Background The involvement of patients in health research is increasingly accepted and promoted, as a significant aspect of ensuring the development of high quality, relevant and necessary research. In line with this development, a number of representatives from regional associations for patients with rheumatic diseases in The Netherlands expressed their need for a self-management tool. Patients with rheumatoid arthritis (RA) deal with multiple treatments and healthcare providers during the course of their disease. A care booklet can support effective self-management by providing information and tools to enhance their active participation in the process of care.
Objectives The aim of this project was, by means of a joint endeavour including patients, researchers and health care providers to systematically develop a care booklet, to support RA patients in coping with their disease and treatment.
Methods The “RA Care Booklet” was developed in multiple stages, which included: a. determining objectives and functionalities within a project team of researchers and patients; b. professional photography, graphic design and text editing; c. composing draft versions; and d. consultation with stakeholders about the initial set up and draft versions. For the consultation 10 patients, 4 rheumatologists and 5 clinical nurse specialists were asked in multiple rounds for written feedback.
Results The following objectives were determined: 1. Providing a source of information on RA and self-management of RA and 2. Providing tools for self-management. The functionalities of the latter were: recording of current medication, medical history and health care providers, monitoring disease activity and symptoms, points to consider for upcoming consultations with health care providers and goal setting. Given these requirements, a first draft of the “RA Care Booklet” was developed, consisting of two parts: the “RA Care Booklet” and the “RA Care Pass”. Photographs, graphic design and text editing for the booklet and pass were executed by professionals, with consultation of the project team. Stakeholders were consulted about multiple draft versions. Adjustments in text and graphics led to a final version of the “RA Care Booklet”.
The “RA Care Booklet” provides information about RA, living with RA and self-management of RA. In the “RA Care Pass” patients can describe personal information about their disease and treatment. A systematic evaluation of the use and usability of the “RA care booklet” is being undertaken.
Conclusions This project illustrates the added value of joint collaboration of patients, researchers and health care providers. The active involvement of patients in the initiation and execution of the project assured that the perspective of patients was optimally taken into account resulting in a care booklet tailored to the preferences and perceptions of RA patients about the disease and options of self-management.
Acknowledgements This project was financially supported by the Dutch Arthritis Foundation (Reumafonds)
Disclosure of Interest None declared