Abstract
BackgroundMental health disorders are common in youth with rheumatological disease yet optimal intervention strategies are understudied in this population. We examined patient and parent perspectives on mental health intervention for youth with rheumatological disease.MethodsWe conducted a mixed methods cross-sectional study, via anonymous online survey, developed by researchers together with patient/parent partners, to quantitatively and qualitatively examine youth experiences with mental health services and resources in North America. Patients ages 14–24 years with juvenile idiopathic arthritis, juvenile dermatomyositis, or systemic lupus erythematous, and parents of patients ages 8–24 with these diseases were eligible (not required to participate in pairs). Participants self-reported mental health problems (categorized into clinician-diagnosed disorders vs self-diagnosed symptoms) and treatments (e.g. therapy, medications) received for the youth. Multivariate linear regression models compared patient and parent mean Likert ratings for level of: i) comfort with mental health providers, and ii) barriers to seeking mental health services, adjusting for potential confounders (patient age, gender, disease duration, and patient/parent visual analog score for disease-related health). Participants indicated usefulness of mental health resources; text responses describing these experiences were analyzed by qualitative description.ResultsParticipants included 123 patients and 324 parents. Patients reported clinician-diagnosed anxiety (39%) and depression (35%); another 27 and 18% endorsed self-diagnosed symptoms of these disorders, respectively. 80% of patients with clinician-diagnosed disorders reported receiving treatment, while 11% of those with self-diagnosed symptoms reported any treatment. Patients were less comfortable than parents with all mental health providers. The top two barriers to treatment for patients and parents were concerns about mental health providers not understanding the rheumatological disease, and inadequate insurance coverage. Over 60% had used patient mental health resources, and over 60% of these participants found them to be helpful, although text responses identified a desire for resources tailored to patients with rheumatological disease.ConclusionSelf-reported mental health problems are prevalent for youth in this sample with rheumatological disease, and obstacles to mental health treatment include disease-related and logistic factors. Strategies are needed to improve acceptance and accessibility of mental health intervention, including routine mental health screening and availability of disease-specific mental health resources.
Highlights
Mental health disorders are common in youth with rheumatological disease yet optimal intervention strategies are understudied in this population
Over 60% had used patient mental health resources, and over 60% of these participants found them to be helpful, text responses identified a desire for resources tailored to patients with rheumatological disease
Self-reported mental health problems are prevalent for youth in this sample with rheumatological disease, and obstacles to mental health treatment include disease-related and logistic factors
Summary
Mental health disorders are common in youth with rheumatological disease yet optimal intervention strategies are understudied in this population. According to a 2015 survey of pediatric rheumatologists in the Childhood Arthritis & Rheumatology Research Alliance (CARRA), a collaborative research alliance which includes 90% of pediatric rheumatologists in North America, 52% of respondents reported inadequate mental health symptom identification and 45% reported inadequate treatment of depression and anxiety amongst their patients with cSLE [11]. These findings were echoed by a mixed methods study of behavioral health providers, who identified several gaps in mental health care for pediatric rheumatology patients, including lack of protocols for screening, intervention, and follow-up, a need for integration of mental health providers into medical care, and better access to peer support resources for patients and families [12]
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