Data from a large international scleroderma cohort showed that only 18% of participants affected by the disease received mental health services within 3 months, most of which were provided by a general practitioner.
According to the Canadian Scleroderma Research Group’s Registroy, 23% of patients with scleroderma suffer from a major life-long depressive disorder, which is arguably associated with high disease-related morbidity and a high mortality rate.
The limitations of the usefulness and efficacy of pharmacotherapies have also contributed to the many psychological and emotional implications of scleroderma. Therefore, addressing the psychosocial concerns of those affected by rare diseases has been a major concern among patients and providers, especially given the limited data on the frequency of mental health services in this population.
With this study, researchers from Karima Becetti, MD, Weill Cornell Medicine-Qatar, sought to determine the number of participants enrolled in the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort who used mental health services within 3 months. also interpreting demographic, psychological, and disease-specific factors associated with the use of these services.
Determining the Use of the Mental Health Service
The SPIN cohort included participants from more than 45 centers in the United States, Canada, the United Kingdom, France, Spain, Mexico, and Australia. Eligible for study All participants 18 years of age or older had to meet the 2013 American College of Rheumatology / European League Against Rheumatism scleroderma classification. The questionnaires were then distributed in several languages.
The current study was completed by participants who completed appropriate questionnaires from January 2014 to May 2020.
After collecting questionnaires and demographic information, participants were asked “In the last 3 months, have you seen any of the following health professionals addressing a mental health concern?” including a psychiatrist, psychologist, general practitioner or family physician, or “others”. Participants were also asked how many times they had used these services within 3 months.
Thereafter, participants completed questionnaires assessing symptoms of depression, anxiety, and body image stress, including the 8-item Patient Health Questionnaire (PHQ-8), Patient Outcome Measurement Information System-29 (PROMIS-29v2), and Satisfaction. Appearance (SWAP) scale.
The self-efficacy (SEMCD) scale was also used to determine participants’ confidence in scleroderma self-management, despite fatigue, physical discomfort, and emotional distress.
The study included 2319 participants from the SPIN Cohort, the majority (36%) from the United States. The majority of cohort participants were female (88%) and white (81%), with a mean age of 54 years.
Of these participants, only 18% (417) used mental health services in the 3 months prior to enrollment, and 37% (153) received these services from more than 1 type of provider.
General practitioners were the most common providers of mental health services (59%), followed by psychologists (25%) and psychiatrists (19%).
After a multivariate analysis, the use of mental health services was independently related to higher education (odds ratio). [OR] 1.07, 95% confidence interval [CI] 1.03-1.11), smoking (OR 1.06), retirement (OR 0.60), limited scleroderma (OR 1.39), and higher anxiety symptom scores (OR 1.04) and self-efficacy having lower scores (OR 0.90, 95% CI 0.83). -0.97).
The researchers suggested that additional studies could explore the factors identified in their research, including the rate of use of mental health services by patients with scleroderma and the clinical diagnosis of major depressive disorder or mental health disorder.
“The implications of these services are also important for the study of future research in this particular patient population,” the group wrote.
The study, “Mental Health Care Use and Associated Factors in Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study,” was published online. ACR Open Rheumatology.