Mental health in paediatric and adult myositis-related diseases: current state of research, interventions, and future steps from the MIHRA Psychological Impact Scientific Working Group.

Psychological and emotional well-being are critical aspects of overall health for individuals with chronic rheumatologic conditions. Mental health-related literature, however, predominantly focuses on systemic lupus erythematosus or rheumatoid arthritis, with limited emphasis on idiopathic inflammatory myopathies (IIMs). High proportions of those with juvenile myositis report psychological distress at levels warranting mental health referral.

Notes from the Field: Results from the .

Objective: To collect data and gain an understanding of parental satisfaction with and attitudes toward treatment in a pediatric integrated primary care (IPC) model.

Data Sources: Primary data were collected across the United States over the course of a few months.

Study Design: The 35-item, Parent Acceptance of Pediatric Integrated Care Survey (PAPICS) was developed by a panel of IPC experts.

Altered functional network connectivity and working memory dysfunction in adolescents with epilepsy.

Adolescents with epilepsy are at risk for deficits in working memory, which could lead to learning difficulties and poor academic outcomes. We used task-based functional magnetic resonance imaging (fMRI) to examine potential disruption in working memory function in adolescents with epilepsy as compared to healthy controls. We recruited 29 adolescents (13-17 years) with non-lesional epilepsy and 20 healthy controls.

Pilot Executive Functioning Intervention in Epilepsy: Behavioral and Quality of Life Outcomes.

Objective: To examine changes in emotional and behavioral functioning and health-related quality of life (HRQOL) following a web-based executive functioning (EF) intervention open pilot trial (e.g., Epilepsy Journey) for adolescents with epilepsy.

Epilepsy Journey: A proof of concept trial of a Web-based executive functioning intervention for adolescents with epilepsy.

Objective: To examine the preliminary feasibility and acceptability of a Web-based program, Epilepsy Journey, to improve executive function behaviors in adolescents with epilepsy.

Methods: We conducted a proof of concept single-arm pilot trial of Epilepsy Journey with 31 adolescents (average age = 15.3 ± 1.

Predicting Health Care Utilization and Charges Using a Risk Score for Poor Adherence in Pediatric Kidney Transplant Recipients.

Pediatric kidney transplant recipients must follow a complicated regimen of timely adherence to immunosuppressant medication, routine blood work, and medical follow-up visits. Failure to adhere to the recommended regimen can result in medical complications and costly treatment. We developed a novel risk score to identify patients at risk for poor adherence behaviors and evaluated whether it would predict future health care utilization and charges.

The formative design of Epilepsy Journey: A web-based executive functioning intervention for adolescents with epilepsy.

This case study discusses the design, development, and formative evaluation of Epilepsy Journey, an individually-tailored, web-based intervention designed to address the unique executive functioning (EF) needs of adolescents with epilepsy. This intervention was designed through a three-phase iterative, patient-centered participatory action research process. First, a front-end analysis was completed to identify the unique needs of adolescents with epilepsy and initial design ideas via focus groups.

Pattern of executive functioning in adolescents with epilepsy: A multimethod measurement approach.

Youth with epilepsy demonstrate deficits in executive functioning (EF), the skills necessary for goal-directed behavior (e.g., problem-solving, initiating, monitoring, organization, planning, and working memory).

Development of a web-based executive functioning intervention for adolescents with epilepsy: The Epilepsy Journey.

Introduction: Youth with epilepsy exhibit significant deficits in executive functioning (EF), yet there are few interventions to improve EF for adolescents. The aims of the current study were to develop an individually-tailored intervention, called Epilepsy Journey, to improve aspects of EF through an iterative, patient-centered process including focus groups and usability testing.

Methods: Five adolescents and caregivers participated in focus groups.