Non-pharmacological treatment of symptoms in systemic sclerosis patients: Guideline

Recommendations on patient education and treatments for systemic sclerosis patients with fatigue

Patient Education

• Persistent fatigue can have far-reaching consequences for activities of daily living and social participation. It is therefore essential that all patients with SSc who report symptoms of fatigue are properly informed about measures that support self-management skills.
• All SSc patients who report fatigue should receive patient information about the following aspects.
• Maintaining good physical condition and regular exercise
• Principles of energy conservation and good sleep hygiene
• Relaxation exercises
• A healthy diet
• The possible link between fatigue and drug side effects

Treatment

• Psychoeducational interventions (individually or in a group) aimed at principles of goal setting, energy conservation, dealing with the social environment and relaxation should be offered to SSc patients with fatigue. These interventions can be performed by a skilled health professional, e.g. a nurse, social worker or occupational therapist.
• CBT under the supervision of a psychologist should be offered to SSc patients with fatigue, if there are severe impediments to activities of daily living.
• Participation in available online and face-to-face courses with fellow patients, provided by trained patient representatives: e.g. ReumaUitgedaagd! (self-management training for people with rheumatism) should be offered to patients with SSc with fatigue.
• In order to maintain the ability to work, SSc patients with fatigue should be guided in adapting the work environment or switching to different work by a skilled health professional, e.g. an occupational therapist or social worker.
• SSc patients with fatigue should receive support to improve exercise capacity and incorporate more physical activity into daily life with the guidance of health professionals such as physical therapists.
• Advice about a healthy diet and preventing malnutrition offered by e.g. a dietician should be offered to SSc patients with fatigue.
• A multidisciplinary rehabilitation program should be offered to SSc patients with severe fatigue symptoms that lead to problems in several domains of activities of daily living.

Recommendations on patient education and treatments for systemic sclerosis patients with hand function loss

Patient Education

• Provide patient education and advice to all SSc patients with hand function loss to enhance their knowledge about treatment options and promote self-management. The patient education and advice should be tailored to the individual patient but should contain the following aspects.
• Independently and regularly doing hand exercises to maintain hand mobility and strength
• A continuous use of hands in activities of daily living to maintain hand functionality.
• Avoiding cold and keeping the hands warm.
• Good hand care, for example by moisturizing the skin (especially with lanolin-based products) and wearing protective gloves.

Treatments

• Passive and active hand function exercises to promote hand mobility, functionality and strength, under the guidance of a skilled health professional (e.g. a hand therapist), should be offered to SSc patients who experience restrictions in the performance of daily activities due to hand function loss.
• Learning ergonomic measures under the guidance of a health professional such as an occupational therapist should be offered to SSc patients who experience restrictions in the performance of daily activities due to hand function loss.
• The adaption of hobbies and work (including volunteer work) to enable participation in meaningful activities of daily living, under the guidance of a health professional, e.g. a social worker or occupational therapist, should be offered to SSc patients who experience hand function loss.
• A multidisciplinary rehabilitation should be offered to SSc patients with hand disabilities that lead to problems in multiple domains of activities of daily living.

Recommendations on patient education and treatments for systemic sclerosis patients with RP and/or digital ulcers

Patient Education

• All SSc patients with problems due to Raynaud's phenomenon and/or digital ulcers should receive patient education about the following aspects.
• Quitting smoking.
• Avoiding triggers that can elicit an attack of Raynaud's, such as sudden changes in temperature, drinking large amounts of coffee or energy drinks, and stress.
• Practical advice for protection against cold and avoiding temperature differences -- se of special clothing, silver gloves, heated gloves, or heating pads; rying the skin thoroughly after showering or washing hands; avoiding contact with cold objects (wearing gloves to remove items from the fridge/freezer, using a heated keyboard and mouse).
• Wearing fingertip protection (e.g. thermoplastic material or neoprene) to prevent pain when performing actions that cannot be avoided.
• Preventing infections and wounds through good hygiene, avoiding bruising and hazardous work, and using gloves for protection.
• Pomoting good blood circulation through the use of a stress ball and having sufficient exercise throughout the day.
• Avoiding prolonged, static postures.
• In SSc patients with digital ulcers, attention should also be paid to the following aspects.
• hydration of the skin around the ulcers with products based on lanolin, petroleum jelly or cetomacrogol.
• avoiding frequent exposure to water with aggressive cleaning agents.
• avoiding finger punctures.
• avoiding manipulation of ulcers (e.g. by squeezing out calcium deposits or cutting away hard skin).

Treatments

• Exercise therapy (with an arm bicycle) to promote general blood circulation and support the integration of exercise activities in daily life, guided by a health professional (e.g. a physiotherapist), should be offered to SSc patients with Raynaud's phenomenon/digital ulcers.
• PIn case of vasculopathy of the feet, advice about suitable, non-restrictive footwear (for indoor and outdoor use), by a health professional such as, for example, a podiatrist, should be offered to SSc patients.
• Advice on the protection of the fingertips with special gloves or by using adaptive devices, provided by a health professional (e.g. an occupational therapist), should be offered to SSc patients whose activities of daily living are restricted due to Raynaud's phenomenon/digital ulcers.

Reference:

Juliane K Stöcker, Anne A Schouffoer, Julia Spierings, Marisca R Schriemer, Judith Potjewijd, Lian de Pundert, Frank H J van den Hoogen, Maria W G Nijhuis-van der Sanden, J Bart Staal, Ton Satink, Madelon C Vonk, Cornelia H M van den Ende, on behalf of the Arthritis Research and Collaboration Hub study group, Evidence and consensus-based recommendations for non-pharmacological treatment of fatigue, hand function loss, Raynaud's phenomenon and digital ulcers in patients with systemic sclerosis, Rheumatology, 2021;, keab537, https://doi.org/10.1093/rheumatology/keab537