Long COVID; digital health app; mixed methods; remote symptom monitoring; vocal biomarkers; Health Policy; Health Informatics; Computer Science Applications; Health Information Management
Abstract :
[en] [en] BACKGROUND: People living with Long COVID (PWLC), which is still a poorly understood disease, often face major issues accessing proper care and frequently feel abandoned by the healthcare system. PWLC frequently report impaired quality of life because of the medical burden, the variability and intensity of symptoms, and insecurity toward the future. These particular needs justify the development of innovative, minimally disruptive solutions to facilitate the monitoring of this complex and fluctuating disease. Voice-based interactions and vocal biomarkers are promising digital approaches for such health monitoring.
METHODS: Based on a mixed-method approach, this study describes the entire co-design process of Long COVID Companion, a voice-based digital health app to monitor Long COVID symptoms. Potential end-users of the app, both PWLC and healthcare professionals (HCP) were involved to (1) understand the unmet needs and expectations related to Long COVID care and management, (2) to assess the barriers and facilitators regarding a health monitoring app, (3) to define the app characteristics, including future potential use of vocal biomarkers and (4) to develop a first version of the app.
RESULTS: This study revealed high needs and expectations regarding a digital health app to monitor Long COVID symptoms and the readiness to use vocal biomarkers from end-users. The main expectations included improved care and daily life, and major concerns were linked to accessibility and data privacy. Long COVID Companion was developed as a web application and is composed of a health monitoring component that allows auto-evaluation of symptoms, global health, and scoring relevant symptoms and quality of life using standardized questionnaires.
CONCLUSIONS: The Long COVID Companion app will address a major gap and provide day-to-day support for PWLC. However, further studies will be needed following its release, to evaluate its acceptability, usability and effectiveness.
Disciplines :
Life sciences: Multidisciplinary, general & others
Author, co-author :
Fischer, Aurélie ; Deep Digital Phenotyping Research Unit, Department of Precision Health, Luxembourg Institute of Health, Strassen, Luxembourg ; Ecole doctorale BIOSE, Université de Lorraine, Nancy, France
Aguayo, Gloria ; Deep Digital Phenotyping Research Unit, Department of Precision Health, Luxembourg Institute of Health, Strassen, Luxembourg
Pinker, India; ACADI, Department of Precision Health, Luxembourg Institute of Health, Strassen, Luxembourg
Oustric, Pauline ; Association #ApresJ20 Covid Long France, Lucé, France
Lachaise, Tom; Association #ApresJ20 Covid Long France, Lucé, France
WILMES, Paul ; University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB) > Systems Ecology
Larché, Jérôme; Long Covid Center, Clinique du Parc, Castelnau-le-Lez, France
Benoy, Charles; Centre Hospitalier Neuro-Psychiatrique Luxembourg (CHNP), Ettelbruck, Luxembourg ; University Psychiatric Clinics (UPK), University of Basel, Basel, Switzerland
FAGHERAZZI, Guy ; University of Luxembourg ; Deep Digital Phenotyping Research Unit, Department of Precision Health, Luxembourg Institute of Health, Strassen, Luxembourg
External co-authors :
yes
Language :
English
Title :
Co-design of a voice-based app to monitor long COVID symptoms with its end-users: A mixed-method study.
FNR16954531 - CoVaLux - Covid-19, Vaccination And Longer-term Health Consequences Of Covid-19 In Luxembourg, 2021 (01/12/2021-30/11/2024) - Paul Wilmes
Funders :
Fonds National de la Recherche Luxembourg
Funding text :
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Luxembourg Government through the CoVaLux programme and funded by the Luxembourg National Research Fund, grant number 16954531.
Zhang H Huang C Gu X, et al. 3-year outcomes of discharged survivors of COVID-19 following the SARS-CoV-2 omicron (B.1.1.529) wave in 2022 in China: a longitudinal cohort study. Lancet Respir Med 2024; 12: 55–66.
Ballering AV van Zon SKR Olde Hartman TC, et al. Persistence of somatic symptoms after COVID-19 in The Netherlands: an observational cohort study. Lancet 2022; 400: 452–461.
Davis HE McCorkell L Vogel JM, et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 2023; 21: 133–146.
A clinical case definition of post COVID-19 condition by a Delphi consensus. World Health Organization, https://www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1 (2021, accessed 15 July 2022).
Rubin R. As their numbers grow, COVID-19 “long Haulers” stump experts. JAMA 2020; 324: 1381–1383.
Fischer A Zhang L Elbéji A, et al. Long COVID symptomatology after 12 months and its impact on quality of life according to initial coronavirus disease 2019 disease severity. Open Forum Infect Dis 2022; 9: ofac397.
Science Evidence Advice. The social cost of a COVID-19 infection October 2022, https://www.gov.wales/sites/default/files/publications/2023-07/science-evidence-advice-the-social-cost-of-a-covid-infection-october-2022.pdf (2023, accessed 21 March 2024).
Salmon D Slama D Linard F, et al. Patients with long COVID continue to experience significant symptoms at 12 months and factors associated with improvement: a prospective cohort study in France (PERSICOR). Int J Infect Dis 2024; 140: 9–16.
Hung P Brehon K Miciak M, et al. “I had to know about it, I had to find it, I had to know how to access it”: experiences of access to rehabilitation services among people living with long COVID. Physiother Can 2024; 76: 8–24.
Adams N MacIver E Grant A, et al. OP32 Constrained Candidacy: Exploring different barriers to attaining healthcare access and treatment for long COVID illness by NHS workers in Scotland. In: SSM Annual Scientific Meeting. BMJ Publishing Group Ltd., 2023. doi: https://doi.org/10.1136/jech-2023-ssmabstracts.32
Brehon K Miciak M Hung P, et al. “None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with long COVID. BMC Health Serv Res 2023; 23: 1396.
Gheorghita R Soldanescu I Lobiuc A, et al. The knowns and unknowns of long COVID-19: from mechanisms to therapeutical approaches. Front Immunol 2024; 15: 1344086.
World Physiotherapy. World Physiotherapy Response to COVID-19 Briefing Paper 9. Safe rehabilitation approaches for people living with Long COVID: physical activity and exercise, https://world.physio/sites/default/files/2021-07/Briefing-Paper-9-Long-Covid-FINAL-English-2021_0.pdf (2021, accessed 3 November 2023).
Shah W Hillman T Playford ED, et al. Managing the long term effects of COVID-19: summary of NICE, SIGN, and RCGP rapid guideline. Br Med J 2021; 372: n136.
Kumah-Crystal YA Pirtle CJ Whyte HM, et al. Electronic health record interactions through voice: a review. Appl Clin Inform 2018; 9: 541–552.
Bérubé C Schachner T Keller R, et al. Voice-based conversational agents for the prevention and management of chronic and mental health conditions: systematic literature review. J Med Internet Res 2021; 23: e25933.
Nayak A Vakili S Nayak K, et al. Use of voice-based conversational artificial intelligence for basal insulin prescription management among patients with type 2 diabetes: a randomized clinical trial. JAMA Netw Open 2023; 6: e2340232.
Fagherazzi G Fischer A Ismael M, et al. Voice for health: the use of vocal biomarkers from research to clinical practice. Digit Biomark 2021; 5: 78–88.
Utilizing speech analysis to differentiate progressive supranuclear palsy from Parkinson’s disease. Parkinsonism Relat Disord. 2023;115: 105835.
Home. Real time voice analyzer, https://realtimevoiceanalyzer.com/ (2023, accessed 3 June 2024).
Larsen E Murton O Song X, et al. Validating the efficacy and value proposition of mental fitness vocal biomarkers in a psychiatric population: prospective cohort study. Front Psychiatry 2024; 15: 1342835.
Vocal biomarkers for mental fitness scoring and tracking. In: Sonde Health [Internet], https://www.sondehealth.com/vocal-biomarkers-for-mental-fitness-scoring-and-tracking (2023, accessed 3 June 2024).
Fagherazzi G Fischer A Betsou F, et al. Protocol for a prospective, longitudinal cohort of people with COVID-19 and their household members to study factors associated with disease severity: the predi-COVID study. BMJ Open 2020; 10: e041834.
Elbéji A Zhang L Higa E, et al. Vocal biomarker predicts fatigue in people with COVID-19: results from the prospective predi-COVID cohort study. BMJ Open 2022; 12: e062463.
Higa E Elbéji A Zhang L, et al. Discovery and analytical validation of a vocal biomarker to monitor anosmia and ageusia in patients with COVID-19: cross-sectional study. JMIR Med Inform 2022; 10: e35622.
Fagherazzi G Zhang L Elbéji A, et al. A voice-based biomarker for monitoring symptom resolution in adults with COVID-19: findings from the prospective predi-COVID cohort study. PLOS Digit Health 2022; 1: e0000112.
Visible—activity tracking for long Covid and ME/CFS, https://www.makevisible.com/ (accessed 18 October 2023).
Covid Recovery—Living With. In: Living With—Smart condition management and medical health apps, https://livingwith.health/covid-recovery/ (2022, accessed 18 October 2023).
Fareed N Swoboda C Singh P, et al. Developing and testing an integrated patient mHealth and provider dashboard application system for type 2 diabetes management among Medicaid-enrolled pregnant individuals based on a user-centered approach: mixed-methods study. Digit Health 2023; 9: 20552076221144181.
Lazarevic N Pizzuti C Rosic G, et al. A mixed-methods study exploring women’s perceptions and recommendations for a pregnancy app with monitoring tools. NPJ Digit Med 2023; 6: 50.
Adu MD Malabu UH Malau-Aduli AEO, et al. Users’ preferences and design recommendations to promote engagements with mobile apps for diabetes self-management: multi-national perspectives. PLoS One 2018; 13: e0208942.
Søholm U Broadley M Zaremba N, et al. Investigating the day-to-day impact of hypoglycaemia in adults with type 1 or type 2 diabetes: design and validation protocol of the hypo-METRICS application. BMJ Open 2022; 12: e051651.
Slattery P Saeri AK Bragge P. Research co-design in health: a rapid overview of reviews. Health Res Policy Syst 2020; 18: 1–13.
Aguayo GA Goetzinger C Scibilia R, et al. Methods to generate innovative research ideas and improve patient and public involvement in modern epidemiological research: review, patient viewpoint, and guidelines for implementation of a digital cohort study. J Med Internet Res 2021; 23: e25743.
Apresj20: Association Covid Long France, https://www.apresj20.fr (accessed 10 March 2024).
Fischer A Badier N Zhang L, et al. Long COVID Classification: Findings from a clustering analysis in the Predi-COVID Cohort Study. Int J Environ Res Public Health 2022; 19: 16018.
Fischer A Aguayo GA Oustric P, et al. Co-design of a voice-based digital health solution to monitor persisting symptoms related to COVID-19 (UpcomingVoice study): protocol for a mixed methods study. JMIR Res Protoc 2023; 12: e46103.
Stoyanov SR Hides L Kavanagh DJ, et al. Development and validation of the user version of the mobile application rating scale (uMARS). JMIR Mhealth Uhealth 2016; 4: e72.
Hajesmaeel-Gohari S Khordastan F Fatehi F, et al. The most used questionnaires for evaluating satisfaction, usability, acceptance, and quality outcomes of mobile health. BMC Med Inform Decis Mak 2022; 22: 22.
Harris PA Taylor R Minor BL, et al. The REDCap consortium: building an international community of software platform partners. J Biomed Inform 2019; 95: 103208.
MCDSARE: 2020 International Multidisciplinary Scientific Conference on the Dialogue between Sciences & Arts, Religion & Education, https://www.ifiasa.com/_files/ugd/378e6f_009a90538b664a35b2314bb4f91e6d99.pdf (2020, accessed 3 March 2024).
Saunders B Sim J Kingstone T, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant 2018; 52: 1893–1907.
Hennink M Kaiser BN. Sample sizes for saturation in qualitative research: a systematic review of empirical tests. Soc Sci Med 2022; 292: 114523.
MCDSARE: 2020 International Multidisciplinary Scientific Conference on the Dialogue between Sciences & Arts, Religion & Education, https://www.ifiasa.com/_files/ugd/378e6f_009a90538b664a35b2314bb4f91e6d99.pdf (2020, accessed 3 March 2024).
R Core Team. R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria, 2020. https://www.R-project.org/
Creswell JW Plano Clark VL. Designing and Conducting Mixed Methods Research. Los Angeles, California, USA: Sage Publications, 2017.
Skamagki G King A Carpenter C, et al. The concept of integration in mixed methods research: a step-by-step guide using an example study in physiotherapy. Physiother Theory Pract 2024; 40: 197–204.
Aguirre Vergara F Fischer A Seuring T, et al. Mixed-methods study protocol to identify expectations of people with type 1 diabetes and their caregivers about voice-based digital health solutions to support the management of diabetes distress: the PsyVoice study. BMJ Open 2023; 13: e068264.
Fischer A Elbeji A Aguayo G, et al. Recommendations for successful implementation of the use of vocal biomarkers for remote monitoring of COVID-19 and long COVID in clinical practice and research. Interact J Med Res 2022; 11: e40655.
Choi BCK Pak AWP. A catalog of biases in questionnaires. Prev Chronic Dis 2005; 2: A13.
Grosjean S Ciocca J-L Gauthier-Beaupré A, et al. Co-designing a digital companion with people living with Parkinson’s to support self-care in a personalized way: the eCARE-PD study. Digit Health 2022; 8: 20552076221081695.
Six SG Byrne KA Aly H, et al. The effect of mental health app customization on depressive symptoms in college students: randomized controlled trial. JMIR Ment Health 2022; 9: e39516.
Adams JR Ray D Willmon R, et al. Living with neuroendocrine tumors: assessment of quality of life through a Mobile application. JCO Clin Cancer Inform 2019; 3: 1–10.
Evald L Graarup J Højskov IE. Diary for self-observation: a self-management tool for recipients of lung transplantation-A pilot study. Nurs Open 2020; 7: 1766–1773.
Coghlan D Brydon-Miller M. The SAGE encyclopedia of action research. Thousand Oaks, California: Sage Publications Ltd, 2014. doi: https://doi.org/10.4135/9781446294406
Schellekens MPJ Wolvers MDJ Schroevers MJ, et al. Exploring the interconnectedness of fatigue, depression, anxiety and potential risk and protective factors in cancer patients: a network approach. J Behav Med 2020; 43: 553–563.
Goërtz YMJ Braamse AMJ Spruit MA, et al. Fatigue in patients with chronic disease: results from the population-based lifelines cohort study. Sci Rep 2021; 11: 20977.
Minton O Berger A Barsevick A, et al. Cancer-related fatigue and its impact on functioning. Cancer 2013; 119: 2124–2130.
Skinner TC Joensen L Parkin T. Twenty-five years of diabetes distress research. Diabet Med 2020; 37: 393–400.
The European Union Medical Device Regulation, https://eumdr.com/ (2021, accessed 1 March 2024).
Meskó B deBronkart D. Patient design: the importance of including patients in designing health care. J Med Internet Res 2022; 24: e39178.
Sherman KA Pehlivan MJ Singleton A, et al. Co-design and development of EndoSMS, a supportive text message intervention for individuals living with endometriosis: mixed methods study. JMIR Form Res 2022; 6: e40837.
Becker R. Gender and survey participation an event history analysis of the gender effects of survey participation in a probability-based multi-wave panel study with a sequential mixed-mode design. 2017. doi: https://doi.org/10.12758/MDA.2021.08
