‘Unmet need’ for information, emotional support exists with patients with dcSSc

Patients with diffuse cutaneous systemic sclerosis had high treatment and emotional burdens and an unmet need for information at the time of diagnosis and emotional support, according to a recently presented study.

Researchers Dinesh Khanna, MD, and colleagues recruited 23 patents with diffuse cutaneous systemic sclerosis (dcSSc). Seventeen patients from France, Italy, the United Kingdom and the United States filmed daily video diaries about 15 minutes long about their lives for 7 days. Patients participated in a moderator-led discussion on days 1 and 7 related to patient experiences and impacts of living with dcSSc. Six patients from Germany and Spain participated in a 60-minute telephone interview and assigned tasks that may encourage reflection about experiences living with dcSSc.

Dinesh Khanna

Analysis of the information showed that delays in diagnosis were common and patients tended to trivialize symptoms while health care providers may attribute symptoms to other causes. Upon diagnosis, most patients had a poor understanding of the disease and informational aids were rarely provided.

A high treatment burden was associated with dcSSc and patients received an average of 10 tablets of medication per day. Skin changes, pain and fatigue were commonly reported to have an effect on daily life. Loss of mobility and deformity resulted from skin tightening in the lower limbs of some patients, and significant pain was experienced from Raynaud’s syndrome, calcinosis and digital ulcers. Dental hygiene and ability to eat were affected by skin tightening around the mouth and embarrassment, loss of identity, withdrawal from social life and depression resulted from changes in appearance.

“Patients experience dcSSc as a series of losses, including independence and self-esteem, and the unpredictability of the disease makes the patient journey and acceptance of the condition difficult,” the researchers wrote. “Moreover, patients tend to have small support networks and support services are not offered as part of standard care.” - by Shirley Pulawski

Reference:

Khanna D, et al. Paper #62. Presented at: American College of Rheumatology Annual Meeting; Nov. 7-11, 2015; San Francisco.

Disclosure: Khanna reports the receipt of funding from Bristol-Myers Squibb, EMD Serono, Genentech, Bayer, Biogen Idec, Cytori, EMD Serono, Forward, Gilead, Lycera, and Seattle Genetics. Please see the full study for a list of all other authors’ relevant financial disclosures.