Background
Patients with rheumatological diseases such as juvenile idiopathic arthritis (JIA), juvenile dermatomyositis (JDM), or childhood-onset systemic lupus erythematous (cSLE) may experience high psychological burden associated with their disease. Reported prevalence rates of depression and anxiety range from 15 to 65% [
1]. Mental health disorders are associated with adverse outcomes in these patients, including decreased quality of life, suboptimal medication adherence, increased disease activity and pain, and challenges with transition to adult care [
2‐
7]. Despite studies showing efficacy of mental health interventions in pediatric rheumatology patients [
8‐
10], it has been recognized that mental health problems are often underdiagnosed and untreated. 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].
Understanding patient and parent perspectives on mental health care is essential to assessing patients’ health status and service gaps [
13‐
16]. To our knowledge, there has only been one qualitative single center study looking at patient and parent perspectives on barriers and facilitators to addressing mental health needs in youth with rheumatological disease; it found that pediatric rheumatologists were perceived as a preferred source for mental health care referral and resources [
17]. Additionally, there is emerging recognition of the importance of patient and parent engagement in pediatric chronic disease research in order to maximize the relevance, quality, and acceptability of study findings [
18,
19]. Involving patients and families as members of the research team in the design, implementation and interpretation of studies (i.e. using a patient-engaged approach) is a valuable strategy for exploring sensitive topics such as mental health.
The objective of this study was to investigate patient and parent perspectives on mental health intervention for youth with rheumatological disease, using a patient-engaged approach. Specifically, we conducted a mixed methods study to: i) characterize experiences and perceptions about mental health services and resources for patients with JIA, JDM or cSLE, ii) identify perceived barriers to utilization of these services, and iii) compare patient and parent perspectives for these responses.
Discussion
To our knowledge, this is the largest study focusing on mental health needs for youth with rheumatological disease from the perspective of patients and parents, yielding several key findings to guide improvement of mental health intervention. First, our sample reported a high prevalence of mental health problems affecting the patients, including both clinician-diagnosed disorders and a notable proportion of self-diagnosed symptoms. While most patients with a clinician-diagnosed disorder had received mental health services, more than half with self-diagnosed mental health symptoms had not. Second, patients were less comfortable than parents with all mental health providers, and there was a greater discomfort with typical mental health providers (such as counselors/therapists, social workers, psychologists) for both groups. Additionally, key barriers to seeking mental health treatment for both patients and parents included concern about lack of disease understanding by mental health providers, and lack of adequate insurance coverage due to high cost of mental health services. Finally, although participants reported use of several helpful mental health resources, they desired more disease-specific resources to provide specialized and individualized support. These important insights provide several targets for improving mental health education and resource utilization, through collaborative relationships between youth with rheumatological disease, their families, medical and mental health providers. These targets are also aligned with those of the recent American Board of Pediatrics Roadmap Project (
https://www.abp.org/foundation/roadmap), which acknowledges the substantial mental health needs of patients and families with chronic pediatric health conditions, and endeavors to address these needs through development of mental health tools and resources.
Anxiety and depression were the most prevalent clinician-diagnosed mental health disorders amongst survey respondents at 39 and 35%, respectively, which are also the most prevalent mental health disorders in the general youth population at 8 and 20% [
30,
31]. Our findings are supported by other studies of youth with rheumatological disease [
4,
5,
7], and parallel reported depression and anxiety rates for other pediatric chronic disease populations [
32,
33]. We also expand understanding of the mental health burden for youth with rheumatological disease, as adjustment disorder, attention-deficit disorder, suicidal thoughts, and eating disorder were commonly reported. The high rate of reported mental health problems for youth with rheumatological disease underscores the need for routine mental health screening in this population, particularly because patients might not feel comfortable reporting their mental health symptoms to their parents or other care providers.
While it is encouraging that most (80%) of the patients with clinician-diagnosed mental health disorders were reported to have received treatment, the proportion was much lower for substantial group with self-diagnosed symptoms only, and most pronounced for patient vs parent report (11% vs 44%). Providing mental health education to youth with rheumatological disease may help increase perceived usefulness and benefits of mental health services. Our participants found online and print resources to be helpful, and educational resources are known to be a facilitator for youth seeking out mental health services [
34,
35]. Enhancing the ability of medical providers to communicate with patients about mental health may also promote acceptability and reduce stigma amongst patients who may be considering mental health care. Both patients and parents reported the highest level of comfort with rheumatologists and PCPs, likely due to the high level of trust and familiarity that these clinicians have with the rheumatological diagnosis [
17]. Yet, many of these medical providers may not be trained in mental health assessment and intervention; this represents a gap in care, for which efforts to provide primary care and pediatric subspecialty physician training have been initiated by the American Board of Pediatrics Roadmap Project [
36]. Additionally, as the majority of patients who received treatment had accessed psychotherapy/counseling and psychotropic medication through PCP and community services, our results highlight the importance of communication and partnership between PCPs and rheumatologists to facilitate mental health intervention for patients.
Patient and parent discomfort with social workers, psychologists, and counselors/therapists might be due to stigma surrounding receiving care from mental health providers [
37]. Stigma and label avoidance (unwillingness of those suffering from mental health conditions to label them as such) are well-described barriers to those with (or at risk for) mental health concerns in terms of accessing treatment options such as counseling and/or medication [
38‐
41]. Additionally, specific to the pediatric rheumatology context, a prior study found that patients have limited or no access to mental health providers in North American pediatric rheumatology clinics, and that these services are not typically presented as a standard part of comprehensive rheumatological care [
12]. This is supported by our findings that of those who used mental health resources for patients, only 22% of patients and 17% of parents had accessed a social worker. Although social workers may often be the most accessible of these providers, patients and families may be unaware of the role that they can play in facilitating and providing mental health resources, as many social workers believe that they are underutilized in this capacity [
12]. Increased availability of social workers, psychologists and counselors in the pediatric rheumatology setting, as well as integration and normalization of their services as a part of standard rheumatological care may increase both access and acceptance of mental health treatment. For example, in the United Kingdom, the national Standards of Care for Pediatric Rheumatology include recommendation for clinical psychologists to be core members of the multidisciplinary team, and the National Health Service of England requires formally commissioned tertiary level pediatric rheumatology care centers to have an embedded mental health professional [
42,
43]. These policies should be considered within the North America and other regions, as they are likely to increase familiarity of patients and parents with mental health providers, and improve trust and utilization of these mental health providers.
It is noteworthy that patients and parents were concordant in identifying the top two barriers to seeking mental health services; these were concerns about a lack of understanding by mental health providers about the rheumatological disease, and about lack of adequate insurance coverage. While the latter finding is a known general barrier from existing literature [
37,
44], the concern about lack of understanding of disease is particularly relevant to providing effective intervention to youth with rheumatological disease. These results suggest that even for those who can overcome insurance issues to access mental health services, there remains a need to address disease-specific issues within the course of mental health treatment. This finding was echoed in the text responses regarding mental health resources, with several respondents reflecting on the reduced helpfulness of such resources due to a lack of disease-specific content. These results indicate a clear need for affordable mental health care options that are also disease-informed, to address the nuanced mental health challenges faced by patients with rheumatological conditions. Interventions to address this need may include co-location of mental health providers in pediatric rheumatology settings, educational initiatives to improve community mental health provider knowledge of pediatric rheumatological conditions, and development of disease-specific peer support and informational mental health resources. Encouragingly, mental health resources for pediatric chronic disease patients and families are available from the American Board of Pediatrics Roadmap Project, and more are being developed, with acknowledgement that they may benefit from tailoring to specific diseases and individual patient needs.
Strengths & Limitations
The strengths of this study include the engagement of patients and parents in the survey design, which was critical to constructing survey items with language conducive to inquiring about the sensitive topic of mental health. Engagement of a patient advocacy group such as PARTNERS was also essential to optimizing the content, design, advertisement and distribution of the survey to reach a broad, national audience of patients and parents through social media and other approaches. Administration of a survey in both English and Spanish also aimed to increase representativeness.
This study also has limitations. First, since the survey responses were self-reported and anonymous, there is possibility of misclassification. We were not able to definitively confirm clinician diagnoses of rheumatological disease; however, we think that our sample represents the intended patient population, as reported medications were similar to expected, with treatment use in JIA participants approximating that in the large CARRA JIA Registry cohort [
29]. We were also not able to confirm reported mental health diagnoses, nor ask questions surrounding severity of reported mental health problems, due to lack of a mechanism to identify and appropriately refer participants posing potential harm to themselves or others; however, the prevalence of reported clinician-diagnosed mental health disorders is similar to other studies of pediatric rheumatology patients. Second, generalizability of our results to the larger pediatric rheumatology patient population may be limited by several factors, including: the skewed demographic of the sample (predominately white, educated, and high-income); limitation of the study to JIA, JDM, and cSLE participants in order to leverage the PARTNERS member organizations which are focused on these diseases; and potential enrichment of patients with more disease burden (e.g. JDM and cSLE patients), comorbidities, and mental health issues than the general pediatric rheumatology population. Furthermore, while our varied recruitment approach including clinic advertisements, email listservs, and social media allowed us to reach a wider audience, it made it impossible to calculate response rate and gather information about those who did not complete the survey, also limiting assessment of generalizability of our results. Third, although we adjusted for patient characteristics in our comparisons between patient and parent responses, we could not compare pairs of patient respondents and parents from the same family due to the anonymous survey approach. Fourth, while our stratification of patients into adolescents and young adults is generally relevant for availability of pediatric vs adult medical and mental health services, we may not have captured differences in mental health experiences for the subgroup transitioning to adult care in their early 20s. Last, while we included the perspectives from parents of patients as young as 8 years old, the mental and behavioral health needs of these younger children were not directly captured in this survey. Despite these limitations, our study provides important and much needed insight into the mental health needs of youth with rheumatological disease, from their own perspective and from their parents.
Acknowledgements
The authors sincerely thank the patients (Michael Napoli, Miranda Moyer, Rachel Adamski) and parents (Judy Barlin, Mitali Dave, Shannon Malloy, Shari Hume, Angela Chapson, Donna Napoli, Vincent Delgaizo) who participated as members of the study team, as well as all of the patients and parents who participated in this survey. The authors also wish to acknowledge the support and effort for this project from the Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS), including the Arthritis Foundation, the Cure JM Foundation, the Lupus Foundation of America, the Pediatric Rheumatology Care and Outcomes and Improvement Network (PR-COIN), and the CARRA network.
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