J. Ammerlaan

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 patients 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.

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

BackgroundBased 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.MethodsFeasibility 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.ResultsTwenty-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.ConclusionsBoth 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.

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 ones 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.

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.

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.

BackgroundThe 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.MethodsA 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).ResultsItems 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.ConclusionsThe 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.

Patient education to adults with rheumatic diseases through the internet: a valuable example

Self-management is an important part in the treatment of chronic conditions, such as rheumatism. Interventions to promote self-management behavior are not always used. One of the reasons is the lack of active involvement of the end user in the development process. Also a theoretical underpinning of the intervention itself is often missed. At the Department of Rheumatology and Clinical Rheumatology of the University Medical Center Utrecht, an online self-management training for adults with a rheumatic disease is being developed in close cooperation with the Dutch Arthritis Foundation. People with rheumatism, as patient partner, have a major role in development and research. As theoretical framework, the Medical Research Council [1] is used. An important element in this framework is a needs assessment among the end-users. For this, a qualitative research was recently conducted by Facebook and Concept Mapping. The next step is to build the training. After that, a feasibility and effectiveness study will follow. Learning experiences During this session, the participant will: – gain insights into the different steps we have taken; – learn more about the fundament of the online training; – gain awareness of the importance of involving the patient in development and research; – get a sneak preview of the new online training. Reference Craig P, Dieppe P, Macintyre S, Michie S, Nazareth N, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ 2008;377:979-983. Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.6199

THU0465-HPR Patients’ expectations and needs with regard to rheumatology nursing care: Results of multi-centre focus group interviews

Background The contribution of nurses to rheumatology care is increasingly recognised. Therefore, international efforts have been made to emphasise and optimise the role of the nurse [1]. However, evidence for the value of nursing interventions to outcomes is still limited, and discussions within countries about funding, legal regulations and the position of nurses is going on. Moreover, patients’ needs and expectations can offer valuable information for care improvement and should be taken into account whenever efforts for improvement are made. Objectives The development of further evidence for rheumatology nursing care is needed and an international research agenda has been formulated [1]. In the Netherlands, a task force from the Dutch Rheumatology Nurses Society aimed at defining priorities for a national research agenda, taking specific Dutch problems but also the international agenda into account. During the first meeting of the task force, patients’ needs and expectations were considered pivotal and should be the starting point of defining priorities. Therefore, it was decided to start with the assessment of patients’ opinions as a basis for the development of the national research agenda. Methods Patients between 18-90 years with chronic inflammatory arthritis from three medical centres in different regions in the Netherlands were invited to participate in focus group interviews and asked about their expectations and needs with regard to rheumatology nursing care. The interviews were transcribed verbatim and independently analysed by the task force members. In a consensus meeting, the emerging subjects were categorised in themes. The transcriptions of the interviews were sent to the participants for validation and comments. In a fourth interview, in an other medical centre, the found themes were verified. Results Twelve patients participated in the first three groups and eight in the fourth group, 15 females and 5 males in total. Eighteen patients had a diagnosis of rheumatoid arthritis and two had ankylosing spondylitis. Mean age was 56.6 (SD 12.7) years and mean disease duration was 14.8 (SD 11.7) years. The main themes revealed in the focus group interviews were the importance of education, information, support and counseling by nurses. Patients considered accessibility of nurses and nurses’ “personality”, e.g. nurses are easy to talk with, communicate in an understandable way and are empathic, important. Conclusions The focus group interviews yielded valuable information. The found themes will support the development of a questionnaire to be used in a survey among a large group of patients with inflammatory arthritis in the Netherlands. The results of the survey will serve as basis for the patient-centred nursing research agenda, which can contribute to evidence-based nursing care and to improvement of quality of care. References van Eijk-Hustings Y, et al., EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis. Ann Rheum Dis, 2012. 71 (13-19). Disclosure of Interest None Declared

THU0578 The Patient’s View on Rheumatology Nursing Care: Results of a Survey

Background In order to minimise differences in rheumatology nursing care across countries and regions, recommendations for the role of the nurse have been developed (1). However, patients should be directional in defining the content of good quality care. Therefore, their expectations and needs were explored in focus groups. 4 main themes were categorised: education, self-management support, emotional support and well-organised care. Objectives The objective of the present study was to explore 1) the importance of the themes among a larger group of patients 2) patient satisfaction with the care that is provided and 3) patients’ preferences for methods of care delivery. Methods Dutch patients were invited to participate in a web-based survey. The survey presented topics for each theme. Patients had to select the most appropriate answer. For each topic, patients had to select 1 out of 5 categories for importance (not at all/somewhat no/somewhat yes/very/do not know). Regarding education, patients also had to give their satisfaction, by whom they would like to receive care and by what method. Results In total 475 patients, with systemic inflammatory diseases such as RA (76%), and other disorders such as OA (24%), filled in the questionnaires. Mean age was 56 years, mean disease duration was 13 years, and 72% were female. The topics of most importance are presented in the table. Conclusions The survey yielded valuable information about the importance of topics for education, self-management support, emotional support and care organisation but also about patients’ opinions about care delivery. The results can support monitoring of the quality of care from a patient’s perspective. References van Eijk-Hustings Y, van Tubergen A et al. EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis. Ann Rheum Dis. 2012;71 (13-19). Acknowledgements We would like to thank our patient research partners for their valuable contribution to this study. Disclosure of Interest None Declared