A team of investigators, led by Petra Borsje, Msc, National Association ReumaZorg Nederland, Patientexpert and Coordinator at the Department of Patient participation and Communication, Nijmegen, Netherlands presented research at the European Alliance of Associations for Rheumatology (EULAR) 2022 on how to maintain quality of life after rheumatic and musculoskeletal disease (RMD) diagnosis.
The research focused on the development of conversation aids for individuals living with rheumatic and musculoskeletal disease to enhance awareness around prominent challenges patients encounter. Then, the aid can serve as a guide to address and cope with these aspects of the disease with an RMD professional.
Research has shown that those living with these conditions usually don’t realize that they can speak with a provider about the various ways the disease impacts their life. The challenges are actually important to consider when discussing treatment options with a professional.
Investigators also noted that RMD professionals don’t account for the priorities of a patient sufficiently when it comes to treatment. It’s understood that when a patient and provider make these decisions together, they are better informed and more likely to adhere to their medication.
The Review Process
A conversation aid can assist both patients and providers during an RMD consultation to achieve better outcomes. A review was designed to include all the important aspects of life for a patient with RMD. The starting point was formed with outcome measures of ICHOM for inflammatory arthritis and hip- and knee osteoarthritis.
Additional outcomes measured in Dutch RMD apps and hospital patient dashboards supplemented the review. A survey was developed from the list of outcomes and was then completed by Dutch patients with RMD.
The final step consisted of the complete list including important outcomes that were then discussed with the Dutch rheumatology department of the Bravis Medical Centre. From that, a first draft of the conversation aid was created and evaluated by patient partners of the National Association ReumaZorg Nederland (RDN) and the Bravis Medical Centre.
Aiding Conversations Around Rheumatic & Musculoskeletal Disease
Investigators developed a total of 4 conversation aids, each addressing a primary category of patient challenges–disease, daily activity, lifestyle, relationships and well-being. The main categories were further divided into 5 sub-categories.
- Disease activity; pain; fatigue; medication & side effects; and knowledge about the disease.
- Daily activity
- Work/school; personal care; household & family; mobility; and spare time
- Activity; food; stress & relaxing; smoking; and weight.
- Relationships and well-being
- Social contacts; intimate relationships, pregnancy & wish for children; incomprehension; loneliness; and gloom.
An additional conversation aid consisting of helpful “tips and tricks” was created to easily facilitate conversations between patient and provider to advance shared decision making.
The team of investigators concluded that the consultation aids can elevate communication around rheumatic and musculoskeletal disease, therefore promoting shared decision-making between individuals living with a disease and their RMD provider.