FRI0626-HPR DEVELOPMENT OF A TOOL TO SUPPORT PATIENT AND NURSE IN COMMUNICATING ON SELF-MANAGEMENT SUPPORT NEEDS PROJECT OF V&amp;VN RHEUMATOLOGY RESEARCH GROUP
Authors: A. J. L. Meier, Y. Van Eijk-Hustings, B. Maat
Journal: Annals of the Rheumatic Diseases (2020)

Background: Self-management, ability of patients to optimally integrate their illness or disorder into their daily lives, is explicitly part of the new definition of health. Self-management is considered essential in rheumatology care but is also a challenge for patients and rheumatology nurses. Often patients need support, but clarifying their support needs is difficult. Also, nurses experience difficulties in providing self-management support. A communication tool might help patients and nurses. Objectives: In preparation for development of an online self-management program, a framework comprising 55 needs from 11 different domains has been developed (1). The objective of this study is to develop a tool, based on this existing framework that can support patients and nurses in making targeted choices for adequate support. Methods: The tool was developed in two steps. First, it was explored if existing framework as such was useful as a basis for the tool. It was discussed in a brainstorming session with rheumatology patients and rheumatology nurses. Second, two additional workshops, one with patients and one with nurses were organised. In these sessions, yellow cards with 55 needs from the framework (1) were compared with a more generic framework for self-management support in chronic diseases: the self-management web (2), figure 1. Goal of the workshop was to gain insight into usability of models and to gauge the ideas for a tool. The choice for these two models was based on the scientific background as well as the use with patients with a chronic or rheumatic disease. Picture 1 : Workshop Results: In the first brainstorming session 5 patients and 5 rheumatology nurses participated. In the workshops, 11 patients and 130 nurses participated. Eligible adult patients, diagnosed with a rheumatic disease, were recruited by newsletter from the Dutch Arthritis Foundation. Nurses were recruited by newsletter from the Dutch Nurses Organisation (V&amp;VN). According to participants, the framework alone is only useable when additional explanation and illustration of concepts will be provided and following missing topics are added; communication between specialisms, knowledge of the healthcare system, responsibility allocation, faith, religion, culture, nutrition, lifestyle, prevention. The self-management web appeared to be helpful. Not all cards with needs could be placed in this web. It was suggested to add following topics to the web: Peer support or experience experts’ contact, handling treatment recommendations, patient empowerment, defining limitations and supporting services like physiotherapy and municipality. There is overlap between topics of the web: Lifestyle, leisure and self-care. It was suggested to place associated topics together or give the same colour. Practical ideas for application of the web and about involving an experienced expert were discussed as well as the role of health professionals. Integration in e-health, linked to the medical file with visual support is preferred. Patients have to prepare themselves for consulting the nurse or doctor. Communication plays a very important role for all elements. The tool should be usable for people with limited health literacy skills and nurses need skills like motivational interviewing for using the tool. Conclusion: Existing frameworks seem useful as a scientific basis for the development of a communication tool for self-management support. Usability of a draft tool will be explored in a pilot study. References: [1] Ammerlaan J. Preferences and needs of patients with a rheumatic disease regarding the structure and content of online self-management support. Pat Educ Counsel. 2017;100(3):501-8. [ 2] Been-Dahmen, J.M.J. (2018). Self-Management Support: A broader perspective on what patients need and nurses could provide. Disclosure of Interests: A.J.L. Meier: None declared, Yvonne van Eijk-Hustings Grant/research support from: grand from sanofi and UCB, Consultant of: fee from amgen, Bertha Maat: None declared