Mapping the complex everyday challenges and needs of people with rheumatic disease and their surroundings using a multi-actor approach.

Abstract

This study aimed to gain insight into the real-world complexity of the challenges experienced by patients, their significant others, care professionals and the work and education environment concerning rheumatic diseases as well as the interrelation between these challenges; it also aimed to prioritise the identified challenges. Using the Dialog Model, 21 people with various rheumatic diseases, 24 care professionals, 9 significant others, and 3 education and work representatives were asked about rheumatic disease-related challenges and needs in a series of focus groups and interviews. Data were inductively coded and analysed, resulting in a mind map thematically displaying the challenges. The mind map was translated into a survey, and respondents (N=1802) prioritised themes and challenges. Of the six identified themes, 'physical complaints' was prioritised the most, followed by 'collaboration in healthcare', 'social and mental wellbeing', 'self-management', 'information and options in healthcare' and 'work and education'. Challenges of people with rheumatic diseases appeared to be complexly interrelated. For instance, fatigue and pain affect everyday functioning, but can also heavily impact social and mental wellbeing. To facilitate support for these challenges, which many patients desire, patients and care professionals said that better collaboration between primary and secondary care professionals is needed. Additionally, patients felt that their experiential expertise deserves more acknowledgement from care professionals. Results were similar across different rheumatic diseases. Many patients desire more support to manage life with their disease. To facilitate this, collaboration and communication between healthcare professionals, and between healthcare professionals and individual patients, should be improved.