Impact of patient-accessible electronic medical records in rheumatology: use, satisfaction and effects on empowerment among patients

Background To measure the use, satisfaction and impact of a web portal which provides patients with rheumatoid arthritis home access to their electronic medical records (EMR). Methods A pretest-posttest study was conducted among 360 patients. Questionnaires assessed socio-demographics, health literacy, Internet use, disease characteristics, patient-provider relationship and empowerment before and after launching a hospital-based patient web portal. To measure the impact of the portal, patients’ satisfaction with care, trust in their rheumatologist, self-efficacy in patient-provider communication, illness perceptions, and medication adherence were assessed. The post-test included questions on portal use, satisfaction, and self-perceived impact due to portal use. Results 54% of respondents with Internet access had viewed their EMR. Respondents were positive about the ease of use and usefulness of the portal and reported very few problems. Age (P = .03), amount of Internet use (P = .01) and self-perceived Internet skills (P = .03) significantly predicted portal use. Of the respondents who had logged in, 44% reported feeling more involved in their treatment and 37% felt they had more knowledge about their treatment. Significant differences over time were not found on the empowerment-related instruments. Conclusions The current portal succeeded in offering patients access to their EMR in a usable and understandable way. While its true impact is difficult to grasp, a relevant portion of the patients felt more involved in their treatment due to the web portal. Offering patients home EMR access, therefore, appears to be a valuable addition to the care proces

Co-Creation of a Working Model to Improve Sexual Health for Persons Living with Rheumatological Diseases

This work is licensed under the Creative Commons Attribution-NonCommercial International License (CC BY-NC 4.0)Background: Sexual health needs are insufficiently met for persons living with rheumatological diseases and it is necessary to create better ways to meet these needs. Objective: To co-create a working model to improve sexual health for persons living with rheumatological diseases, that can be used by rheumatological teams in regular rheumatology practice. Design: This study applied a co-creation design with three key features: 1) it took a systems perspective with emergent multiple interactive entities; 2) the research process was viewed as a creative endeavour with strong links to design, while human imagination and the individual experience of patient and staff were at the core of the creative design effort; 3) the process of the co-creative efforts was as important as the generated product. Results: A model defining the role of the patient, the professionals, and the team in optimizing sexual health for persons living with rheumatological diseases was co-created. The model can be seen as a practice guideline, which includes the support needed from and to each participant in the process of promoting sexual health, while being within the professional scope of the professionals’ knowledge and capacity, and in line with the needs of the persons living with rheumatological diseases. Discussion and Conclusions: The co-creative work process identified crucial factors in promoting sexual health, resulting in a useful model for patients, professionals and teams. Co-creation was experienced to be a useful research design to improve rheumatological care, through valuing and using the competence of all research members equally.The study was funded by the Medical Research Council of Southeast Sweden, grant number FORSS701251.publishedVersio

Co-designing the inflammatory arthritis self-management (aiM) intervention.

Self-management is an integral part of care for people living with inflammatory arthritis. The benefits of self-management interventions for people living with long-term conditions are well established. To date, most of the inflammatory arthritis self-management interventions have targeted only rheumatoid arthritis. Therefore, there is a need for a self-management intervention that reaches beyond just people living with rheumatoid arthritis. The overarching aim of this project was to co-design a self-management intervention for people across the inflammatory arthritis spectrum, based on the needs and preferences of co-designers (i.e. both people living with IA and healthcare professionals), as well as on the scientific literature. This project commenced with a mixed-method systematic review exploring the effectiveness and acceptability of existing inflammatory arthritis self-management interventions. Then, a two-phase, sequential multi-methods approach was employed. The first phase involved five asynchronous co-design workshops, guided by the Intervention Mapping Framework (Bartholomew et al. 2016). The second phase then explored participants' experience in participating in co-design research, including the barriers and facilitators to co-design. The mixed-method systematic review demonstrated that inflammatory arthritis self-management interventions produced a clinically meaningful reduction in fatigue and pain in people living with inflammatory arthritis. There was also some data to suggest that inflammatory arthritis self-management interventions have a beneficial effect on self-efficacy; knowledge; communication; health- related quality of life; and engagement with self-management behaviours. Additionally, the review found that inflammatory arthritis self-management interventions are generally acceptable to people living with inflammatory arthritis and healthcare professionals. Workshop findings provided important insight into the health problems and self-management needs of people living with inflammatory arthritis. The workshops also helped to identify the key content and features of the developed self-management intervention - i.e. the inflAmmatory arthrItis self-Management (aiM) intervention. Participants reported having an overall positive experience participating in the workshops, which provided them with an opportunity to meet others living with IA. The use of asynchronous workshops was felt to contribute to the participants' high attendance rate and the study's low attrition, despite IT-issues that were reported as a barrier to the participants' ability to fully participate in the workshops. This project developed a novel self-management intervention, which aims to improve the health status of people living with inflammatory arthritis through increased engagement with self-management strategies. The aiM intervention is based on the needs and preferences of the co-designers, and is grounded in theory and evidence. The findings have also provided new knowledge regarding the health problems related to people living with inflammatory arthritis, their self-management needs, and mechanisms that facilitate and inhibit co-design processes in an asynchronous remote context. Moving forward, it is recommended that the aiM intervention be tested for its feasibility and acceptability

Co-designing a mobile Internet service for self-management of physical activity in rheumatiod arthritis

Aim: The overall aim of the thesis was to describe and evaluate the content and outcome of co-designing a mobile Internet service for self-management of physical activity in rheumatoid arthritis (RA) with active lead user involvement, within the action research paradigm. Context: Physical activity is known for its health benefits. However, maintaining a physically active lifestyle is a great challenge for most people, and maybe even more so for people living with RA. IT and mobile phones provide additional means to deliver health care services, i.e. mHealth, for physical activity self-management. Further, involvement of lead users in the development of services has been reported to improve their usability and effectiveness. Process: In the first phase of the co-design process, six focus group interviews were performed with lead users (n=26) to explore their ideas on core features (Study I). In the next phase, four workshops were conducted, which included lead users, clinical and researcher physiotherapists, an eHealth strategist and an officer from the Swedish Rheumatism Association (n=10). The aim was to specify the system requirements of the future service (Study II and III). Video recordings, natural observations, prototypes of the future service and an online notice board were used to collect data on the requirements and challenges of co-design. In the third phase, the first test version of the service was produced and evaluate in terms of the participants’ utilization of and experiences with the service (Study IV). Log-data were collected during the six week test period. Web questionnaires were sent out to and telephone interviews were performed with the participants after the test period. Content: Four core aspects that are important to consider in the development of the mHealth service were identified: features, customized options, user interface, and access and implementation (result Study I). To produce the requirements specification, the participants had to merge their different perspectives, which was the core challenge of codesign (Study II). The merging resulted in “tRAppen”, an mHealth service for maintenance of physical activity. tRAppen included two key components: 1) “My self-regulation features” and 2) “My peer support features” (result Study III). The first test version of tRAppen included 22 different behavior change techniques. Outcome: Twenty-eight participants tested tRAppen (result Study IV). Most participants registered physical activity, sent likes and made an exercise plan. tRAppen was generally rated as easy and fun to use, and all participants would recommend it to other people. The results also described the experiences of using tRAppen as being influenced by physical and mental state and personal preferences. Conclusions: The use of co-design in the development of the physical activity selfmanagement service tRAppen was successful. The first test version of tRAppen was perceived as feasible and to have the potential to support a physically active lifestyle in people with RA. Co-design in collaborative workshops was an extensive decision-making process that put high demands on the participants’ ability to find solutions, negotiate, come to agreements and reach final decisions

EULAR points to consider for the development, evaluation and implementation of mobile health applications aiding self-management in people living with rheumatic and musculoskeletal diseases

Background: Mobile health applications (apps) are available to enable people with rheumatic and musculoskeletal diseases (RMDs) to better self-manage their health. However, guidance on the development and evaluation of such apps is lacking. Objectives: The objective of this EULAR task force was to establish points to consider (PtC) for the development, evaluation and implementation of apps for self-management of RMDs. Methods: A systematic literature review of app content and development strategies was conducted, followed by patient focus group and an online survey. Based on this information and along with expert opinion, PtC were formulated in a face-to-face meeting by a multidisciplinary task force panel of experts, including two patient research partners. The level of agreement among the panel in regard to each PtC was established by anonymous online voting. Results: Three overarching principles and 10 PtC were formulated. Three PtC are related to patient safety, considered as a critical issue by the panel. Three were related to relevance of the content and functionalities. The requirement for transparency around app development and funding sources, along with involvement of relevant health professionals were also raised. Ease of app access across ages and abilities was highlighted, in addition to considering the cost-benefit of apps from the outset. The level of agreement was from 8.8 to 9.9 out of 10. Conclusion: These EULAR PtC provide guidance on important aspects that should be considered for the development, evaluation and implementation of existing and new apps

Usability testing of JIActiv, a social media-based program promoting engagement in physical activity among young people living with juvenile idiopathic arthritis

L'arthrite juvénile idiopathique (AJI) est une maladie chronique infantile d'origine inconnue caractérisée par de la douleur chronique, des enflures articulaires et de la fatigue. Malgré les effets positifs de l'activité physique (AP) sur les symptômes reliés à l’arthrite et la santé générale, les jeunes atteints d'AJI adoptent souvent un mode de vie sédentaire. Par conséquent, ils sont plus à risque de développer d’autres maladies chroniques telles les maladies cardio-vasculaires. Cela nécessite l’accès à un programme efficace pour inciter ces personnes à faire de l'AP. En réponse à ceci, notre équipe a développé le programme ActiJI livré sur Instagram promouvant l’engagement à l’AP auprès des jeunes personnes vivant avec l’AJI. La présente étude évalue l’utilisabilité d’ActiJI en ciblant la satisfaction et la performance d’utilisation parmi les jeunes atteints d'AJI. Une étude qualitative descriptive a été utilisée. Des adolescents (âgés de 13 à 17 ans) et des jeunes adultes (âgés de 18 à 25 ans) atteints d'AJI ont été recrutés via des associations patients, des centres hospitaliers et de réadaptation. Au total, 28 participants (âge moyen = 18,69 ans) ont complété des entretiens semi-dirigés sur deux cycles itératifs via Zoom (Enterprise Version 5.0.2). Les verbatims ont été transcrits, puis triés, organisés et codés avec MAXQDA 11 selon les recommandations de Huberman et al.. Le processus de codage s'est appuyé sur six thèmes ancrés dans les principes théoriques de l’utilisabilité et définis par les équipes de recherche, ceux-ci comprenaient la confidentialité et la sécurité, l'esthétique du design, les fonctionnalités, l'organisation, la connexion sociale et le contenu de la page. Nos résultats démontrent que le programme ActiJI est vu comme étant sécuritaire, convivial, et est apprécié pour ses activités de groupe et les interactions entre pairs. En particulier, le soutien éventuel offert par les professionnels de santé et les pairs motiveraient les jeunes atteints d'AJI à s'engager davantage dans l'AP. Les participants rapportent que le programme ActiJI est facilement utilisable, et que la page Instagram peut être naviguée efficacement. Les recommandations des participants ont été intégrées au programme ActiJI. Une prochaine étude visera à évaluer la faisabilité d’ActiJI.Juvenile idiopathic arthritis (JIA) is the most common childhood chronic rheumatic condition of unknown origin and is characterized by chronic pain, joint inflammation and fatigue. Despite the benefits of physical activity (PA) in mitigating arthritis symptoms and for general health, young people with JIA have a greater tendency to adopt a sedentary lifestyle rather than engage in PA. Consequently, these young people are at greater risk for other chronic health conditions such as cardiovascular disease. Access to innovative and attractive means of promoting PA among these young people is sorely needed. In response to this need, our team developed JIActiv an Instagrambased program promoting physical activity among young people living with JIA. The current study aimed to assess the usability of the JIActiv program in terms of user performance and the level of satisfaction among adolescents and young adults living with JIA. We used a descriptive qualitative study design. Adolescents (ages 13 to 17 years) and young adults (aged 18 to 25 years) living with JIA were recruited from rheumatology clinics in rehabilitation and hospital centers, as well as through patient organizations. A total of 28 young people (mean age = 18.69, SD=± 2.28 years) completed semi-structured interviews over two iterative cycles using Zoom (Enterprise Version 5.0.2). The audio recordings of the interviews were transcribed word by word, then sorted, organized, and coded using MAXQDA 11 software following recommendations by Huberman et al.. The coding process was based on six themes anchored within the theoretical principals of usability testing and were specified by the research teams, which included privacy and safety, design aesthetics, functionalities, organization, social connection, and content of the page . Our findings have shown that the JIActiv program is viewed as secure and user-friendly. Participants appreciated the group activities and peer interactions. Notably, the potential support offered by healthcare professionals and peers may motivate those living with JIA to engage more in PA. Study participants reported that the JIActiv program was easy to use, and they navigated the Instagram page effectively. Participant recommendations were integrated within the JIActiv program. A subsequent study will assess the feasibility of JIActiv

Exploring Rheumatoid Arthritis Patients' Needs in Shared Decision Making: A Qualitative User Needs Study

Background: Rheumatoid arthritis (RA) is a chronic inflammatory debilitating joint condition with individualized symptom severity. Access to multiple medication choices allow consideration of patient preferences and fit to their lifestyles. Shared decision making (SDM) is a recent approach in medicine where medical decisions are formed in combination of latest scientific evidence, patient’s lived experiences, and physician’s clinical expertise. SDM may be a fitting approach for RA due to the extended time allowed for developing patient-physician rapport, room to discuss patient preferences, and decisions to be revisited. Objective: To explore user needs and challenges to support RA patients in shared decision-making processes as it relates to chronic disease management, self-monitoring, and medication choices. Methods: Semi-structured interviews were conducted with RA patients (n=13) recruited from the Canadian Arthritis Patient Alliance. Thematic analysis was performed using NVivo software. Data was coded inductively and iterated on until no new themes emerged. Results: Three main themes emerged from interview data. (1) Gaps in Psychosocial Care: Relevant to short and long-term medication side effects, sexual health, mental health, and family planning were sensitive and stigmatized topics which were often dismissed at the rheumatologist’s visits. (2) Patient Agency: RA patients were exercising patient agency needed for SDM through proactively seeking knowledge about their disease; making personal judgements on medications based on their symptoms; and relying on their social support networks for tough decisions. (3) Adaptations: Over years of dealing with RA, patients reported adaptations, such as flexibility to psychological adaptations, improved general health through modifiable lifestyle factors, and several minor ergonomic changes for improved daily comfort. Conclusion: Designs in health technology to support RA patients with SDM may benefit by acknowledging the dynamic nature of RA as a chronic disease. Further socio-technologic developments can minimize the burden of living with RA