320 research outputs found

    Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study

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    [EN] Background: Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users¿ experiences with digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users¿ experiences can inform the design of approaches toward increased motivation for digital self-management. Objective: This study aimed to evaluate the self-management of cystic fibrosis (CF) with a focus on gastrointestinal concerns and the care of young patients. Following a user-centered design approach, we developed a self-management app for patients and parents and a web tool for health care professionals (HCPs). To evaluate the proposed solutions, a 6-month clinical trial was conducted in 6 European CF competence centers. This paper analyzes the user acceptance of the technology and the benefits and disadvantages perceived by the trial participants. Methods: A mixed methods approach was applied. Data were collected through 41 semistructured qualitative interviews of patients, parents, and HCPs involved in the clinical trial. In addition, data were collected through questionnaires embedded in the self-management app. Results: Support for enzyme dose calculation and nutrition management was found to be particularly useful. Patients and parents rapidly strengthened their knowledge about the treatment and increased their self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by HCPs in an introductory phase. HCPs valued obtaining precise information about the patients, allowing for more personalized advice. However, the tight follow-up of several patients led to an increased workload. Over time, as patient self-efficacy increased, patient motivation for using the app decreased and the quality of the reported data was reduced. Conclusions: Self-management enfolds a collaboration between patients and HCPs. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviors and experiences, this study defines recommendations for a complex case¿the demanding treatment of CF. We identify target patient groups and situations for which the app is most beneficial and suggest focusing on these rather than motivating for regular app usage over a long time. We also advise the personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance for HCPs to facilitate changes in practice. As personalization and technology literacy are factors found to influence the acceptance of digital self-management of other chronic diseases, it is relevant to consider the proposed recommendations beyond the case of CF.The authors of this paper, on behalf of the MyCyFAPP consortium, acknowledge the European Union and the Horizon 2020 Research and Innovation Framework Programme for funding the project (ref. 643806). The authors would like to thank all project partners for their collaboration during participant recruitment and project management. Without the dedication of participants in terms of time, effort, and valuable input, this publication would not have been possible. The authors would like to thank all the participants who contributed to this work.Floch, J.; Vilarinho, T.; Zettl, A.; Ibáñez Sánchez, G.; Calvo-Lerma, J.; Stav, E.; Halland Haro, P.... (2020). Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study. JMIR mHealth and uHealth. 8(7):1-19. https://doi.org/10.2196/15896S11987Webb, T. L., Joseph, J., Yardley, L., & Michie, S. (2010). Using the Internet to Promote Health Behavior Change: A Systematic Review and Meta-analysis of the Impact of Theoretical Basis, Use of Behavior Change Techniques, and Mode of Delivery on Efficacy. Journal of Medical Internet Research, 12(1), e4. doi:10.2196/jmir.1376Free, C., Phillips, G., Galli, L., Watson, L., Felix, L., Edwards, P., … Haines, A. (2013). The Effectiveness of Mobile-Health Technology-Based Health Behaviour Change or Disease Management Interventions for Health Care Consumers: A Systematic Review. PLoS Medicine, 10(1), e1001362. doi:10.1371/journal.pmed.1001362Marcolino, M. S., Oliveira, J. A. Q., D’Agostino, M., Ribeiro, A. L., Alkmim, M. B. M., & Novillo-Ortiz, D. (2018). The Impact of mHealth Interventions: Systematic Review of Systematic Reviews. JMIR mHealth and uHealth, 6(1), e23. doi:10.2196/mhealth.8873Venkatesh, Morris, Davis, & Davis. (2003). User Acceptance of Information Technology: Toward a Unified View. MIS Quarterly, 27(3), 425. doi:10.2307/30036540Cystic Fibrosis Europe2020-05-27https://www.cf-europe.eu/Conway, S., Balfour-Lynn, I. M., De Rijcke, K., Drevinek, P., Foweraker, J., Havermans, T., … Peckham, D. (2014). European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre. Journal of Cystic Fibrosis, 13, S3-S22. doi:10.1016/j.jcf.2014.03.009Floch, J., Zettl, A., Fricke, L., Weisser, T., Grut, L., Vilarinho, T., … Schauber, C. (2018). User Needs in the Development of a Health App Ecosystem for Self-Management of Cystic Fibrosis: User-Centered Development Approach. JMIR mHealth and uHealth, 6(5), e113. doi:10.2196/mhealth.8236Calvo-Lerma, J., Martinez-Jimenez, C. P., Lázaro-Ramos, J.-P., Andrés, A., Crespo-Escobar, P., Stav, E., … Ribes-Koninckx, C. (2017). Innovative approach for self-management and social welfare of children with cystic fibrosis in Europe: development, validation and implementation of an mHealth tool (MyCyFAPP). BMJ Open, 7(3), e014931. doi:10.1136/bmjopen-2016-014931Borowitz, D., Gelfond, D., Maguiness, K., Heubi, J. E., & Ramsey, B. (2013). Maximal daily dose of pancreatic enzyme replacement therapy in infants with cystic fibrosis: A reconsideration. Journal of Cystic Fibrosis, 12(6), 784-785. doi:10.1016/j.jcf.2013.05.011Calvo-Lerma, J., Fornés-Ferrer, V., Peinado, I., Heredia, A., Ribes-Koninckx, C., & Andrés, A. (2019). A first approach for an evidence-based in vitro digestion method to adjust pancreatic enzyme replacement therapy in cystic fibrosis. PLOS ONE, 14(2), e0212459. doi:10.1371/journal.pone.0212459Calvo-Lerma, J., Hulst, J., Boon, M., Martins, T., Ruperto, M., Colombo, C., … Ribes-Koninckx, C. (2019). The Relative Contribution of Food Groups to Macronutrient Intake in Children with Cystic Fibrosis: A European Multicenter Assessment. Journal of the Academy of Nutrition and Dietetics, 119(8), 1305-1319. doi:10.1016/j.jand.2019.01.003Turck, D., Braegger, C. P., Colombo, C., Declercq, D., Morton, A., Pancheva, R., … Wilschanski, M. (2016). ESPEN-ESPGHAN-ECFS guidelines on nutrition care for infants, children, and adults with cystic fibrosis. Clinical Nutrition, 35(3), 557-577. doi:10.1016/j.clnu.2016.03.004Vo, V., Auroy, L., & Sarradon-Eck, A. (2019). Patients’ Perceptions of mHealth Apps: Meta-Ethnographic Review of Qualitative Studies. JMIR mHealth and uHealth, 7(7), e13817. doi:10.2196/13817Anderson, K., Burford, O., & Emmerton, L. (2016). Mobile Health Apps to Facilitate Self-Care: A Qualitative Study of User Experiences. PLOS ONE, 11(5), e0156164. doi:10.1371/journal.pone.0156164Boon, M., Calvo-Lerma, J., Claes, I., Havermans, T., Asseiceira, I., Bulfamante, A., … Ribes-Koninckx, C. (2020). Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis. Journal of Cystic Fibrosis, 19(4), 562-568. doi:10.1016/j.jcf.2020.04.001Hevner, March, Park, & Ram. (2004). Design Science in Information Systems Research. MIS Quarterly, 28(1), 75. doi:10.2307/25148625-ISO 9241-210:2010 Ergonomics of Human-System Interaction — Part 210: Human-Centred Design for Interactive SystemsInternational Organization for Standardization20102020-06-05https://www.iso.org/standard/52075.htmlVilarinho, T., Floch, J., & Stav, E. (2017). Co-designing a mHealth Application for Self-management of Cystic Fibrosis. Lecture Notes in Computer Science, 3-22. doi:10.1007/978-3-319-67687-6_1Kristensen, G. K., & Ravn, M. N. (2015). The voices heard and the voices silenced: recruitment processes in qualitative interview studies. Qualitative Research, 15(6), 722-737. doi:10.1177/1468794114567496Etikan, I. (2016). Comparison of Convenience Sampling and Purposive Sampling. American Journal of Theoretical and Applied Statistics, 5(1), 1. doi:10.11648/j.ajtas.20160501.11Bryman, A. (2006). Integrating quantitative and qualitative research: how is it done? Qualitative Research, 6(1), 97-113. doi:10.1177/1468794106058877Klein, H. K., & Myers, M. D. (1999). A Set of Principles for Conducting and Evaluating Interpretive Field Studies in Information Systems. MIS Quarterly, 23(1), 67. doi:10.2307/249410Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. doi:10.1191/1478088706qp063oaLee, Y., Kozar, K. A., & Larsen, K. R. T. (2003). The Technology Acceptance Model: Past, Present, and Future. Communications of the Association for Information Systems, 12. doi:10.17705/1cais.01250Calvo-Lerma, J., Hulst, J. M., Asseiceira, I., Claes, I., Garriga, M., Colombo, C., … Ribes-Koninckx, C. (2017). Nutritional status, nutrient intake and use of enzyme supplements in paediatric patients with Cystic Fibrosis; a European multicentre study with reference to current guidelines. Journal of Cystic Fibrosis, 16(4), 510-518. doi:10.1016/j.jcf.2017.03.005Johnson, K. B., Patterson, B. L., Ho, Y.-X., Chen, Q., Nian, H., Davison, C. L., … Mulvaney, S. A. (2015). The feasibility of text reminders to improve medication adherence in adolescents with asthma. Journal of the American Medical Informatics Association, 23(3), 449-455. doi:10.1093/jamia/ocv158Granger, D., Vandelanotte, C., Duncan, M. J., Alley, S., Schoeppe, S., Short, C., & Rebar, A. (2016). Is preference for mHealth intervention delivery platform associated with delivery platform familiarity? BMC Public Health, 16(1). doi:10.1186/s12889-016-3316-2Cook, K. A., Modena, B. D., & Simon, R. A. (2016). Improvement in Asthma Control Using a Minimally Burdensome and Proactive Smartphone Application. The Journal of Allergy and Clinical Immunology: In Practice, 4(4), 730-737.e1. doi:10.1016/j.jaip.2016.03.005Cafazzo, J. A., Casselman, M., Hamming, N., Katzman, D. K., & Palmert, M. R. (2012). Design of an mHealth App for the Self-management of Adolescent Type 1 Diabetes: A Pilot Study. Journal of Medical Internet Research, 14(3), e70. doi:10.2196/jmir.2058Riis, A., Hjelmager, D. M., Vinther, L. D., Rathleff, M. S., Hartvigsen, J., & Jensen, M. B. (2018). Preferences for Web-Based Information Material for Low Back Pain: Qualitative Interview Study on People Consulting a General Practitioner. JMIR Rehabilitation and Assistive Technologies, 5(1), e7. doi:10.2196/rehab.8841Goetz, M., Müller, M., Matthies, L. M., Hansen, J., Doster, A., Szabo, A., … Wallwiener, S. (2017). Perceptions of Patient Engagement Applications During Pregnancy: A Qualitative Assessment of the Patient’s Perspective. JMIR mHealth and uHealth, 5(5), e73. doi:10.2196/mhealth.7040Giunti, G., Kool, J., Rivera Romero, O., & Dorronzoro Zubiete, E. (2018). Exploring the Specific Needs of Persons with Multiple Sclerosis for mHealth Solutions for Physical Activity: Mixed-Methods Study. JMIR mHealth and uHealth, 6(2), e37. doi:10.2196/mhealth.8996Aujoulat, I., d’ Hoore, W., & Deccache, A. (2007). Patient empowerment in theory and practice: Polysemy or cacophony? Patient Education and Counseling, 66(1), 13-20. doi:10.1016/j.pec.2006.09.008Waite-Jones, J. M., Majeed-Ariss, R., Smith, J., Stones, S. R., Van Rooyen, V., & Swallow, V. (2018). Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study. JMIR mHealth and uHealth, 6(1), e25. doi:10.2196/mhealth.9179Lubberding, S., van Uden-Kraan, C. F., Te Velde, E. A., Cuijpers, P., Leemans, C. R., & Verdonck-de Leeuw, I. M. (2015). Improving access to supportive cancer care through an eHealth application: a qualitative needs assessment among cancer survivors. Journal of Clinical Nursing, 24(9-10), 1367-1379. doi:10.1111/jocn.12753Simons, L., Valentine, A. Z., Falconer, C. J., Groom, M., Daley, D., Craven, M. P., … Hollis, C. (2016). Developing mHealth Remote Monitoring Technology for Attention Deficit Hyperactivity Disorder: A Qualitative Study Eliciting User Priorities and Needs. JMIR mHealth and uHealth, 4(1), e31. doi:10.2196/mhealth.5009Velu, A. V., van Beukering, M. D., Schaafsma, F. G., Frings-Dresen, M. H., Mol, B. W., van der Post, J. A., & Kok, M. (2017). Barriers and Facilitators for the Use of a Medical Mobile App to Prevent Work-Related Risks in Pregnancy: A Qualitative Analysis. JMIR Research Protocols, 6(8), e163. doi:10.2196/resprot.7224Switsers, L., Dauwe, A., Vanhoudt, A., Van Dyck, H., Lombaerts, K., & Oldenburg, J. (2018). Users’ Perspectives on mHealth Self-Management of Bipolar Disorder: Qualitative Focus Group Study. JMIR mHealth and uHealth, 6(5), e108. doi:10.2196/mhealth.9529Al Dahdah, M. (2017). Health at her fingertips: development, gender and empowering mobile technologies. Gender, Technology and Development, 21(1-2), 135-151. doi:10.1080/09718524.2017.1385701Consolvo, S. (2012). Designing for Healthy Lifestyles: Design Considerations for Mobile Technologies to Encourage Consumer Health and Wellness. Foundations and Trends® in Human–Computer Interaction, 6(3–4), 167-315. doi:10.1561/110000004

    Cystic Fibrosis

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    Cystic Fibrosis - Heterogeneity and Personalized Treatment provides the latest research and clinical evidence for clinicians, scientists and researchers involved in the care of patients with cystic fibrosis (CF). This book outlines the burden of the CF microbiome, utilisation of CF registries to impact future care, the sequelae of hepatobiliary complication, the use of upcoming technologies to provide patient-centred care, and provides an overview of cystic fibrosis transmembrane regulator (CFTR) modulators. Looking after patients with CF is highly rewarding, allowing those of us to combine our dedication and problem-solving skills to create a personalized approach. This book is invaluable for those involved in the care of CF patients

    Lessons learnt from MyCyFAPP Project: Effect of cystic fibrosis factors and inherent-to-food properties on lipid digestion in foods

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    [EN] Unveiling mechanisms underpinning nutrient digestion has raised interest in the field of medical sciences for their potential application in clinical treatments. In the case of Cystic Fibrosis (CF), there exists an urgent need for understanding food lipid digestion to establish a criterion to adjust the dose of pancreatic enzyme supplements; patients have to take the supplements to allow digestion, given the associated exocrine pancreatic insufficiency (EPI). The aim of MyCyFAPP Project was to establish an evidence-based method to adjust pancreatic enzyme replacement therapy. To solve this challenge, the still unexplored field of real foods digestion had to be addressed. This review paper provides a description of the static in vitro digestion model that simulated different EPI intestinal conditions to conduct an extensive experimental work with 52 foods. Then, a summary of the data modelling that allowed for establishing a dosing criterion for enzyme supplements is provided. Following, by means of examples, an overview of the main findings related to the new knowledge generated in the field of lipid digestion in real foods is discussed, including the role of the inherent-to-food and the host factors affecting lipolysis. Finally, a discussion about the translation of the generated results in the lab to the clinical treatment of CF concludes with the lessons learnt from conducting this studyAuthors acknowledge the work and effort of the colleagues integrating MyCyFAPP Consortium for bringing knowledge and wisdom to this project. Especially, to those researchers significantly contributing to the field of in vitro digestion studies: Carolina Paz-Yepez, Victoria Fornes-Ferrer, Virginia Larrea, Irene Peinado, and Carmen Ribes-Koninckx. We acknowledge the Horizon 2020 Research and Innovation Framework Programme of the European Union for funding this project.Calvo-Lerma, J.; Asensio-Grau, A.; Heredia Gutiérrez, AB.; Andrés Grau, AM. (2020). Lessons learnt from MyCyFAPP Project: Effect of cystic fibrosis factors and inherent-to-food properties on lipid digestion in foods. Food Research International. 133:1-10. https://doi.org/10.1016/j.foodres.2020.109198S11013

    Web Portals for Patients With Chronic Diseases:Scoping Review of the Functional Features and Theoretical Frameworks of Telerehabilitation Platforms

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    BACKGROUND: The COVID-19 pandemic has required an increased need for rehabilitation activities applicable to patients with chronic diseases. Telerehabilitation has several advantages, including reducing clinic visits by patients vulnerable to infectious diseases. Digital platforms are often used to assist rehabilitation services for patients in remote settings. Although web portals for medical use have existed for years, the technology in telerehabilitation remains a novel method. OBJECTIVE: This scoping review investigated the functional features and theoretical approaches of web portals developed for telerehabilitation in patients with chronic diseases. METHODS: PubMed and Web of Science were reviewed to identify articles associated with telerehabilitation. Of the 477 nonduplicate articles reviewed, 35 involving 14 portals were retrieved for the scoping review. The functional features, targeted diseases, and theoretical approaches of these portals were studied. RESULTS: The 14 portals targeted patients with chronic obstructive pulmonary disease, cardiovascular, osteoarthritis, multiple sclerosis, cystic fibrosis diseases, and stroke and breast cancer survivors. Monitoring/data tracking and communication functions were the most common, followed by exercise instructions and diary/self-report features. Several theoretical approaches, behavior change techniques, and motivational techniques were found to be utilized. CONCLUSIONS: The web portals could unify and display multiple types of data and effectively provide various types of information. Asynchronous correspondence was more favorable than synchronous, real-time interactions. Data acquisition often required assistance from other digital tools. Various functions with patient-centered principles, behavior change strategies, and motivational techniques were observed for better support shifting to a healthier lifestyle. These findings suggested that web portals for telerehabilitation not only provided entrance into rehabilitation programs but also reinforced participant-centered treatment, adherence to rehabilitation, and lifestyle changes over time

    Virtual reality, gamification, and mobile multimedia for cystic fibrosis education and management

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    Cystic Fibrosis (CF) is a rare condition and is the most common life-limiting genetic disease affecting Caucasians; and Ireland has the highest occurrence of this condition in the world. As CF is a rare disease, common conditions and diseases such as asthma, diabetes, and heart disease are given precedence by researchers and practitioners who design and implement multimedia solutions. As life expectancy for CF patients is expected to rise, it is postulated that the development of multimedia interventions may aid CF adults in the management of their disease. This research, therefore, aims to investigate if and how the use of multimedia can be of benefit to Cystic Fibrosis knowledge and education. To achieve this, a systematic scoping literature review was conducted which yielded 12 manuscripts. From these papers it was observed that there is paucity in available multimedia for medical professionals, games for CF adults, and management applications for CF adults. These three observations serve as the objectives of each Chapter within the thesis. Each Chapter begins by investigating the observation further before designing and implementing a multimedia solution. The results of this research produced a 3D interactive virtual reality tool for medical professionals, a general mHealth design and development pipeline/framework, a serious game with data analysis system for CF adults, three e-learning tools for CF adults, and a CF patient passport app. All multimedia solutions were evaluated with their target audience, and each result is presented. This research concludes that multimedia can be of benefit to the education and management of Cystic Fibrosis. Feedback from testing with both medical professionals and CF adults demonstrates that these cohorts indeed want these multimedia solutions and find them beneficial. However, further investigation and research is required to evaluate the benefits these solutions have. Therefore this thesis also identifies further areas of interest and makes recommendations for future research

    Feasibility study for supporting medication adherence for adults with cystic fibrosis: mixed-methods process evaluation

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    Objectives: To undertake a process evaluation of an adherence support intervention for people with cystic fibrosis (PWCF), to assess its feasibility and acceptability. Setting: Two UK cystic fibrosis (CF) units. Participants: Fourteen adult PWCF; three professionals delivering adherence support (‘interventionists’); five multi-disciplinary CF team members. Interventions: Nebuliser with data recording and transfer capability, linked to a software platform, and strategies to support adherence to nebulised treatments facilitated by interventionists over 5 months (± 1 month). Primary and secondary measures: Feasibility and acceptability of the intervention, assessed through semistructured interviews, questionnaires, fidelity assessments and click analytics. Results: Interventionists were complimentary about the intervention and training. Key barriers to intervention feasibility and acceptability were identified. Interventionists had difficulty finding clinic space and time in normal working hours to conduct review visits. As a result, fewer than expected intervention visits were conducted and interviews indicated this may explain low adherence in some intervention arm participants. Adherence levels appeared to be >100% for some patients, due to inaccurate prescription data, particularly in patients with complex treatment regimens. Flatlines in adherence data at the start of the study were linked to device connectivity problems. Content and delivery quality fidelity were 100% and 60%–92%, respectively, indicating that interventionists needed to focus more on intervention ‘active ingredients’ during sessions. Conclusions: The process evaluation led to 14 key changes to intervention procedures to overcome barriers to intervention success. With the identified changes, it is feasible and acceptable to support medication adherence with this intervention. Trial registration number: ISRCTN13076797; Results

    Med-e-Tel 2013

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    Toward Integration of mHealth in Primary Care in the Netherlands: A Qualitative Analysis of Stakeholder Perspectives

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    Background: There is a growing need to structurally change the way chronic illness care is organized as health systems struggle to meet the demand for chronic care. mHealth technologies can alter traditional approaches to health care provision by stimulating self-management of chronically ill patients. The aim of this study was to understand the complex environment related to the introduction of mHealth solutions into primary care for chronic disease management while considering health system functioning and stakeholder views. Methods: A transdisciplinary approach was used informed by the Interactive Learning and Action (ILA) methodology. Exploratory interviews (n = 5) were held with representatives of stakeholder groups to identify and position key stakeholders. Subsequently, professionals and chronically ill patients were consulted separately to elaborate on the barriers and facilitators in integration, using semi-structured interviews (n = 17) and a focus group (n = 6). Follow-up interviews (n = 5) were conducted to discuss initial findings of the stakeholder analysis. Results: Most stakeholders, in particular primary care practitioners and patients, seem to have a supporting or mixed attitude toward integration of mHealth. On the other hand, several powerful stakeholders, including primary care information system developers and medical specialists are likely to show resistance or a lack of initiative toward mHealth integration. Main barriers to mHealth integration were a lack of interoperability with existing information systems; difficulties in financing mHealth implementation; and limited readiness in general practices to change. Potential enablers of integration included co-design of mHealth solutions and incentives for pioneers. Conclusion: Stakeholders acknowledge the benefits of integrating mHealth in primary care. However, important barriers perceived by end-users prevent them to fully adopt and use mHealth. This study shows that the complexity of introducing mHealth into primary care calls for strategies encouraging collaboration between multiple stakeholders to enhance successful implementation
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