Disease activity and dropout in young persons with juvenile idiopathic arthritis in transition of care: a longitudinal observational study.

OBJECTIVES: Reaching a certain age, juvenile idiopathic arthritis (JIA) patients in paediatric care are transferred to adult care. An increased disease activity after transfer and increased dropout has been suggested, however, evidence is scarce. Our aim is to determine whether the process of transition is associated with increased disease-activity and dropout, and to identify associated factors. METHODS: During a 3-year prospective transition cohort study, paediatric patients (14-17yrs) were transferred to adult care. Paediatric (10-13yrs) and adult JIA patients (18-27yrs) were used as control groups. Demographic and disease-related items were obtained yearly. Non-parametric tests were used to compare differences between the groups and mixed models to evaluate disease activity over time, measured by JADAS27 and DAS28. Dropout was defined as not attending the clinic for 2 consecutive visits. RESULTS: Groups did not differ regarding baseline variables of subtype, gender, uveitis, ANA-, RF- or HLA B27-positivity and current or past DMARD use. Median disease activity was not different between groups during follow-up. Transfer was not associated with disease activity. Dropout rate was 12%, and was significantly higher in patients under transition (22%) compared with paediatric (3%) and adult care (10%). Patients who dropped out had significantly lower disease activity at baseline and were using less MTX, but did not differ regarding subtype, ANA, RF and HLA-B27. CONCLUSIONS: The process of transition in JIA is not associated with an increase in disease activity, however, this period carries a risk for drop out especially in patients with low disease activity.

Validation of the dutch version of the health education impact questionnaire (HEIQ) and comparison of the Dutch translation with the English, German and French HEIQ.

BACKGROUND: The Health Education Impact Questionnaire (heiQ) evaluates the effectiveness of health education and self-management programs provided to people dealing with a wide range of conditions. Aim of this study was to translate, culturally adapt and validate the Dutch translation of the heiQ and to compare the results with the English, German and French translations. METHODS: A systematic translation process was undertaken. Psychometric properties were studied among patients with arthritis, atopic dermatitis, food allergy and asthma (n = 286). Factorial validity using confirmatory factor analysis, item difficulty (D), item remainder correlation and composite reliability were conducted. Stability was tested using the intra-class correlation coefficient (ICC). RESULTS: Items were well understood and only minor language adjustments were required. Confirmatory fit indices were >0.95 and item difficulty was D ≥ 0.65 for all items in scales showing acceptable fit indices, except for the reversed Emotional distress scale. Composite reliability ranged between 0.67 and 0.85. Test-retest reliability (n = 93) ICC varied between 0.61 and 0.84. Comparisons with other translations showed comparable fit indices. A lower ICC on Self-monitoring and insight scale was observed. CONCLUSIONS: The Dutch translation of the heiQ was found to be well understood and user friendly by patients with Rheumatoid Arthritis, Atopic Dermatitis, Food allergy and asthma and to have robust psychometric properties for evaluating the impact of health education and self-management programs. Given the wide applications of the heiQ and the comparability of the Dutch results with the English, German and French version, the heiQ is a practical and useful questionnaire to evaluate the impact of self-management support programs in different countries and populations with different diseases.

Patients' needs and expectations with regard to rheumatology nursing care: results of multicentre focus group interviews.

OBJECTIVE: The contribution of rheumatology nurses to improved patient outcomes is increasingly recognised but more research is needed about the effects of interventions. The patient's role in deciding about healthcare quality is considered pivotal and therefore patients' opinions and expectations should be directional in defining priorities for a research agenda. The objective of this study was to explore needs and expectations with regard to rheumatology nursing care in patients with chronic inflammatory arthritis (CIA). METHODS: Patients aged 18-90 years from three medical clinics in different regions in The Netherlands were invited to participate in focus group interviews. The interviews were transcribed verbatim and independently analysed by the authors. In a consensus meeting the emerging subjects were categorised into themes which were verified in a fourth interview. RESULTS: In total, 20 patients, mean age 57 years old, participated in the focus group interviews. The majority had rheumatoid arthritis and mean disease duration was 15 years. The focus group interviews revealed 12 subthemes that were organised into four main themes: education, self-management support, emotional support and well organised care. Additionally, patients considered opinions about 'the personality of the nurse' (eg, easy to talk to) to be important. CONCLUSIONS: Patients with CIA mentioned that many problems have to be addressed when one is faced with having a rheumatic disease. The focus group interviews yielded valuable information about the care these patients need and expect. This information will direct future research with regard to rheumatology nursing care.

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 .

The most important needs and preferences of patients for support from health care professionals: A reflective practice on (transitional) care for young adults with Juvenile Idiopathic Arthritis.

In this manuscript, presented as a Reflective Practice, the learning experiences and reflections of a healthcare team on redeveloping the transitional care for young adults with a juvenile rheumatic disease are described. In this process of redeveloping care, the healthcare team experienced that small step, driven by patient stories and involvement of patients in all phases from development to evaluation, led to meaningful results. The eHealth interventions, developed to support the transition and to increase self-management were found to be feasible and evaluated positively by the young adult group. But the healthcare team also experienced that the focus on the patient alone, is not enough to implement self-management interventions and sustain patient centered care in daily practice. How healthcare professionals personally think and feel about patient centered care is essential and needs to be discussed in daily care.It determines the way of being present with attention and commitment in daily health care. It affects the hands, head and heart. A daily reflection on shared answers of the patient and the health care professional to the question 'what is the most important to you?'may help to implement patient centered care in health practice.

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.

Building a Tailored, Patient-Guided, Web-Based Self-Management Intervention 'ReumaUitgedaagd!' for Adults With a Rheumatic Disease: Results of a Usability Study and Design for a Randomized Control Trail.

BACKGROUND: The chronic nature of rheumatic diseases imposes daily challenges upon those affected and causes patients to make daily decisions about the way they self-manage their illness. Although there is attention to self-management and evidence for the desirability of tailored interventions to support people with a rheumatic disease, interventions based on individual needs and preferences are scarce. OBJECTIVE: To provide a systematic and comprehensive description of the theoretical considerations for building a Web-based, expert, patient-guided, and tailored intervention for adult patients with a rheumatic disease. Also, to present the results of a usability study on the feasibility of this intervention, and its study design in order to measure the effectiveness. METHODS: To fit the intervention closely to the autonomy, needs, and preferences of the individual patient, a research team comprising patient representatives, health professionals, Web technicians, and communication experts was formed. The research team followed the new guidance by the Medical Research Council (MRC) for developing and evaluating complex interventions as a guide for the design of the intervention. RESULTS: Considerations from self-determination theory and a comprehensive assessment of preferences and needs in patients with a rheumatic disease guided the development of the Web-based intervention. The usability study showed that the intervention was useful, easy to use, and accepted and appreciated by the target group of patients. The planned randomized controlled trial is designed to be conducted among 120 adults with a rheumatic disease, who are assigned to the self-management intervention or a self-help control group. Both groups will be asked to formulate personal goals they want to achieve concerning their self-management. Progress toward the personal goal is the primary outcome measure of this study. Self-reported Web-based measures will be assessed before randomization at baseline, and 3 and 6 months after randomization. Also, feasibility and adherence to the Web-based self-management intervention as process outcomes will be evaluated. CONCLUSION: By identifying the individual goals at the beginning of the intervention and customizing the intervention to the individual patient, we aim to improve the usefulness and effectiveness of the Web-based self-management intervention. If proven effective, ReumaUitgedaagd! Online will be implemented in the Netherlands.

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.