Short term effectiveness and experiences of a peer guided web-based self-management intervention for young adults with juvenile idiopathic arthritis.

BACKGROUND: A web-based self-management intervention guided by peer-trainers was developed to support young adults' self-management in coping with Juvenile Idiopathic Arthritis (JIA). To investigate its effectiveness, a randomized controlled trial (RCT) was conducted. In addition, the content of the chat and participants' goals were studied to identify underlying processes. METHODS: An RCT with a six-month follow up period was conducted among 72 young adults with JIA, aged between 16 and 25 years old, randomly assigned to the intervention or to the usual care control group. After 24 weeks, in both groups 24 participants completed all measurements. Intentions to treat analyses were carried out by means of linear mixed models for longitudinal measurements. With self-efficacy as primary outcome, self-management, disease activity, quality of life, absenteeism of school/work, health care medication use and adherence to the intervention were studied. The participants' goals, personal achievements, interactions on the chat, and their appreciation of the intervention were analyzed using thematic analyses. RESULTS: No significant differences were found on self-efficacy, quality of life, and self-management between the participants of the control group and the intervention group. In the intervention group, modeling and sharing experiences were the most recognized themes. Fifty-five goals were formulated and divided into the following categories: improvement and maintaining balance, setting and recognizing boundaries, communicating and coping with incomprehension. Adherence, appreciation of the own learning experience, and personal achievements were rated positively. CONCLUSION: The web-based intervention did not lead to an improvement of self-efficacy. However, additional qualitative analyses showed that the intervention was appreciated and valuable for the participants. More research is needed on how to measure the added value of this intervention compared to the usual care. TRIAL REGISTRATION: Trial registration number NTR4679 .

Preferences and needs of patients with a rheumatic disease regarding the structure and content of online self-management support.

OBJECTIVE: Aim of this study was to investigate preferences and needs regarding the structure and content of a person-centered online self-management support intervention for patients with a rheumatic disease. METHODS: A four step procedure, consisting of online focus group interviews, consensus meetings with patient representatives, card sorting task and hierarchical cluster analysis was used to identify the preferences and needs. RESULTS: Preferences concerning the structure involved 1) suitability to individual needs and questions, 2) fit to the life stage 3) creating the opportunity to share experiences, be in contact with others, 4) have an expert patient as trainer, 5) allow for doing the training at one's own pace and 6) offer a brief intervention. Hierarchical cluster analysis of 55 content needs comprised eleven clusters: 1) treatment knowledge, 2) societal procedures, 3) physical activity, 4) psychological distress, 5) self-efficacy, 6) provider, 7) fluctuations, 8) dealing with rheumatic disease, 9) communication, 10) intimate relationship, and 11) having children. CONCLUSION: A comprehensive assessment of preferences and needs in patients with a rheumatic disease is expected to contribute to motivation, adherence to and outcome of self-management-support programs. PRACTICE IMPLICATIONS: The overview of preferences and needs can be used to build an online-line self-management intervention.

Feasibility of a Website and a Hospital-Based Online Portal for Young Adults With Juvenile Idiopathic Arthritis: Views and Experiences of Patients.

BACKGROUND: To improve knowledge and to encourage active involvement of young adults with juvenile idiopathic arthritis (JIA), an informative website with written and video information and an online portal with access to the personal medical record, self-monitoring, and e-consult functionalities were developed. Before implementing these applications in daily practice, it is important to gain insight into their feasibility in terms of ease of use, perceived usefulness and intention to use. OBJECTIVE: The aim of this study was to evaluate and to examine the feasibility of the website and the online portal for young adults with JIA. METHODS: A qualitative, feasibility study was conducted among the first users: 13 young adults with JIA. After provided access to the website and online portal, patients were interviewed on perceived usefulness, ease of use, and intention to (re)use the applications. RESULTS: Participants in the study considered the website and online portal as useful and easy-to-use. New medical information and feedback would motivate them to revisit the applications again. On the website, videos showing other young adults, telling how they handle their condition, were found as the most useful. On the portal, access to their medical records was most appreciated: it made the young JIA patients feel in control and it helped them monitor symptoms and disease activity. e-consults were thought to facilitate communication with physicians. CONCLUSIONS: The young adults considered both the website and the online portal as feasible, but they also had valuable suggestions to improve accessibility and use. Based on these findings, a news and event section was added on the website and a direct link was made to a discussion board and social media. To provide and support health information, the website is actively used in daily care. Considering the online portal, the use of self-monitoring tools and e-consult can be stimulated if there is direct linkage to treatment and feedback from the multidisciplinary team. Feasibility testing, before implementing the website and online portal in daily practice, has proven to be a valuable step. Results led to improvements in terms of integration into standard care and topics for further research.

Feasibility of an online and a face-to-face version of a self-management program for young adults with a rheumatic disease: experiences of young adults and peer leaders.

BACKGROUND: Based on the self-efficacy theory, an online and a face-to-face self-management programs 'Challenge your Arthritis' for young adults with a rheumatic disease have recently been developed. These two courses are led by young peer leaders. The objective of this study was to test the feasibility of the online and face-to-face self-management program. METHODS: Feasibility was evaluated on items of perceived usefulness, perceived ease of use, user-acceptance, and adherence to both programs in young adults and peer leaders. Additional analyses of interactions on the e-Health applications, discussion board and chat board, were conducted. RESULTS: Twenty-two young adults with a diagnosed rheumatic disease participated in the study: 12 young adults followed the online program and 10 followed the face-to-face program. Both programs appeared to be feasible, especially in dealing with problems in daily life, and the participants indicated the time investment as 'worthwhile'. In using the online program, no technical problems occurred. Participants found the program easy to use, user friendly, and liked the 'look and feel' of the program. CONCLUSIONS: Both the online and the face-to-face versions of a self-management program. 'Challenge your arthritis' were found to be feasible and well appreciated by young adults with a rheumatic disease. Because these programs are likely to be a practical aid to health practices, a randomized controlled study to investigate the effects on patient outcomes is planned.