User Focus Groups Research Articles

Experience-based co-design to develop innovative telehealth physiotherapy interventions and resources for children and young people with asthma and dysfunctional breathing

Introduction Healthcare requires new technologies to deliver hybrid services. Before embedding health-delivery transformations including physiotherapy in asthma clinics, it is essential to give young people and their carers a voice to facilitate co-designing of services. Objective To co-design hybrid telehealth physiotherapy services and online resources for, and in partnership with, young people with asthma and dysfunctional breathing, and their families. Methods Experience based co-design study undertaken at a specialist paediatric difficult asthma clinic, including online service user focus groups and electronic questionnaires for service providers. Eight children aged between 11 and 17 years and their families and 11 members of the multi-disciplinary team (MDT) managing children with difficult asthma were recruited purposively. Results A series of seven online videos were created, topics included: how to support a breathless child, education on how we breathe, breathing patterns, symptom differentiation, breathlessness, rescue breathing techniques, and exercise. Each video has downloadable resources. Five children and four parents wrote blogs to share their experiences. A live online 12-week physiotherapy program was developed on a web-based platform www.beamfeelgood.com called Asthma Kids. Conclusion Co-design enabled partnership working to develop hybrid telehealth physiotherapy services and prototype interventions to support home practice for children with asthma and dysfunctional breathing.

Development of a family-level intervention for families with transgender and/or nonbinary youth: Lessons and recommendations.

Family support plays an important role in promoting resilience and health among transgender and/or nonbinary youth (TNBY), but family members often experience barriers to supporting their TNBY, including minority-adjacent stress stemming from exposure to structural stigma and antitransgender legislation. TNBY and their families need effective family-level interventions developed using community-based participatory research (CBPR), which integrates community members (e.g., TNBY, family members, service providers for families with TNBY) into the intervention development process to ensure the resulting intervention is relevant and useful. Informed by findings from the Trans Teen and Family Narratives Project, we used CBPR to develop the Trans Teen and Family Narratives Conversation Toolkit, a family-level intervention designed to educate families about TNBY and facilitate conversations about gender. The toolkit was developed across 1.5 years (June 2019 to January 2021) using four integrated phases: (1) content development: digital storytelling workshop with TNBY; (2) content review: digital storyteller interviews and user focus groups; (3) content development: study team content synthesis and website development; and (4) content review: website review by TNBY, family members, and mental health providers, and intervention refinement. This article outlines the intervention development process, describes strategies employed to navigate challenges encountered along the way, and shares key learnings to inform future CBPR intervention development efforts. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Co-Designing a Smoking Cessation Chatbot: Focus Group Study of End Users and Smoking Cessation Professionals.

Our prototype smoking cessation chatbot, Quin, provides evidence-based, personalized support delivered via a smartphone app to help people quit smoking. We developed Quin using a multiphase program of co-design research, part of which included focus group evaluation of Quin among stakeholders prior to clinical testing. This study aimed to gather and compare feedback on the user experience of the Quin prototype from end users and smoking cessation professionals (SCPs) via a beta testing process to inform ongoing chatbot iterations and refinements. Following active and passive recruitment, we conducted web-based focus groups with SCPs and end users from Queensland, Australia. Participants tested the app for 1-2 weeks prior to focus group discussion and could also log conversation feedback within the app. Focus groups of SCPs were completed first to review the breadth and accuracy of information, and feedback was prioritized and implemented as major updates using Agile processes prior to end user focus groups. We categorized logged in-app feedback using content analysis and thematically analyzed focus group transcripts. In total, 6 focus groups were completed between August 2022 and June 2023; 3 for SCPs (n=9 participants) and 3 for end users (n=7 participants). Four SCPs had previously smoked, and most end users currently smoked cigarettes (n=5), and 2 had quit smoking. The mean duration of focus groups was 58 (SD 10.9; range 46-74) minutes. We identified four major themes from focus group feedback: (1) conversation design, (2) functionality, (3) relationality and anthropomorphism, and (4) role as a smoking cessation support tool. In response to SCPs' feedback, we made two major updates to Quin between cohorts: (1) improvements to conversation flow and (2) addition of the "Moments of Crisis" conversation tree. Participant feedback also informed 17 recommendations for future smoking cessation chatbot developments. Feedback from end users and SCPs highlighted the importance of chatbot functionality, as this underpinned Quin's conversation design and relationality. The ready accessibility of accurate cessation information and impartial support that Quin provided was recognized as a key benefit for end users, the latter of which contributed to a feeling of accountability to the chatbot. Findings will inform the ongoing development of a mature prototype for clinical testing.

Participatory Approaches in the Context of Research Into Workplace Health Promotion to Improve Physical Activity Levels and Reduce Sedentary Behavior Among Office-Based Workers: Scoping Review.

Participatory research (PR) involves engaging in cocreation with end users and relevant stakeholders throughout the research process, aiming to distribute power equitably between the end users and research team. Engagement and adherence in previous workplace health promotion (WHP) studies have been shown to be lacking. By implementing a PR approach, the insights of end users and stakeholders are sought in the co-design of feasible and acceptable intervention strategies, thereby increasing the relevance of the research. This scoping review aims to explore, identify, and map PR techniques and their impact when used in office-based WHP interventions designed to improve physical activity (PA) or reduce sedentary behavior (SB). The reporting of this scoping review followed the PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews). A systematic literature search of 5 electronic databases-Web of Science, PubMed, Scopus, Google Scholar, and OpenGrey-was conducted, searching from January 1, 1995, to February 8, 2023. In total, 2 independent reviewers first screened the retrieved articles by title and abstract, and then assessed the full texts based on the inclusion and exclusion criteria. The search strategy and eligibility criteria were developed and guided by an a priori population (office-based working adults), intervention (a PA WHP intervention that took a PR approach), comparison (no comparison required), and outcome (PA or SB) framework. Data were charted and discussed via a narrative synthesis, and a thematic analysis was conducted. The included studies were evaluated regarding the degree of end user engagement throughout the research process and power shared by the researchers, using Arnstein's ladder of citizen participation. The search retrieved 376 records, of which 8 (2.1%) met the inclusion criteria. Four key strategies were identified: (1) end user focus groups, (2) management involvement, (3) researcher facilitators, and (4) workplace champions. The degree of engagement and power shared was relatively low, with 25% (2/8) of the studies determined to be nonparticipation studies, 25% (2/8) determined to be tokenistic, and 50% (4/8) determined to provide citizen power. This review provides a foundation of evidence on the current practices when taking a PR approach, highlighting that previous office-based PA WHP studies have been largely tokenistic or nonparticipative, and identified that the end user is only engaged with in the conception and implementation of the WHP studies. However, a positive improvement in PA and reduction in SB were observed in the included studies, which were largely attributed to implementing a PR approach and including the end user in the design of the WHP intervention. Future studies should aim to collaborate with workplaces, building capacity and empowering the workforce by providing citizen control and letting the end users "own" the research for a sustainable WHP intervention. RR2-10.1136/bmjopen-2021-054402.

ANALISIS KOMPARATIF UX DESIGN PADA PLATFORM EDUKASI ONLINE

User experience is the result of what the user feels and thinks when using a product or service, and makes the user experience subjective, therefore the user experience (user experience) can be tested in conjunction with other tests to get an objective assessment of the user when can be done directly with the product. This study will discuss the user experience using the User Experience Questionnaire and Focus Group Discussion methods. The process to be carried out is by using the Brainly and Quora applications obtained from the UEQ and FGD test questionnaires through interviews and data interviews from questionnaires. Based on the results of this study, the results of the analysis and comparisons with UEQ and FGD were obtained. The first test objectively used direct testing to respondents using the UEQ questionnaire which has 6 scales, namely: attractiveness, efficiency, perspective, dependability, stimulation and novelty, which are given to 11 respondents. Second, subjective testing using Focus Group Discussion for perceptions and more detailed user problems with interviews. From the second test conducted, it can be denied that the Brainly application is superior to Quora.

Evaluation of variation in special educational needs provision and its impact on health and education using administrative records for England: umbrella protocol for a mixed-methods research programme

IntroductionOne-third of children in England have special educational needs (SEN) provision recorded during their school career. The proportion of children with SEN provision varies between schools and demographic groups, which...

The Large-Scale Implementation of a Health Information System in Brazilian University Hospitals: Process and Outcomes.

Governments around the globe are paving the way for healthcare services that can have a profound impact on the overall well-being and development of their nations. However, government programs to implement health information technologies on a large-scale are challenging, especially in developing countries. In this article, the process and outcomes of the large-scale implementation of a hospital information system for the management of Brazilian university hospitals are analyzed. Based on a qualitative approach, this research involved 21 hospitals and comprised a documentary search, interviews with 24 hospital managers and two system user focus groups, and a questionnaire of 736 respondents. Generally, we observed that aspects relating to the wider context of system implementation (macro level), the managerial structure, cultural nuances, and political dynamics within each hospital (meso level), as well as the technology, work activities, and individuals themselves (micro level) acted as facilitators and/or obstacles to the implementation process. The dynamics and complex interactions established between these aspects had repercussions on the process, including the extended time necessary to implement the national program and the somewhat mixed outcomes obtained by hospitals in the national network. Mostly positive, these outcomes were linked to the eight emerging dimensions of practices and work processes; planning, control, and decision making; transparency and accountability; optimization in the use of resources; productivity of professionals; patient information security; safety and quality of care; and improvement in teaching and research. We argued here that to maximize the potential of information technology in healthcare on a large-scale, an integrative and cooperative vision is required, along with a high capacity for change management, considering the different regional, local, and institutional contexts.

The Impact of TikTok on Combating and Filtering Hoax News: A Mixed-Methods Study

In an era marked by the rapid dissemination of information on social media, the prevalence of hoax news has emerged as a formidable challenge, affecting the credibility of digital platforms and the veracity of information. This research investigates the role of TikTok, a prominent short-form video-sharing platform, in curbing and filtering hoax news. Utilizing a mixed-methods approach, our study combines content analysis, surveys, user interviews, and analysis of fact-checking reports to comprehensively assess TikTok's influence. Initial findings from content analysis revealed a significant presence of hoax news on TikTok, encompassing false claims, conspiracy theories, and deceptive narratives. However, a striking observation emerged over the course of a year, as a noticeable reduction in the prevalence of hoax news content was noted, suggesting TikTok's efforts to combat misinformation. Survey data shed light on user awareness, behaviors, and perceptions of hoax news on TikTok, highlighting varying levels of concern and trust in the platform's content moderation mechanisms. Qualitative insights gathered from user interviews and focus groups offered diverse perspectives, ranging from appreciation for TikTok's initiatives to skepticism about its effectiveness. The analysis of fact-checking reports underscored TikTok's proactive approach in addressing hoax news, with a significant proportion of reports debunking such content. These findings collectively demonstrate TikTok's influence on curbing hoax news. In conclusion, TikTok plays a significant role in mitigating the spread of hoax news, as evidenced by the reduction in its prevalence and the platform's commitment to fact-checking. User attitudes, behaviors, and trust remain pivotal in shaping the dynamics of misinformation. This research contributes to our understanding of the complex interplay between social media platforms and misinformation, emphasizing the need for collaborative efforts among platforms, users, and policymakers to foster a trustworthy digital environment

Let Me Engage You: Peer engagement behaviour on peer-to-peer platforms

This study addresses a crucial gap in current research by introducing the first-ever measurement scale for assessing peer engagement behaviour in peer-to-peer platforms. By scrutinizing its drivers and outcomes, the research aims to decode the complex ecosystem of peer interactions. Leveraging rich data drawn from 15 managerial interviews, four focus groups of platform users, and a robust survey involving 672 peer consumers, the study unveils a compelling link: the quality of relationships directly amplifies peer engagement, which subsequently fuels value co-creation within these platforms. This pivotal revelation not only offers fresh theoretical contributions but also opens the door to transformative practical implications, setting the stage for future research.

Analisis Perbandingan User Experience pada Website dan Aplikasi Mobile Shopee Menggunakan UEQ

In the midst of technological developments that are always advancing, the internet is one of the things that makes life easier. The internet itself produces products that are useful for daily activities, for example websites and applications. These two products have many types of usage categories, one of which is e-commerce. E-commerce (electronic commerce) provides a different shopping experience for consumers. One of the e-commerce that is developing in Indonesia is Shopee. Shopee has 2 (two) versions, a mobile application and a website. In this case, of course, the layout of the user interface provided is definitely different. Different layouts certainly provide a different user experience. The purpose of this research is to analyze and evaluate user experience and to find out user perceptions and interaction problems experienced by users when using mobile applications and the Shopee website. This study uses 2 (two) research methods, namely user experience questionnaire and Focus Group Discussion. The results of this analysis show that the mobile application and Shopee website have significant values ​​for each parameter. Both Shopee platforms only have 4 (four) of the 6 (six) parameters that reach 0.8. This shows that the Shopee mobile application and the Shopee website have their own strengths and weaknesses in terms of user experience.

Development and Evaluation of eHealth Services Regarding Accessibility: Scoping Literature Review.

Accessibility is acknowledged as a key to inclusion in the Convention of Rights for People with Disabilities. An inaccessible design can result in exclusion from eHealth and cause disability among people who have impairments. This scoping literature review aimed to investigate how eHealth services have been developed and evaluated regarding accessibility for people with impairments. In line with Arksey and O'Malley's framework for scoping studies and using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR), we conducted a search in 4 databases (PubMed, Scopus, IEEE, and Web of Science) in October 2020 and an update of the search in June 2022. The search strategy was structured according to the PICO model as follows: Population/Problem, digital accessibility for users with impairment; Intervention, health care delivered by any digital solution; Comparison, not applicable; Outcome, use of and adherence to (1) Web Content Accessibility Guidelines (WCAG), (2) other accessibility guidelines, and (3) other means, for designing or evaluating accessibility in eHealth services. A Boolean search was conducted by combining terms related to accessibility and eHealth. All authors participated in screening abstracts according to the eligibility criteria. Each publication, containing a potentially relevant abstract, was read (full text) and assessed for eligibility by 2 authors independently and pairwise. Publications deemed eligible were read by all authors and discussed for consensus. A total of 8643 publications were identified. After abstract screening, 131 publications remained for full-text reading. Of those, 116 publications were excluded as they did not meet the eligibility criteria. Fifteen publications involving studies of 12 eHealth services were included in the study. Of the 15 publications, 2 provided a definition of accessibility, 5 provided an explanation of accessibility, and 8 did not provide any explanation. Five publications used the WCAG to evaluate accessibility when developing eHealth services. One publication used International Organization for Standardization (ISO) 29138, ISO 2941, and ISO/International Electrotechnical Commission (IEC) 30071-1 standards together with the Spanish Association for Standardization (UNE) 139803 standard. Eleven publications used other means to address accessibility, including text-level grading; literature review about accessibility; user tests, focus groups, interviews, and design workshops with target groups of patients, relatives, and health care professionals; and comparative analysis of existing technical solutions to provide information about useful requirements. Although a clear definition of accessibility can enhance operationalization and thus measurability when evaluating accessibility in eHealth services, accessibility was insufficiently defined in most of the included studies. Further, accessibility guidelines and standards were used to a very limited extent in the development and evaluation of eHealth services. Guidelines for developing complex interventions that include guidance for accessibility are motivated to ensure that accessibility will be considered systematically in eHealth services.

Developing and pilot-testing warning messages for risk communication in natural disasters

Early warning systems are an essential tool for managing flood emergencies. Alert and warning applications and mobile-phone messaging services have become increasingly widespread among major international emergency agencies as means of communicating risks to the population, and their effectiveness in reducing human and material damages during flood events is significant. Despite their crucial importance, one of the main challenges in the field of emergency communication is the lack of protocols for systematic and standardized production of warning messages. While emergency agencies produce messages on a diversity of topic areas, there are no protocols for structuring their content according to communication functions, exhaustive identification of the relevant areas of action, or classification of content according to different topics. With a view to this opportunity for improvement, the aim of this article is to propose a method for creating a catalog of warning messages enabling their systematic composition and organization. To exemplify the successive stages in the development of such a catalog, we present here the resources and methodological process followed by the authors of this article when commissioned with this task by the emergency services of the Valencian Autonomous Region (south-east Spain) for flood-risk communication. The warning message catalog was pilot tested with experts and user focus groups. Developing warning message catalogs offers a vital resource that can enhance the outreach and operability of warning systems in the current context of increased flood risk due to climate change.

Tackling Loneliness and Isolation in Older Adults With Virtual Reality: How do We Move Forward?

Current trends in gerontology conceptualize Virtual Reality (VR) as a tool for rehabilitation, lauding its potential for cognitive rehabilitation or as an intervention to reduce cognitive function decline. However, we must take a critical stance and identify not just the potential positive impact, but also how things may go wrong without appropriate guidelines, and the need for careful design around the interaction affordances of the technology. We conducted co-discovery and co-design workshops involving expert stakeholders and older adults (N = 25) over a period of 6 months, involving practical activities including user personas and focus groups to understand the complexities of loneliness and identify possible solutions with VR. Based on our findings we focus our argument on two key factors in the conceptualization of loneliness: spaces, and activities which may take place within said spaces. We present our reconceptualization of VR as a tool for group activities instead of passive consumption of content and make suggestions to the community for reducing feelings of loneliness with VR.

Improving access to highly effective emergency contraception: an assessment of barriers and facilitators to integrating the levonorgestrel IUD as emergency contraception using two applications of the Consolidated Framework for Implementation Research.

Emergency contraception prevents unwanted pregnancy after sexual intercourse. New evidence has demonstrated that the levonorgestrel 52 mg IUD is a highly effective method of emergency contraception. However, translating this research finding into clinical practice faces existing barriers to IUD access, including costs and provider training, novel barriers of providing IUDs for emergency contraception at unscheduled appointments. The purpose of this study was to identify barriers and facilitators to the utilization of the levonorgestrel IUD as emergency contraception from client, provider, and health systems perspectives. We conducted English and Spanish-speaking focus groups (n=5) of both contraceptive users (n=22) and providers (n=13) to examine how the levonorgestrel IUD as EC was perceived and understood by these populations and to determine barriers and facilitators of utilization. We used findings from our focus groups to design a high-fidelity in-situ simulation scenario around EC that we pilot tested with clinical teams in three settings (a county health department, a community clinic, and a midwifery clinic), to further explore structural and health systems barriers to care. Simulation scenarios examined health system barriers to the provision of the levonorgestrel IUD as EC. We coded both focus groups and in-clinic simulations using the modified Consolidated Framework for Implementation Research (CFIR). We then applied our findings to the CFIR-Expert Recommendations for Implementing Change (ERIC) Barrier Busting Tool and mapped results to implement recommendations provided by participants. Ultimately, 9 constructs from the CFIR were consistently identified across focus groups and simulations. Main barriers included suboptimal knowledge and acceptability of the intervention itself, appropriately addressing knowledge and education needs among both providers and contraceptive clients, and adequately accounting for structural barriers inherent in the health system. The CFIR-ERIC Barrier Busting Tool identified eight strategies to improve levonorgestrel IUD as EC access: identifying implementation champions, conducting educational meetings, preparing educational toolkits, involving patients and their partners in implementation, conducting a local needs assessment, distributing educational materials, and obtaining patient feedback. To sustainably incorporate the levonorgestrel IUD as EC into clinical practice, education, health systems strengthening, and policy changes will be necessary.

The value of digital and physical library services in UK public libraries and why they are not interchangeable

This study reports on a series of focus groups of UK public library users to understand how the forced closure of UK libraries caused by the COVID pandemic and the increased use of replacement digital services affected their library use. We specifically focus on digital exclusion and whether this increased as the result of physical library services being inaccessible. We show that although digital exclusion did increase as the result of library closures, digital exclusion was not the best way to characterise our participants’ experiences and digital choices was a more suitable concept. We show how public library users adapted to library closures, how they coped with these closures, and how they intend to use library services in the future. Our participants reported different patterns of use of digital and physical library services, had different experiences of these two modes of library service, and described their value in different terms. We explore what they valued in physical and digital services and show how simple arguments that digital services can replace physical ones do not match the experiences or wishes of those who use these services.

Understanding How Baby Boomers Use the Internet and Social Media to Improve the Engagement with Brands

The emergence of the baby boomers, as a new group of people aged 55 to 75, with unique interests, media exposure and shopping habits, set a before and after in the language that brands must speak. The main objective of social media is to build engagement, and in the digital environment, it means engaging both seniors and companies. For this, learning how they act in the digital environment is key. This paper aims to show how baby boomers behave in this environment, showing the challenges and advantages brands have to reach them effectively. Based on an exploratory and qualitative study with focus groups of senior internet and social network users from Portugal and Spain, the results show that analysing their habits of exposure to these media and the interests, brands do not seem to speak the same language they do, and that is why baby boomers do not feel engaged with them online. This work provides recommendations to get this engagement and improve the digital experience. In this line, to build this engagement, brands need to understand the variables of interest for baby boomers stemming from this study: affiliation and support. On the other hand, they must assume that this level of engagement will depend on establishing an active dialogue, with content targeted at different segments of the population, related to the variables above (affiliation and support), and to a degree enough to reach baby boomers emotionally.

"How do you try to have anyone comply or at least be pliable with you if that person's not even medicated?": Perspectives on the use of psychiatric medication within recovery-oriented practice.

Objective: Medication is particularly important to advocates within the mental health recovery movement and this movement is founded upon a resistance to coercive treatment. Given this history, we explored the perspectives of providers and service users engaged in the recovery-oriented practice Person-Centered Care Planning (PCCP) to understand (a). How providers trained in PCCP understand the role of psychiatric medication and (b). How service users receiving services from providers trained in PCCP understand and experience the role of psychiatric medication in treatment. Method: This study comprises data from the qualitative phase of an NIMH-funded randomized trial of PCCP, an evidence-based recovery-oriented practice. Data were collected from 22 focus groups of providers and service users across seven community mental health centers. Interviews were analyzed using thematic analysis. Results: Qualitative themes from the provider focus groups included "promoting adherence" and "medication as a precondition." Providers expressed that service users need to be adherent to medication and their symptoms managed before recovery-oriented practices could be pursued. Service user themes included "we were cattle" and medication as "my saving grace." While many experienced medication as helpful, they found providers' focus on adherence to be inflexible and, at times, coercive. Conclusion and Implications for Practice: These results suggest that even within agencies actively implementing recovery-oriented practices, there are aspects of treatment, namely medication management, that are more impervious to recovery principles. Agency level trainings in PCCP and other recovery-oriented practices would benefit from the inclusion of all staff, including psychiatrists and other prescribers. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Virtual focus groups for improved A-Z list user experience

User focus groups can be a particularly effective way to design user-driven changes to library services. This paper explains how three faculty librarians designed and conducted virtual focus groups to improve the College of Charleston (CofC) Libraries' A-Z Database List; provides analysis of the data gathered via focus group sessions and a follow-up survey; details how this information has been used to make changes for the sake of student user experience (UX) and user interface (UI) design; and shares overall impressions and insights gained from the study. By inviting student participants to explore the list in a setting that was both structured and open-ended, librarians learned what mattered most to students using this resource.

The initial design and programme theory for a new work-focused psychotherapeutic intervention to treat moderate-severe recurrent depression and enhance job retention

Purpose Here, this study aims to report a case study of the initial design and programme theory of an interdisciplinary work-focused relational group cognitive behaviour therapy (CBT) treatment programme for moderate-severe depression using realist methods. Design/methodology/approach This case study shows how the authors designed the intervention using component analysis of existing literature and focus groups of frontline practitioners and former service users and mind-mapping analysis to establish its operational logic and evaluated the theory underpinning the intervention using realist synthesis and evaluation to establish its conceptual logic. Findings An iterative hybrid approach of literature review, component analysis, focus group discussion and realist methods established the initial design and programme theory for the new intervention. The intervention focused on three areas of therapy, three inter-dependent outcomes, in a group format, with opportunities created for peer interaction. The main theoretical principles most likely to promote efficacy were to accelerate and optimise activation of one or more of six hypothesised mechanisms: realise, reflect, regulate, resolve, relate and retain/resume in the context of skilfully facilitated group psychotherapy. Social implications This study outlines a methodological approach based on the layered ontology of critical realist philosophy, applied to a successful example, which will be useful during the early stages of the design and development of new group-based psychotherapeutic interventions. Originality/value By adopting the critical realist approach, the authors identified underlying mechanisms of change in relational group CBT. The theoretically integrated approach involving service users and practitioners from different professional backgrounds was unique and meant that the treatment programme was multi-modal rather than informed by a single therapeutic or theoretical approach.

An mHealth App for Fibromyalgia-like Post-COVID-19 Syndrome: Protocol for the Analysis of User Experience and Clinical Data.

BackgroundPost–COVID-19 syndrome, also referred as “long covid,” describes persisting symptoms after SARS-CoV-2 infection, including myalgia, fatigue, respiratory, or neurological symptoms. Objective symptoms are often lacking, thus resembling a fibromyalgia-like syndrome. Digital therapeutics have shown efficiency in similar chronic disorders such as fibromyalgia, offering specific disease monitoring and interventions such as cognitive behavioral therapy or physical and respiratory exercise guidance.ObjectiveThis protocol aims to study the requirements and features of a new mobile health (mHealth) app among patients with fibromyalgia-like post–COVID-19 syndrome in a clinical trial.MethodsWe created a web application prototype for the post–COVID-19 syndrome called “POCOS,” as a web-based rehabilitation tool aiming to improve clinical outcomes. Patients without organ damage or ongoing inflammation will be included in the study. App use will be assessed through user experience questionnaires, focus groups, and clinical data analysis. Subsequently, we will analyze cross-sectional and longitudinal clinical data.ResultsThe developed mHealth app consists of a clinically adapted app interface with a simplified patient-reported outcome assessment, monitoring of medical interventions, and disease activity as well as web-based instructions for specific physical and respiratory exercises, stress reduction, and lifestyle instructions. The enrollment of participants is expected to be carried out in November 2021.ConclusionsUser experience plays an important role in digital therapeutics and needs to be clinically tested to allow further improvement. We here describe this process for a new app for the treatment of the fibromyalgia-like post–COVID-19 syndrome and discuss the relevance of the potential outcomes such as natural disease course and disease phenotypes.International Registered Report Identifier (IRRID)PRR1-10.2196/32193