Evaluation of health literacy and its association with medication adherence and quality of life in childhood-onset systemic lupus erythematosus.

OBJECTIVE: Little is known about health literacy in childhood-onset systemic lupus erythematosus (cSLE) and how health literacy relates to medication adherence and psychosocial outcomes in this high-risk population. The objective of this study was to evaluate health literacy in adolescents and young adults with cSLE and its association with medication adherence and quality of life. METHODS: Youth 10-24 years with cSLE (n = 48) completed the Brief Healthy Literacy Screen (BHLS) and the Newest Vital Sign (NVS) to assess health literacy. Participants also completed validated measures of medication adherence and quality of life. Descriptive analyses were used to determine levels of health literacy. Bivariate correlations were used to evaluate associations between measures of health literacy with adherence and quality of life. A multivariable regression analyses was used to determine if health literacy was a significant predictor of adherence or quality of life, after adjusting for age, sex, race, and household income. RESULTS: Inadequate health literacy was common in this population, with 67% of youth categorized as having inadequate health literacy by the BHLS and 42% by the NVS. Higher medication adherence was associated with a higher BHLS score (r=.36, p = .017). BHLS was also significantly associated with better quality of life (r = 0.31, p = .034). CONCLUSION: Inadequate health literacy is prevalent among youth with cSLE. Higher health literacy is associated with higher medication adherence and better quality of life, suggesting that attention to health literacy could improve outcomes for this vulnerable population.

Strategies to identify and stratify children with special health care needs in outpatient general pediatrics settings.

Developing improved systems of care for children with special health care needs (CSHCN) requires accurate identification and stratification of this population. This study was designed to assess the ability of a brief screener to identify and stratify CSHCN in a primary care clinic to focus future quality improvement initiatives and allocate resources. All families presenting for health maintenance visits or acute care appointments at an academic primary care clinic between September 5, 2012 and September 28, 2012 were asked to complete the CSHCN Screener(©). This panel of patients was compared to registries previously created by: (1) retrospective chart reviews using published lists of International Statistical Classification of Diseases and Related Health Problems (ICD9) codes for CSHCN and (2) direct physician referral to a clinic case manager providing care coordination services to CSHCN. Screeners identified 246 CSHCN (16.8 % of unique completed screeners). Scores ranged from 0 to 5; higher scores indicate higher levels of complexity. Patients with positive screens had a mean score of 2.4. Patients previously identified by retrospective ICD9 search who completed a screener had a mean score of 1.6 with nearly one-half having negative screens. Patients previously identified by physician referral who completed a screener had a mean score of 2.7 with nearly one-half having scores of 4 or 5. The CSHCN Screener(©) can be utilized in an academic primary care clinic to prospectively identify CSHCN and potentially offers a more clinically meaningful method of identification given its inherent ability to stratify this population based on complexity of medical needs.

The Effect of Psychiatric Comorbidity on Healthcare Utilization for Youth With Newly Diagnosed Systemic Lupus Erythematosus.

OBJECTIVE: To examine the effect of psychiatric diagnoses on healthcare use in youth with systemic lupus erythematosus (SLE) during their first year of SLE care. METHODS: We conducted a retrospective cohort study using claims from 2000 to 2013 from Clinformatics Data Mart (OptumInsight). Youth aged 10 years to 24 years with an incident diagnosis of SLE (≥ 3 International Classification of Diseases, 9th revision, codes for SLE 710.0, > 30 days apart) were categorized as having: (1) a preceding psychiatric diagnosis in the year before SLE diagnosis, (2) an incident psychiatric diagnosis in the year after SLE diagnosis, or (3) no psychiatric diagnosis. We compared ambulatory, emergency, and inpatient visits in the year after SLE diagnosis, stratified by nonpsychiatric and psychiatric visits. We examined the effect of childhood-onset vs adult-onset SLE by testing for an interaction between age and psychiatric exposure on outcome. RESULTS: We identified 650 youth with an incident diagnosis of SLE, of which 122 (19%) had a preceding psychiatric diagnosis and 105 (16%) had an incident psychiatric diagnosis. Compared with those without a psychiatric diagnosis, youth with SLE and a preceding or incident psychiatric diagnosis had more healthcare use across both ambulatory and emergency settings for both nonpsychiatric and psychiatric-related care. These associations were minimally affected by age at time of SLE diagnosis. CONCLUSION: Psychiatric comorbidity is common among youth with newly diagnosed SLE and is associated with greater healthcare use. Interventions to address preceding and incident psychiatric comorbidity may decrease healthcare burden for youth with SLE.

Multicenter Study of Utility and Acceptability of Depression and Anxiety Screening in Adolescents and Young Adults With Childhood-Onset Systemic Lupus.

OBJECTIVE: To determine the utility and acceptability for depression and anxiety screening of adolescents and young adults (AYA) with childhood-onset systemic lupus erythematosus (cSLE) in the pediatric rheumatology setting. METHODS: AYA with cSLE, ages 12-21 years, from 8 collaborating sites, were consecutively screened for depression and anxiety with the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder 7-item scale (GAD-7). Demographic and disease characteristics were collected, as well as patient-reported outcome measures using the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric profile-25. Acceptability of screening was assessed with postscreening surveys completed by AYA and parents. Chi-square and Wilcoxon rank sum tests examined the relationship between patient characteristics and history of previous screening. Spearman correlations examined relationships between screening scores, PROMIS domains, and other disease factors. RESULTS: Among 106 AYA screened, 64 (60%) had been previously screened, 25 (24%) by general pediatricians. Thirty-two (30%) AYA screened positive, including 24% for depression, 17% for anxiety, and 14% for suicidal ideation. Depression and anxiety symptom severity were highly correlated with increased PROMIS domain scores for fatigue and pain interference and moderately correlated with increased pain severity, decreased mobility, and decreased peer relationships. Eighty-six percent of AYA and 95% of parents expressed comfort with screening in the pediatric rheumatology setting. CONCLUSION: Depression, anxiety, and suicidal ideation are common among AYA with cSLE, and symptoms are correlated with important patient-reported outcomes. Mental health screening in the pediatric rheumatology setting was highly acceptable among AYA with cSLE and their parents.

Impact of Psychiatric Diagnosis and Treatment on Medication Adherence in Youth With Systemic Lupus Erythematosus.

OBJECTIVE: Youth with systemic lupus erythematosus (SLE) experience high rates of psychiatric comorbidities, which may affect medication adherence. We undertook this study to examine the association between psychiatric disorders and hydroxychloroquine adherence and to determine whether psychiatric treatment modifies this association. METHODS: We identified incident hydroxychloroquine users among youth with SLE (ages 10-24 years) using de-identified US commercial insurance claims in Optum Clinformatics Data Mart (2000-2016). Adherence was estimated using medication possession ratios (MPRs) over a 365-day time period. Multivariable linear regression models were used to estimate the effect of having any psychiatric disorder on MPRs, as well as the independent effects of depression, anxiety, adjustment, and other psychiatric disorders. We tested for interactions between psychiatric diagnoses and treatment with psychotropic medications or psychotherapy. RESULTS: Among 873 subjects, 20% had a psychiatric diagnosis, most commonly depression. Only adjustment disorders were independently associated with decreased MPRs (ß -0.12, P = 0.05). We observed significant crossover interactions, in which psychiatric disorders had opposite effects on adherence depending on the receipt of psychiatric treatment. Among youth with any psychiatric diagnosis, psychotropic medication use was associated with a 0.15 increase in the MPR compared with no psychotropic medication use (P = 0.02 for interaction). Among youth with depression or anxiety, psychotherapy was also associated with a higher MPR compared with no psychotherapy (P = 0.05 and P < 0.01 for interaction, respectively). CONCLUSION: The impact of psychiatric disorders on medication adherence differed by whether youth had received psychiatric treatment. Improving recognition and treatment of psychiatric conditions may increase medication adherence in youth with SLE.

Immunomodulatory Medication Use in Newly Diagnosed Youth With Systemic Lupus Erythematosus.

OBJECTIVE: To examine glucocorticoid-sparing immunomodulatory medication use in youth with systemic lupus erythematosus (SLE) during their first year of care. METHODS: We conducted a retrospective cohort study using administrative claims for 2000 to 2013 from Clinformatics DataMart for youth ages 10-24 years with an incident diagnosis of SLE (≥3 International Classification of Diseases, Ninth Revision codes for SLE [710.0], each >30 days apart). We determined the proportion of subjects filling a prescription for immunomodulatory medications within 12 months of the first SLE code (index date). We used multivariable regression to examine associations between demographic/disease factors and time to prescription fill in the first year, and also between prescription fill at any time after the index date. RESULTS: We identified 532 youth with an incident SLE diagnosis, of which 413 (78%) had a glucocorticoid-sparing immunomodulatory prescription fill in the first year. Prescriptions for hydroxychloroquine and immunosuppressants were filled in the first year by 366 youth (69%) and by 182 (34%), respectively. Those with adult-onset (versus childhood-onset) disease were less likely to fill an immunomodulatory medication by 12 months. No other statistically significant associations were found, although there was increasing likelihood of immunomodulatory medication fills with each subsequent calendar year. CONCLUSION: Among youth with newly diagnosed SLE, hydroxychloroquine use is prevalent although not universal, and prescription immunosuppressant use is notably low during the first year of care. Further research is needed to identify factors contributing to suboptimal immunomodulatory medication use during the first year of care.

Prioritized Agenda for Mental Health Research in Pediatric Rheumatology from the Childhood Arthritis and Rheumatology Research Alliance Mental Health Workgroup.

OBJECTIVE: Mental health problems are prevalent in youth with rheumatologic disease. Gaps in knowledge exist regarding their effect, as well as strategies for detection and effective treatment. To address these gaps, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health Workgroup developed and prioritized an agenda of research topics. METHODS: We systematically reviewed the literature and identified 5 major research domains in further need of study: (A) mental health burden and relationship to pediatric rheumatologic disease, (B) effect of mental health disorders on outcomes, (C) mental health awareness and education, (D) mental health screening, and (E) mental health treatment. Research topics within these areas were developed by workgroup leaders and refined by the workgroup. Members were surveyed to prioritize the topics by importance, feasibility of study, and actionability. RESULTS: Fifty-nine members (57%) completed the survey. Among the proposed research topics, 31/33 were rated as highly important and 4/33 were rated highly for importance, feasibility, and actionability. Topics rated most important related to (A) mental health burden and relationship to rheumatologic disease, and (B) the effect of mental health on outcomes. Topics rated most feasible and actionable were related to (D) mental health screening. CONCLUSION: Addressing gaps in knowledge regarding mental health in youth with rheumatologic disease is essential for improving care. We have identified high priority research topics regarding mental health of pediatric rheumatology patients in need of further investigation that are feasible to study and believed to lead to actionable results in patient care.

Gaps in Mental Health Care for Youth With Rheumatologic Conditions: A Mixed Methods Study of Perspectives From Behavioral Health Providers.

OBJECTIVE: To identify behavioral health provider perspectives on gaps in mental health care for youth with rheumatologic conditions. METHODS: Social workers (n = 34) and psychologists (n = 8) at pediatric rheumatology centers in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) completed an online survey assessing current practices and mental health care needs of youth with rheumatologic conditions. Responses were compared to a published survey of CARRA rheumatologists (n = 119). Thematic analysis of 20 semi-structured interviews with behavioral health providers was performed. RESULTS: One-third of CARRA centers (n = 100) had no affiliated social worker or psychologist. Only 1 behavioral health provider reported current universal mental health screening at their rheumatology clinic, yet routine depression screening was supported by >85% of behavioral health providers and rheumatologists. Support for anxiety screening was higher among behavioral health providers (90% versus 65%; P < 0.01). Interviews illustrated a need for interventions addressing illness-related anxiety, adjustment/coping/distress, transition, parent/caregiver mental health, and peer support. Limited resources, lack of protocols, and patient cost/time burden were the most frequent barriers to intervention. Inadequate follow-up of mental health referrals was indicated by 52% of providers. More behavioral health providers than rheumatologists favored mental health services in rheumatology settings (55% versus 19%; P < 0.01). Only 7 social workers (21%) provided counseling/therapy, and interviews indicated their perceived underutilization of these services. CONCLUSION: Behavioral health providers indicated an unmet need for mental health interventions that address illness-related issues affecting youth with rheumatologic conditions. Implementation of mental health protocols and optimizing utilization of social workers may improve mental health care for these youth.

Mental health care for youth with rheumatologic diseases - bridging the gap.

Youth with rheumatologic diseases have a high prevalence of comorbid mental health disorders. Individuals with comorbid mental health disorders are at increased risk for adverse outcomes related to mental health as well as their underlying rheumatologic disease. Early identification and treatment of mental health disorders has been shown to improve outcomes, but current systems of care fall short in providing adequate mental health services to those in need. Pediatric rheumatologists are uniquely positioned to provide mental health screening and intervention for youth with rheumatologic diseases due to the frequency of patient encounters and ongoing therapeutic relationship with patients and families. However, additional training is likely required for pediatric rheumatologists to provide effective mental health care, and focusing efforts on providing trainees with mental health education is key to building competency. Potential opportunities for improved mental health education include development of clinical guidelines regarding mental health screening and management within pediatric rheumatology settings and incorporation of mental health didactics, workshops, and interdisciplinary clinic experiences into pediatric rheumatology fellowship curricula. Additional steps include mental health education for patients and families and focus on system change, targeting integration of medical and mental health care. Research is needed to better define the scope of the problem, determine effective strategies for equipping pediatric rheumatologists with skills in mental health intervention, and develop and implement sustainable systems for delivery of optimal mental health care to youth with rheumatologic diseases.

Significance of Concussions in Hawai'i: From Land to Sea.

Head injuries are a particular concern in Hawai'i given the large military population, the presence of many land and water sports such as football and surfing, and the lenient helmet laws for motorcycle and bicycle riders. Physical, psychological, and cognitive symptoms from single or repeated concussions can affect an individual's reentry to society and activity. Current literature indicates that repeated head injuries are associated with chronic traumatic encephalopathy (CTE) which is thought to lead to dementia. This paper reviews literature discussing causes of concussion including its incidence and prevalence in Hawai'i. Furthermore, the neurophysiological and neurobiological etiologies are discussed followed by an overview of methods for identification and management of concussion. The paper serves as information for professionals in the community such as educators, military personnel, and healthcare workers to identify risks of concussion, management of symptoms, and to connect with resources and programs available in Hawai'i.

Identifying Targets for Improving Mental Healthcare of Adolescents with Systemic Lupus Erythematosus: Perspectives from Pediatric Rheumatology Clinicians in the United States and Canada.

OBJECTIVE: To identify targets for improving mental healthcare of adolescents with systemic lupus erythematosus (SLE) by assessing current practices and perceived barriers for mental health intervention by pediatric rheumatology clinicians. METHODS: Members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) completed a Web-based survey assessing current mental health practices, beliefs, and barriers. We examined associations between provider characteristics and the frequency of barriers to mental health screening and treatment using multivariable linear regression. RESULTS: Of the 375 eligible CARRA members, 130 responded (35%) and 119 completed the survey. Fifty-two percent described identification of depression/anxiety in adolescents with SLE at their practice as inadequate, and 45% described treatment as inadequate. Seventy-seven percent stated that routine screening for depression/anxiety in pediatric rheumatology should be conducted, but only 2% routinely used a standardized instrument. Limited staff resources and time were the most frequent barriers to screening. Respondents with formal postgraduate mental health training, experience treating young adults, and practicing at sites with very accessible mental health staff, in urban locations, and in Canada reported fewer barriers to screening. Long waitlists and limited availability of mental health providers were the most frequent barriers to treatment. Male clinicians and those practicing in the Midwest and Canada reported fewer barriers to treatment. CONCLUSION: Pediatric rheumatology clinicians perceive a need for improved mental healthcare of adolescents with SLE. Potential strategies to overcome barriers include enhanced mental health training for pediatric rheumatologists, standardized rheumatology-based mental health practices, and better integration of medical and mental health services.

Transition care for children with special health care needs.

BACKGROUND: Approximately 750,000 children in the United States with special health care needs will transition from pediatric to adult care annually. Fewer than half receive adequate transition care. METHODS: We had conversations with key informants representing clinicians who provide transition care, pediatric and adult providers of services for individuals with special health care needs, policy experts, and researchers; searched online sources for information about currently available programs and resources; and conducted a literature search to identify research on the effectiveness of transition programs. RESULTS: We identified 25 studies evaluating transition care programs. Most (n = 8) were conducted in populations with diabetes, with a smaller literature (n = 5) on transplant patients. We identified an additional 12 studies on a range of conditions, with no more than 2 studies on the same condition. Common components of care included use of a transition coordinator, a special clinic for young adults in transition, and provision of educational materials. CONCLUSIONS: The issue of how to provide transition care for children with special health care needs warrants further attention. Research needs are wide ranging, including both substantive and methodologic concerns. Although there is widespread agreement on the need for adequate transition programs, there is no accepted way to measure transition success. It will be essential to establish consistent goals to build an adequate body of literature to affect practice.

Family report of ASD concomitant with depression or anxiety among US children.

The objective is to estimate prevalence of parent-reported depression or anxiety among children with ASD, and describe parental concerns for their children. The design is Analysis of National Survey of Children's Health, 2003-2004. The participants are a national sample of 102,353 parents. 311,870 (544/100,000) parents of children ages 4-17 in the US reported that their child was diagnosed with autism. 125,809 also reported that their child had depression or anxiety (219/100,000). These parents report substantially higher concerns about their child's self-esteem, academic success, and potential to be bullied. Clinicians should take into account that children with ASD may face increased risk of depression or anxiety in adolescence. Coordinated care addressing social and emotional health in addition to clinical attention is important in this population.