Introduction: eHealth seems promising in addressing challenges in the provision of care for Huntington’s disease (HD) across Europe. By harnessing information and communication technologies, eHealth can partially relocate care from specialized centers to the patients’ home, thereby increasing the availability and accessibility of specialty care services beyond regional borders. Previous research on eHealth (development) in HD is however limited, especially when it comes to including eHealth services specifically designed together with HD gene expansion carriers (HDGECs) and their partners to fit their needs and expectations. Methods: This article describes the qualitative human-centered design process and first evaluations of the Huntington Support App prototype: a web-app aimed to support the quality of life (QoL) of HDGECs and their partners in Europe. Prospective end-users, i.e., HDGECs, their partners, and healthcare providers (HCPs), from different countries were involved throughout the development process. Through interviews, we captured people’s experiences with the disease, quality of life (QoL), and eHealth. We translated their stories into design directions that were further co-designed and subsequently evaluated with the user groups. Results: The resulting prototype centralizes clear and reliable information on the disease, HD-related news and events, as well as direct contact possibilities with HCPs via an online walk-in hour or by scheduling an appointment. The app’s prototype was positively received and rated as (very) appealing, pleasant, easy to use and helpful by both HDGECs and partners. Discussion: By involving end-users in every step, we developed a healthcare app that meets relevant needs of individuals affected by HD and therefore may lead to high adoption and retention rates. As a result, the app provides low-threshold access to reliable information and specialized care for HD in Europe. A description of the Huntington Support App as well as implications for further development of the app’s prototype are provided.

@en

Objective: This study aimed to design a persuasive game, using objective adherence data, to motivate people with asthma to adhere to their medication regimen. Methods: A participatory user-centered design approach was employed, involving end-users and other stakeholders throughout the study. The approach consisted of four phases. Semi-structured interviews and a survey were conducted to understand user needs and reasons for poor adherence (Phase 1: define). Key themes were identified, leading to the formulation of behavior change strategies and design and game requirements. Several design directions were ideated, resulting in a concept for a serious game (Phase 2: ideate). Two rounds of user-tests were performed to evaluate a prototype of the serious game in terms of usability, perceived impact on medication adherence and motivation (Phase 3: prototype and Phase 4: evaluate). Results: Findings from semi-structured interviews (n = 6) and the online survey (n = 20) revealed that people’s non-adherence was often attributed to the perception of asthma as an episodic condition, the delayed experienced effect of maintenance inhalers, and lack of knowledge regarding difference of effect between maintenance and reliever inhalers. The study used behavior change strategies to translate these insights into design requirements for the development of the narrative-based persuasive game Ademgenoot. This six-week challenge-based game combines various behavior change strategies, including personal goal setting and continuous visual feedback, as well as persuasive game design elements, such as a narrative and rewards, with the aim of enhancing motivation to adhere to their medication regimen. User-testing (n = 8; round 1 and 2) showed that Ademgenoot is feasible in clinical practice and has the potential to support people with mild asthma in adherence to their maintenance medication. Discussion: Future efforts should be directed towards a larger evaluation to assess the impact on motivation and inhaler use behaviour. Plain Language Summary: The goal of this study was to create a serious game that encourages people with asthma to take their medication regularly. During the study, we worked closely with individuals who have asthma and other stakeholders throughout the study. We conducted interviews and surveys to understand why people have difficulties using their maintenance inhaler as prescribed by their doctor. Based on the feedback we received, we developed a serious game called “Ademgenoot”. The game uses information on inhaler use automatically collected with a device attached to the inhaler. The game includes features like personal goals and visual feedback on inhaler use to motivate users to take their medication consistently. We tested a prototype of the game with users to see if it was easy to use and if it motivated them to use their maintenance inhaler. The results showed that Ademgenoot is a viable option for helping individuals with mild asthma stay on track with their medication.

@en

Background: Smoking and physical inactivity are two key preventable risk factors of cardiovascular disease. Yet, as with most health behaviors, they are difficult to change. In the interdisciplinary Perfect Fit project, scientists from different fields join forces to develop an evidence-based virtual coach that supports smokers in quitting smoking and increasing their physical activity. Intervention content, design and implementation as well as lessons learnt are presented in the hopes of guiding other research groups working on similar projects. Methods: Numerous approaches were used and combined to support the development of the Perfect Fit virtual coach. Approaches include literature reviews, empirical studies, collaboration with end-users, content and technical development sprints, interdisciplinary collaboration and iterative proof-of-concept implementation. Findings: The Perfect Fit intervention integrates evidence-based behavioral change techniques as well as new techniques focused on identity change, big data science, sensor technology and personalized real-time coaching. Intervention content of the virtual coaching matches communication preferences and individual needs of end users. Lessons learnt include ways to optimally implement and tailor interactions from the virtual coach (e.g., ‘explain why user is asked for input’, ‘tailor timing and frequency of intervention components’). With regards to the development process, lessons learnt include strategies for effective interdisciplinary collaboration and technical development (e.g., ‘Find a good balance between wishes of end-users and legal possibilities’). Discussion: The Perfect Fit development process was interactive, iterative and challenging at times. We hope that our experiences and lessons learnt can inspire and benefit others.@en

Background: Current eHealth interventions are poorly adopted by people with low health literacy (LHL) as they often fail to meet their needs, skills, and preferences. A major reason for this poor adoption is the generic, one-size-fits-all approach taken by designers of these interventions, without addressing the needs, skills, and preferences of disadvantaged groups. Participatory design approaches are effective for developing interventions that fit the needs of specific target groups; yet, very little is known about the practical implications of executing a participatory design project for and with people with LHL. Objective: This study aimed to demonstrate the application of participatory design activities specifically selected to fit the needs and skills of people with LHL and how these were manifested within an overarching eHealth design process. In addition, the study aims to present reflections and implications of these activities that could support future designers to engage people with LHL in their design processes. Methods: We used the design process of a smart asthma inhaler for people with asthma and LHL to demonstrate participatory design activities. The study was framed under 5 stages of design thinking: empathize, define, ideate, prototype, and test within 2 major iteration cycles. We integrated 3 participatory design activities deemed specifically appropriate for people with LHL: co-constructing stories, experience prototype exhibition, and video prototype evaluation. Results: Co-constructing stories was found to deepen the understanding of the participant’s motivation to use or not to use maintenance medication. This understanding informed and facilitated the subsequent development of diverse preliminary prototypes of possible interventions. Discussing these prototypes in the experience prototype exhibition helped provoke reactions, thoughts, and feelings about the interventions, and potential scenarios of use. Through the video prototype evaluation, we were able to clearly communicate the goal and functionality of the final version of our intervention and gather appropriate responses from our participants. Conclusions: This study demonstrates a participatory design approach for and with patients with asthma and LHL. We demonstrated that careful consideration and selection of activities can result in participants that are engaged and feel understood. This paper provides insight into the practical implications of participatory activities with people with LHL and supports and inspires future designers to engage with this disadvantaged target group.

@en

Goal-setting is often used in eHealth applications for behavior change as it motivates and helps to stay focused on a desired outcome. However, for goals to be effective, they need to meet criteria such as being specific, measurable, attainable, relevant and time-bound (SMART). Moreover, people need to be confident to reach their goal. We thus created a goal-setting dialog in which the virtual coach Jody guided people in setting SMART goals. Thereby, Jody provided personalized vicarious experiences by showing examples from other people who reached a goal to increase people’s confidence. These experiences were personalized, as it is helpful to observe a relatable other succeed. Data from an online study with a between-subjects with pre-post measurement design (n=39 participants) provide credible support that personalized experiences are seen as more motivating than generic ones. Motivational factors for participants included information about the goal, path to the goal, and the person who accomplished a goal, as well as the mere fact that a goal was reached. Participants also had a positive attitude toward Jody. We see these results as an indication that people are positive toward using a goal-setting dialog with a virtual coach in eHealth applications for behavior change. Moreover, contrary to hypothesized, our observed data give credible support that participants’ self-efficacy was lower after the dialog than before. These results warrant further research on how such dialogs affect self-efficacy, especially whether these lower post-measurements of self-efficacy are associated with people’s more realistic assessment of their abilities.@en

Background: Medical procedures can cause considerable stress and anxiety among children. Current interventions mainly diminish stress and anxiety during procedures, while stress and anxiety often build up at home. Moreover, interventions often focus on either distraction or preparation. eHealth can combine multiple strategies and provide a low-cost solution that can be used outside the hospital. Objective: To develop an eHealth solution to diminish preprocedural stress and anxiety, and to evaluate the app on use, usability and user experience in practice. We also aimed to gain in-depth insights in children's and caregivers' opinions and experiences to inform future improvements. Methods: This is a multi-study report on the development (Study 1) and evaluation (Study 2) of a first version of the developed app. In study 1 we adopted a participatory design approach in which children's experiences were central to the design process. We performed an experience journey session with stakeholders (n = 13) to map the child's outpatient journey, identify pains and gains, and formulate the desired experience journey. Iterative development and testing with children (n = 8) and caregivers (n = 6) resulted in a working prototype. The prototype was tested with children, resulting in a first version of the Hospital Hero app. The app was evaluated on use, user-experience and usability during an eight-week pilot study in practice (Study 2). We triangulated data from online interviews with children and caregivers (n = 21) and online questionnaires (n = 46). Results: Multiple stress and anxiety experience touchpoints were identified. The Hospital Hero app supports children in their hospital journey by facilitating preparation at home and providing distraction at the hospital. The pilot study showed that the app was evaluated positively on usability and user-experience and is considered feasible. Qualitative data showed five themes: (1) user-friendliness, (2) coherence and power of storytelling, (3) motivation and reward, (4) fit with real hospital journey, (5) procedural comfort. Discussion: Using participatory design, we developed a child-centered solution that supports children in the entire hospital journey and may diminish preprocedural stress and anxiety. Future efforts should create a more tailored journey, define an optimal engagement window and formulate implementation strategies.

@en

Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that affects the quality of life (QoL) of HD gene expansion carriers (HDGECs) and their partners. Although HD expertise centers have been emerging across Europe, there are still some important barriers to care provision for those affected by this rare disease, including transportation costs, geographic distance of centers, and availability/accessibility of these services in general. eHealth seems promising in overcoming these barriers, yet research on eHealth in HD is limited and fails to use telehealth services specifically designed to fit the perspectives and expectations of HDGECs and their families. In the European HD-eHelp study, we aim to capture the needs and wishes of HDGECs, partners of HDGECs, and health care providers (HCPs) in order to develop a multinational eHealth platform targeting QoL of both HDGECs and partners at home. Methods: We will employ a participatory user-centered design (UCD) approach, which focusses on an in-depth understanding of the end-users' needs and their contexts. Premanifest and manifest adult HDGECs (n = 76), partners of HDGECs (n = 76), and HCPs (n = 76) will be involved as end-users in all three phases of the research and design process: (1) Exploration and mapping of the end-users' needs, experiences and wishes; (2) Development of concepts in collaboration with end-users to ensure desirability; (3) Detailing of final prototype with quick review rounds by end-users to create a positive user-experience. This study will be conducted in the Netherlands, Germany, Czech Republic, Italy, and Ireland to develop and test a multilingual platform that is suitable in different healthcare systems and cultural contexts. Discussion: Following the principles of UCD, an innovative European eHealth platform will be developed that addresses the needs and wishes of HDGECs, partners and HCPs. This allows for high-quality, tailored care to be moved partially into the participants' home, thereby circumventing some barriers in current HD care provision. By actively involving end-users in all design decisions, the platform will be tailored to the end-users' unique requirements, which can be considered pivotal in eHealth services for a disease as complex and rare as HD.

@en

Duurzame gedragsverandering is moeilijk, zelfs wanneer het huidige gedrag een groot risico vormt voor de gezondheid. Gedragsverandering wordt gemakkelijker als het nieuwe gedrag past bij hoe een individu zichzelf ziet (identiteit). Virtuele coaching is veelbelovend om gedrags- en identiteitsverandering te ondersteunen, omdat het altijd beschikbaar is in de eigen omgeving en optimaal kan worden gepersonaliseerd.@en