Background/Purpose: Systemic Sclerosis (SSc) is characterized by disfigurement, morbidity, and increased mortality. The diagnosis carries significant psychosocial impact on patients, and many suffer with depression, anxiety, and body image distress. Interventions to address this impact are recommended as an essential aspect of care. However, previous studies identified mental health care as an unmet need for many SSc patients. Using a qualitative approach, this study aimed to evaluate perceived barriers to mental health care in SSc.

Methods: A qualitative study was conducted in a sample of consecutive SSc patients presenting to a single center. After obtaining informed consent, one-to-one interviews were conducted in-person using open-ended questions on individual patients’ experience with SSc and barriers to mental health care. Demographic and clinical data were obtained to characterize the study sample. A grounded theory approach was used to code interview transcripts and identify emergent concepts, categories, and themes. Interviews were continued until data saturation was reached.

Results: Twenty SSc patients with a median (range) age of 56.5 years (21-74) and disease duration of 4.5 years (1-34) were interviewed. 100% were female, 55% were white, 60% had private insurance, and 70% had diffuse SSc. Patients reported multiple psychological symptoms in association with SSc including sadness, anxiety, anger, uncertainty, and suicidal ideations at the time of diagnosis. Interview analysis identified four major themes relating to barriers to mental health care; patient-related, physician-related, system-related, and disease-specific factors (Figure 1). Patient-related factors included stigma about mental illness, avoidance of symptoms, fear of being vulnerable or burdening others, fear of other’s reaction, and lack of need due to available coping mechanisms. Lack of physicians’ rapport, empathy, and interest in emotional symptoms, and their subspecialty (non-mental health) emerged as barriers. System-related factors included high cost, lack of insurance, division within the healthcare system, and limited access and appointment time. Patients identified disease severity, physical limitations due to SSc, poor understanding of disease process, paucity of effective treatments, lack of SSc-specialized mental health services, and the numerous SSc-related appointments as barriers. The heterogeneity of SSc, variable patient experiences, and fear of contact with other patients with more aggressive disease were barriers to SSc group therapy.

Conclusion: In addition to the known barriers to mental health care such as access, cost, and stigma, SSc patients also identified disease-specific barriers. Identifying, understanding, and addressing these barriers are important for the effective dissemination of psychosocial interventions in this unique patient population.  

Figure 1. Conceptual framework