Patient organisations can encourage patients to learn about their disease and take an active role in shared decision-making, says EULAR taskforce.
Patient organisations are an under-utilised tool that can help boost patient education and self-management, according to experts at the recent EULAR congress.
Each year the alliance launches multiple recommendations for the wider rheumatology community to consider, and in 2021, these included the implementation of self-management strategies in patients with inflammatory arthritis.
Speaking at the congress, Dr Elena Nikiphorou, a rheumatologist/researcher at King’s College London, emphasised the importance of shared decision-making for the practical, physical and psychological aspects of care.
She said that by helping patients understand their disease, patient organisations could encourage them to take an active role in shared decision making and self-management.
However, the taskforce identified a general lack of acknowledgement among healthcare professionals of the benefit provided by some patient organisations.
“Patient organisations often provide valuable self-management resources, and collaboration between healthcare professionals and patient organisations will therefore benefit patients,” Dr Nikiphorou said.
The taskforce’s nine recommendations for implementing self-management strategies were:
- Healthcare professionals should encourage patients to become active partners of the team and make them aware of healthcare professionals and patient organisations involved in all aspects of the care pathway.
- Patient education should be the starting point and underpin all self-management interventions.
- Self-management interventions that include problem solving, goal setting and, where relevant to the individual and available, cognitive behavioural therapy, should be incorporated into routine clinical practice to support patients.
- Healthcare professionals should actively promote physical activity at diagnosis and throughout the disease course.
- Lifestyle advice based on evidence should be given to better manage common comorbidities and patients should be guided and encouraged by their healthcare team to adopt healthy behaviours.
- Better emotional wellbeing leads to better self-management; therefore, mental health needs to be assessed periodically and appropriate intervention made if necessary.
- Healthcare professionals should invite discussion with patients about work and signpost to sources of help where appropriate or where needed.
- Digital healthcare can help patients to self-manage and should be considered for inclusion in supported self-management where appropriate and available.
- Healthcare professionals should make themselves aware of available resources to direct patients to as part of optimising and supporting self-management.
Chair of the EULAR advocacy committee Professor Loreto Carmona told Rheumatology Republic the self-management recommendations were one of the most significant topics among the many recommendations this year.
“They are novel in our field and there was a clear need to have some clarity in this topic and to set the basis for its implementation in clinical practice,” said Professor Carmona, who is also the scientific director of the Instituto de Salud Musculoesquelética in Spain.
