The feasibility and usability of a personal health record for patients with multiple sclerosis: a 2-year evaluation study.

Background: Multiple sclerosis (MS) is a persistent inflammatory condition impacting the brain and spinal cord, affecting globally approximately 2.8 million individuals. Effective self-management plays a crucial role in the treatment of chronic diseases, including MS, significantly influencing health outcomes. A personal health record (PHR) is a promising tool to support self-management, potentially empowering patients and enhancing their engagement in treatment and health. Despite these promising aspects, challenges in implementation persist and PHRs are still a relatively new concept undergoing rapid development. Objective: This study aimed to assess the feasibility and usability of the PHR. Secondary objectives included evaluating implementation determinants, and exploring preliminary effects on quality of care for both patients and healthcare professionals (HCPs), self-management, self-efficacy for patients, job satisfaction, efficiency, and demand for HCPs, and preliminary effects on costs and health-related quality of life. Methods: This study had a mixed-methods design. Quantitative data of patients (n = 80) and HCPs (n = 12) were collected via self-reported questionnaires at baseline (T0), after one year (T1), and after two years (T2). One focus group interview was conducted at T2 with patients (n = 7), and another one with HCPs (n = 4), to get a more in-depth understanding of the feasibility and usability of the PHR via the Unified Theory of Acceptance and Use of Technology framework, and to further explore the secondary objectives in-depth. Results: Most patients never logged in during the first year and logged in a couple of times per year during the second year, averaging around 15 min per log-in session. The HCPs mainly logged in a couple of times per year over the two years with an average use of six minutes per session. Patient usability and satisfaction scores were below average and moderate, respectively: with SUS-scores of 59.9 (SD = 14.2, n = 33) at T1 and 59.0 (SD = 16.3, n = 37) at T2, and CSQ-8 scores of 21.4 (SD = 5.0, n = 34) at T1, and 22.1 (SD = 5.0, n = 39) at T2. HCPs had similar usability and satisfaction scores. Multiple facilitators and barriers were identified by both patients and HCPs, such as (in)sufficient knowledge of how to use the PHR, lack of staff capacity and ICT obstacles. No significant differences were found in the preliminary effects. Qualitative data showed, among others, that both patients and HCPs saw the benefit of the PHR in terms of performance expectancy, by gaining more insight into health and health data, but challenges remained regarding effort expectancy, such as log-in issues and experiencing difficulties with information retrieval. Conclusion: The feasibility and usability were considered moderate by patients and HCPs; however, potential regarding the performance of the PHR was observed. Implementation challenges, such as the complexity of usage, lowered the adoption of the PHR. The evolving nature of PHRs requires ongoing evaluation and adaptation to optimize their potential benefits. Utilizing a participatory design approach and a dedicated implementation team could help in achieving this optimization, ultimately enhancing their adoption.

The Asthma App as a New Way to Promote Responsible Short-Acting Beta2-Agonist Use in People With Asthma: Results of a Mixed Methods Pilot Study.

BACKGROUND: Approximately 262 million people worldwide are affected by asthma, and the overuse of reliever medication-specifically, short-acting beta2-agonist (SABA) overuse-is common. This can lead to adverse health effects. A smartphone app, the Asthma app, was developed via a participatory design to help patients gain more insight into their SABA use through monitoring and psychoeducation. OBJECTIVE: This pilot study aims to evaluate the feasibility and usability of the app. The preliminary effects of using the app after 3 months on decreasing asthma symptoms and improving quality of life were examined. METHODS: A mixed methods study design was used. Quantitative data were collected using the app. Asthma symptoms (measured using the Control of Allergic Rhinitis and Asthma Test) and the triggers of these symptoms were collected weekly. Quality of life (36-Item Short-Form Health Survey) was assessed at baseline and after 3, 6, and 12 months. User experience (System Usability Scale) was measured at all time points, except for baseline. Furthermore, objective user data were collected, and qualitative interviews, focusing on feasibility and usability, were organized. The interview protocol was based on the Unified Theory of Acceptance and Use of Technology framework. Qualitative data were analyzed using the Framework Method. RESULTS: The baseline questionnaire was completed by 373 participants. The majority were female (309/373, 82.8%), with a mean age of 46 (SD 15) years, and used, on average, 10 SABA inhalations per week. App usability was rated as good: 82.3 (SD 13.2; N=44) at 3 months. The Control of Allergic Rhinitis and Asthma Test score significantly improved at 3 months (18.5) compared with baseline (14.8; ß=.189; SE 0.048; P<.001); however, the obtained score still indicated uncontrolled asthma. At 3 months, there was no significant difference in the quality of life. Owing to the high dropout rate, insufficient data were collected at 6 and 12 months and were, therefore, not further examined. User data showed that 335 users opened the app (250/335, 74.6%, were returning visitors), with an average session time of 1 minute, and SABA registration was most often used (7506/13,081, 57.38%). Qualitative data (from a total of 4 participants; n=2, 50% female) showed that the participants found the app acceptable and clear. Three participants stated that gaining insight into asthma and its triggers was helpful. Two participants no longer used the app because they perceived their asthma as controlled and, therefore, did not use SABA often or only used it regularly based on the advice of the pulmonologist. CONCLUSIONS: The initial findings regarding the app's feasibility and usability are encouraging. However, the notable dropout rate underscores the need for a cautious interpretation of the results. Subsequent studies, particularly those focusing on implementation, should explore the potential integration of the app into standard treatment practices.

Using Animated Videos to Promote the Accessibility and Understandability of Package Leaflets: Retrospective Observational Study Evaluating the First Year of Implementation.

BACKGROUND: The medication package leaflet is the most used and trusted source of information in the home situation but is often incomprehensible for individuals, especially for those with limited health literacy. The platform "Watchyourmeds" comprises a web-based library with over 10,000 animated videos that explain the most essential information from the package leaflet in an unambiguous and simple manner to increase the accessibility and understandability of package leaflets. OBJECTIVE: This study aimed to investigate Watchyourmeds in the Netherlands from a user perspective during the first year of implementation by investigating (1) usage data, (2) self-reported user experiences, and (3) the preliminary and potential impact on medication knowledge. METHODS: This was a retrospective observational study. The first aim was investigated by examining objective user data from 1815 pharmacies from the first year of implementation of Watchyourmeds. User experiences (second aim) were investigated by examining individuals' completed self-report questionnaires (n=4926) that they received after completing a video. The preliminary and potential impact on medication knowledge (third aim) was investigated by examining users' self-report questionnaire data (n=67) that assessed their medication knowledge about their prescribed medication. RESULTS: Nearly 1.8 million videos have been distributed to users by over 1400 pharmacies, with monthly numbers increasing to 280,000 in the last month of the implementation year. Most users (4444/4805, 92.5%) indicated to have fully understood the information presented in the videos. Female users reported more often to have fully understood the information than male users (χ24=11.5, P=.02). Most users (3662/4805, 76.2%) said that they did not think any information was missing in the video. Users with a lower educational level stated more often (1104/1290, 85.6%) than those with a middle (984/1230, 80%) or higher (964/1229, 78.4%) educational level that they did not seem to be missing any information in the videos (χ212=70.6, P<.001). A total of 84% (4142/4926) of the users stated that they would like to use Watchyourmeds more often and for all their medication, or would like to use it most of the time. Male users and older users stated more often that they would use Watchyourmeds again for other medication than the female (χ23=25.0, P<.001) and younger users (χ23=38.1, P<.001), respectively. Almost 88% (4318/4926) of the users would recommend the web-based library to friends, family, or acquaintances. Regarding the third aim, results showed that 73.8% (293/397) of the questions assessing users' medication knowledge were answered correctly. CONCLUSIONS: The results of this study suggest that a web-based library with animated videos is a valuable and acceptable addition to stand-alone package leaflets to increase the understanding and accessibility of medication information.

Effectiveness, usability and acceptability of a smart inhaler programme in patients with asthma: protocol of the multicentre, pragmatic, open-label, cluster randomised controlled ACCEPTANCE trial.

INTRODUCTION: Suboptimal asthma control is associated with incorrect inhaler use and poor medication adherence, which could lead to unfavourable clinical and economic outcomes. Smart inhaler programmes using electronic monitoring devices (EMDs) could support self-management and increase medication adherence and asthma control. However, evidence on long-term benefits and acceptability is scarce. This study aims to investigate the effectiveness of a smart inhaler asthma self-management programme on medication adherence and clinical outcomes in adults with uncontrolled asthma, to evaluate its acceptability and to identify subgroups who would benefit most based on patient characteristics. METHODS AND ANALYSIS: This open-label cluster randomised controlled trial of 12 months will be conducted in primary care in the Netherlands. General practices will be randomly assigned to either intervention or control group. We aim to include 242 patients. The intervention consists of (1) an EMD attached to the patient's inhaler that measures medication use; (2) a smartphone application to set medication reminders, receive motivational messages and track asthma symptoms; and (3) a portal for healthcare professionals to view data on medication use. The control group is passively monitored by the EMD but cannot view their inhaler data or receive feedback. Eligible patients are adults with suboptimal controlled asthma (Asthma Control Questionnaire score ≥0.75) with evidence of non-adherence established by the EMD during a 6-week run-in period. Primary outcome is the difference in mean medication adherence between intervention and control group. Secondary outcomes include asthma control, asthma-related quality of life, exacerbations, acceptance, cost-effectiveness and whether the effect of the intervention on medication adherence and asthma control is modified by patient characteristics (eg, self-efficacy, medication beliefs and eHealth literacy).Trial registration numberNL7854.

Developing a Smartphone Application That Promotes Responsible Short-Acting Beta2-Agonist Use in People with Asthma: A Participatory Design.

Around 339 million people worldwide have asthma, and 50% have uncontrolled asthma. One trait of uncontrolled asthma, often seen in primary care, is short-acting ß2-agonist (SABA) overuse, defined as using SABA more than twice a week. SABA overuse can cause adverse health effects. An application could help patients gain more insight into their SABA use. Engaging stakeholders during the development is important to maximize the usability of and adherence to an application. This study describes the development process of an application that promotes responsible SABA use in people with asthma, using a participatory design. Different stakeholder groups were involved in two iterative development cycles. In the first cycle, four end-users evaluated the app's prototype. During the second cycle, five end-users were interviewed about the usability of the new version. Resulting in an app that allows patients to register SABA use, asthma symptoms, and symptom triggers. A graph shows how these factors are related, and end-users can show the graph to their physician to facilitate communication. Medication use is compared to the medical guidelines or, when applicable, to the advice given by the users' healthcare professionals. End-users found the app helpful. Research into the usability and effectiveness of the app in a bigger sample will follow.