and web-based applications that aim to contribute to controlling the current epidemic or mitigating its effects. It further integrates epidemiological subject knowledge and a legal analysis, outlining the mechanisms through which new applications can support the fight against COVID-19. The resulting framework includes 40 questions across 8 domains on "purpose", "usability", "information accuracy", "organisational attributes / reputation", "transparency", "privacy" and "user control / self-determination". All questions should be primarily answerable from publicly available data, as provided by application manufacturers. The framework aims to guide end users in choosing a transparent, safe and valuable application and suggests a set of information items that developers ideally make available to allow a balanced judgement and facilitate the trustworthiness of their products.Copyright © 2020 EMH Schweizerischer Arzteverlag AG. All rights reserved.
ABSTRACT
Introduction According to Braun and Clarke, thematic analysis (TA) is a family of methods that entail familiarization with the data;generating initial codes;conceptualizing, reviewing, naming, and defining themes;and writing a report. We conducted a multicentric qualitative study investigating the experiences of individuals treated for cancer during the COVID-19 pandemic in different language regions and countries. We aim to describe our procedures for selecting an approach to TA;generating codes;and conceptualizing themes and sub themes capturing common and distinct experiences across sites. Methods Our team was comprised of multilingual investigators from Switzerland and the United States. We formed site-specific workgroups to recruit local participants and conduct interviews in one of five languages. Principal challenges were to (a) ensure consistency in qualitative data collection;(b) construct shared interpretations of qualitative data while preserving context-specific nuance;and (c) develop and maintain a large data set supporting iterative analyses by multiple workgroups. Results Adopting a pragmatic worldview, we planned and conducted a codebook TA. We validated data collection materials with each workgroup;developed a codebook;analyzed data deductively and inductively;and used MAX QDA software to facilitate data management. Table 1 details our approach. Conclusions Investigators using TA in disparate contexts face unique methodological challenges. Research to establish best practices is warranted.
ABSTRACT
Introduction Literature on the impact of COVID-19 on cancer patients pointed towards an increase in uncertainty, anxiety, fear and distress. Our aim was to analyze cancer patient-reported experiences through a qualitative approach to identify their potential concerns, needs and resources during the pandemic and to evaluate their levels of distress and resilience. Methods Semi-structured telephone interviews were conducted after the second wave, March to July 2021, with cancer patients from three hospitals in the French-speaking part of Switzerland. Transcripts were analyzed using an iterative thematic analysis approach. Quantitative data included measurement of distress and resilience by the NCCN distress thermometer and the 2-item Connor-Davidson Resilience Scale. Results Patients with lung, breast, colon cancer or melanoma were included (n=35). Mean distress score was 2 (SD=2.1) and mean resilience score was 6.7 (SD=1.3). Thematic analysis highlighted five themes evoking changes in life, concerns, cancer care, resources and vaccination. Conclusions Cancer patients from the French-speaking part of Switzerland reported relatively low distress and high resilience. Nevertheless, interviews revealed COVID-related elements having an influence on patients' lives and trajectory of care. These results allow for a better understanding of the cancer patients' experiences during the COVID-19 pandemic in Switzerland and provide suggestions for better support.
ABSTRACT
Background: Impact of the COVID-19 outbreak on cancer patients may be high in terms of anxiety, fear and psychological distress;however, this topic remains under-addressed. We aim to describe cancer patient experiences related to the COVID-19 pandemic in Switzerland. Information gained through in-depths interviews will be triangulated with the level of distress and resilience. Methods: Purposive sampling will be used to recruit four patient subgroups diagnosed with melanoma, breast, lung, or colon cancer (i) under adjuvant treatment;(ii) under anti-cancer treatment with palliative intent;(iii) being consulted at institutes for complementary and integrative medicine (ICIM);(iv) being consulted by clinical nurse specialists (CNS). Interview guides were developed based on qualitative analysis of public online cancer patients’ forums from four different countries. We selected main posts related to COVID-19. Semantic and inductive thematic analysis approaches were used to identify meaningful patterns and themes. The level of distress and resilience will be measured by the NCCN Distress Thermometer and the 2-item Connor-Davidson-Resilience Scale. We aim to include 120 patients (10 participants per subgroup in each language region). Recruitment will start in September 2020. Results: The design of the study as well as preliminary data regarding themes and subthemes identified in the patient’s forum analysis will be presented. Conclusions: To the best of our knowledge, no patient experience study with a qualitative design is conducted or planned with cancer patients during COVID-19 pandemic in Europe. The study will serve to identify concerns, unmet information and clinical needs and potential positive experiences of patients with cancer in relation to the COVID-19 pandemic. Newly developed patient reported measures should be based on qualitative data. The identification of topics considered important to patients will thus support the development of patient reported experience measures for the current or future epidemics/pandemics. Legal entity responsible for the study: The authors. Funding: Has not received any funding. Disclosure: S. Colomer-Lahiguera: Travel/Accommodation/Expenses: Vifor pharma. M. Eicher: Travel/Accommodation/Expenses: Vifor pharma;Honoraria (institution): Vifor pharma;Honoraria (institution), Research grant/Funding (institution): BMS;Honoraria (institution), Research grant/Funding (institution): Roche;Research grant/Funding (institution): Kaiku Health. All other authors have declared no conflicts of interest.