EULAR publish new recommendations for non-pharmacological management in Systemic Sclerosis

Systemic sclerosis (SSc) is a rheumatic autoimmune disease which can have a major impact on the quality of life of patients living with the condition. New therapies are promising, but there is still a need to improve and optimise how the disease is managed to improve the lives of patients.

Non-Pharmacological Interventions in SSc

Alongside drug treatments, there is also a need to incorporate non-pharmacological and self-management strategies into the care of those living with SSc. Non-pharmacological interventions are non-drug approaches to managing a condition, ranging from patient education and self-management strategies, to exercise, lifestyle changes, counselling, treatments such as acupuncture and hydrotherapy, and minor surgical procedures. 

Non-pharma management approaches aim to ease disease symptoms and improve quality of life, or help to prevent a patient’s condition from worsening. Many of these treatment options may be of help to people living with scleroderma, but they are currently underused in clinical practice and do not form part of the standard care patients receive.  

Who are EULAR?

EULAR – the European Alliance of Associations for Rheumatology – gives advice to doctors, nurses, and patients about the best way to treat and manage diseases. In 2023, EULAR developed new recommendations regarding non-pharmacological management of Systemic Lupus Erythematosus (SLE) and Systemic Sclerosis. These recommendations were developed by working with healthcare professionals, and patients living with these conditions.  

What do EULAR’s recommendations suggest?

EULAR’s recommendations contain advice applicable to people with systemic sclerosis, along with a more general set of recommendations applicable to those with SSc and SLE. These recommendations cover aspects such as patient education and self-management, behaviour change such as stopping smoking and cold avoidance, and the inclusion of an appropriate level of physical exercise or physical activity such as physiotherapy.  

The principle behind these recommendations is that non-pharmacological management approaches should not replace drug treatments but should instead be offered to enhance patient care. These non-drug interventions should be tailored to individual patient needs, expectations, and preferences, and patients may try more than one non-pharma approach at a time to help manage symptoms. The recommendations state that the decision to pursue these should be a joint decision between the patients and their healthcare team.

For those with Scleroderma, EULAR recommend that patients:

• Should be offered education and advice about ways to improve hand and mouth related symptoms, as well as the ability to do everyday activities. In people with SSc, patient education and self-management support should be considered for improving hand function, mouth-related outcomes, health-related quality of life, and ability to perform daily activities. This might include home-based exercise, muscular endurance training, or stretching exercises for the hands. Or it could mean seeing a physiotherapist.
• Should consider mouth, face, and hand movements, as well as aerobic and resistance exercise. People with SSc can suffer from microstomia, which means that it is difficult to open their mouth. This and hand function are the major targets of non-pharmacological management for people with SSc. Mouth, face, hand, and aerobic and resistance exercise should be considered.
• Could be offered manual lymph drainage if they have puffy hands. If you have SSc, you might get fluid retention or oedema in your hands. If you have puffy or swollen hands, light, skin-stretching massage can help to move lymphatic fluid back out.

To read the rest of the EULAR guidelines, including recommendations that relate to the management of both SSc and SLE, you can access the full recommendation paper or a shorter summary below: