Data from a large international group of scleroderma found that only 18% of participants affected by the disease received mental health services for a period of 3 months, most of which were provided by a general practitioner.
According to the Canadian Scleroderma Research Group Registroy, approximately 23% of patients with scleroderma experience severe depressive disorder throughout their lives, which is undoubtedly associated with significant morbidity and high mortality rates associated with the disease.
Similarly, the limitations in the availability and efficacy of pharmacotherapies have contributed to the myriad psychological and emotional consequences of scleroderma. As such, tackling the psychosocial problems of those affected by the rare disease is 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 led by Karima Becetti, PhD from Weill Cornell Medicine-Qatar, tried to determine the number of participants enrolled in the Patient Intervention Network (SPIN) group who used mental health services to 3-month period. while interpreting the demographic, psychological and disease-specific factors associated with the use of these services.
Determining the use of mental health services
The SPIN cohort includes participants from more than 45 centers in the United States, Canada, the United Kingdom, France, Spain, Mexico and Australia. Eligibility for the study requires all participants aged 18 and over to meet the 2013 American College of Rheumatology / European League Against Rheumatism classification for scleroderma. Questionnaires were then published in several languages.
The current survey consists of participants who completed the relevant questionnaires from January 2014 to May 2020.
After the questionnaires and gathering demographic information, participants were asked “Have you seen any of the following health professionals in the last 3 months to deal with mental health problems?” Before ticking the box for all answers that relate. for them, including a psychiatrist, psychologist, general practitioner or family doctor or “others”. Participants were also asked how many times they used these services during the 3-month period.
From there, participants completed questionnaires assessing symptoms of depression, anxiety and stress on body image, including the Patient Health Questionnaire (PHQ-8), the Patient Outcome Information System-29 (PROMIS-29v2) and the Satisfaction Scale for appearance (SWAP).
The Chronic Disease Management Self-Effectiveness Scale (SEMCD) was also used to determine participants’ confidence in self-managing scleroderma despite fatigue, physical discomfort, and emotional stress.
A total of 2,319 SPIN cohort participants were included in the study, the majority of whom (36%) came from the United States. The majority of participants in the cohort are women (88%) and whites (81%), and the average age is 54 years.
Among these participants, only 18% (417) used mental health services in the 3 months before enrollment, and 37% (153) received these services from more than 1 type of provider.
General practitioners are the most common providers of mental health services (59%), followed by psychologists (25%) and psychiatrists (19%).
Following a multivariate analysis, the use of mental health services is independently linked 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 scores on anxiety symptoms (OR 1.04) and -low self-efficacy scores (OR 0.90, 95% CI 0.8). -0.97).
The researchers suggest that additional studies may examine the factors identified in their study, in addition to the rate of use of mental health services in patients with scleroderma and the clinical diagnosis of major depressive disorder or other mental health disorders.
“The effects of these services on this unique patient population are also important to explore in future research,” the team wrote.
The study “Use of mental health care and related factors in systemic sclerosis: a cohort study of the scleroderma patient-centered intervention network” has been published online in ACR Open Rheumatology.