FRI0270 Patient Perception of Disease Burden in Diffuse Cutaneous Systemic Sclerosis (DcSSc)

BackgroundDcSSc is associated with high morbidity and mortality, and reduced quality of life. Patient priorities are rarely discussed, with physicians focusing on organ involvement. Using discursive approaches and ethnography, we evaluated the impact of dcSSc on patients' daily lives, and examined how disease burden shapes patient outlook.MethodsPatients were recruited via healthcare professionals (HCPs) or patient associations. In France, Italy, the UK and USA, patients filmed short (∼15-minute) daily video diaries about their lives over 7 days. On Days 1 and 7, patients participated in a moderator-led discussion of their experiences, and an observation session. In Germany and Spain, patients participated in 60-minute telephone interviews. Video footage and transcribed discussions were reviewed, and the data were categorized and assessed for themes, patterns, and indicators of emotion, ambivalence, and conflict.ResultsTwenty-three patients (mean age 54 years; 83% women) participated. Of these, 17 made video diaries, and 6 took part in telephone interviews. The majority of video diaries and interviews took place in patients' homes; on average 5.25 hours of video footage were collected per patient.Results show that time to diagnosis was often delayed, as patients trivialized symptoms and HCPs attributed symptoms to other causes. Patients had a poor understanding of their diagnosis, and rarely received patient information. DcSSc patients had a high treatment burden; on average this patient sample received 10 tablets of prescribed drugs daily. Importantly, while patients were aware of the seriousness of organ involvement, they reported that skin changes, pain, and fatigue had a dominant effect on daily life, impairing their ability to perform routine tasks. Skin tightening in the lower limbs and feet lead to deformity and loss of mobility, while Raynaud's phenomenon, calcinosis, and digital ulcers caused significant pain and loss of function. Changes in appearance lead to embarrassment, social withdrawal, and depression. Patients experienced dcSSc as a series of losses, including independence and self-esteem, and the unpredictability of the disease made acceptance of the condition difficult (Figure 1). Moreover, patients tended to have small support networks and support services were not offered as part of standard care.ConclusionsPatients with dcSSc had high treatment and emotional burdens, with skin complications, pain, and fatigue profoundly affecting thei