Patients with early diffuse cutaneous systemic sclerosis (dcSSc) endure high levels of disability, fatigue and pain, finds a new study that urges doctors to assess them “from a multidisciplinary point of view.”
Although a 2011 Canadian study had looked into the the role of pain, fatigue and limited hand function in systemic sclerosis (SSc), it offered no conclusions on the diffuse cutaneous subtype of the disease.
The newer report, “Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study,” appeared in the journal Rheumatology.
Its authors recommend evaluating “each patient’s need for multidisciplinary input including physiotherapy, occupational therapy and pain management, to minimize the impact on the individual.”
The ESOS study (NCT02339441) assessed disability, fatigue and pain in 326 patients at 50 clinics in 19 countries. Recruited between July 2010 and September 2014, the patients enrolled in ESOS at baseline, 12 and 24 months. Researchers used standard questionnaires to assess them.
The HAQ disability index includes parameters such as dressing, rising, walking, hygiene and grip. The Cochin Hand Function Scale (CHFS) includes questions that measure daily manual activity.
Of the 18 activities assessed by the hand function questionnaire, picking up coins, peeling fruit and buttoning a shirt — all activities involving fine finger movements — had the highest mean difficulty. Squeezing a new tube of toothpaste, pricking things with a fork and holding a bowl — activities requiring less dexterity — had the lowest mean difficulty.
The FACIT scale assesses patients’ fatigue over a week, while the SF36 questionnaire measures quality-of-life issues like bodily pain, vitality and mental health.
The study found that all patients had high levels of disability. Furthermore, skin thickening in dcSSC patients (as assessed by the modified Rodnan skin score; mRSS) was linked with disability (as assessed by HAQ and CHFS) at baseline and over a 12-month period from baseline. This included patients reporting stiffness and pain in their hands.
Disability and fatigue were both linked to internal organ involvement, while pain was associated with the degree of skin thickening.
“The European Scleroderma Observational Study highlights the burden of disability in early dcSSc, with high levels of disability and fatigue, associating with the degree of skin thickening (mRSS),” researchers wrote. “Impaired hand function is a major contributor to overall disability.”
Based on these observations, the team suggests that “clinicians need to be aware of this huge burden of disability, and recognize each patient’s need for multidisciplinary input including physiotherapy, occupational therapy and pain management, to minimize the impact on the individual.”
According to the team, ideally all patients with early dcSSc should be referred as soon as possible to a skilled multidisciplinary team.
“In conclusion, the message of our analysis is straightforward: early dcSSc is disabling, fatiguing and associated with severe compromise in hand function and with pain,” the researchers wrote. “As options for treating the life-threatening organ-based complications improve, the non-lethal burden is likely to require increasing attention for therapy. Pending the development of effective treatments to prevent or reverse progression of this devastating disease, clinicians need to be aware of this huge burden of disability.”