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NEWSLETTER
Winter, 2020

We Want to Hear From You

How has COVID-19 impacted your clinical practice or research? Please take this Cure JM provider survey to let us know:

 TAKE THE SURVEY NOW 

The survey will take about 2-3 minutes to complete. The purpose of the survey is to help us understand how this crisis impacts our Cure JM Medical Network healthcare providers and researchers and gives us direction on how to best support our medical community during this critical time.


Transitioning from Pediatric to Adult Care Webinar Recording

Rodolfo Curiel, MD, FACP, FACR, and Rebecca Sadun, MD, PhD, share strategies to aid in the transition from pediatric to adult care.

Rodolfo Curiel, MD, FACP, FACR is an adult rheumatologist and the Program Director of the Rheumatology Fellowship, the Director of the GW Myositis Center and Associate Professor of Medicine at The George Washington University Medical Faculty Associates.

Rebecca Sadun, MD, PhD, adult and pediatric rheumatologist with clinical and research interests in the areas of lupus and transition to adult care. She splits her time between the departments of Medicine and Pediatrics at Duke University.


Deadline Update on the 2021 Cure JM Research Grant Letters of Intent

The COVID-19 crisis has forced many institutions to close and prompted many research projects to suspended work. In light of these circumstances, we have moved up the 2021 grant letters of intent deadline to the fall. Stay tuned for more information in the coming months.


Emotional Health, Coping, Resilience, and Juvenile Myositis

Suzanne Edison, MA, MFA, and Director, Cure JM Board of Directors

Cure JM Medical Conference YouTube Rlaylist screen

I am sure that my story will be familiar to many of you. I will tell you how the diagnosis of JDM not only affected me and my child, but what we at Cure JM, have done, and are doing, to make the emotional health of our kids a priority.

I have a background as a psychotherapist, but when my daughter was diagnosed in 2007 I was completely overwhelmed and in shock. In some ways the diagnosis was a relief; at least now, after more than a year, we knew what we were dealing with and we discovered there were treatments. However, I was not prepared for all the changes, both emotional and psychological, that this diagnosis wrought on both me and my daughter. After a month or more I knew I needed to talk to someone who’d been through this journey and was able to assure me that my feelings were normal. I was feeling very alone, not sleeping or eating well, nor thinking as clearly as I might. I cried a lot. There was so much to learn and to do. I felt scared about the future for my child, felt guilty I hadn’t found a diagnosis sooner, and a host of other emotions including anger, sadness, grief.

Talking to one mom made me realize that if I, a trained therapist, needed support it was likely other parents were feeling and needing the same thing. I began a support group at Seattle Children’s Hospital in 2008 and led it for 7 years. In that same time, I began to see that my child also needed more support than I could give her. We all know how JM can change our kids’ appearance with steroids, rashes, or calcinosis. We know they are “different” than most kids their age as they must wear sun screen and protective clothing, they may be weaker and not able to participate in sports or other social activities at the same level. We also know that the time spent at doctors or in hospitals robs them of some of their childhood fun. And for many, the treatments, shots and infusions and side effects of the drugs, can be traumatic. Often their experiences are invisible to others. Anxiety, depression and thoughts of self-harm are not uncommon for our kids. What to do?

Emotional and mental health support for kids living a with chronic illness is a well-documented need in other disease fields; e.g. Cystic Fibrosis, Type 1 Diabetes, Ulcerative colitis, and of course, cancer. Many parents and experts in these areas see the need for mental and emotional health assessment and treatment. We, at Cure JM, began moving forward on this issue a few years ago. Initially we provided Coping Skills workshops at our annual conferences for parents, along with support groups for teens, and siblings, but we knew it wasn’t enough. JM affects the whole family, and each member differently. Now, we are taking a multi-pronged approach for our kids and parent needs.

A few years ago, we collaborated with Andrea Knight, MD, MSCE, a rheumatologist and leader in mental health research for kids with Lupus, to help us begin documenting the needs of our families. In order to understand how our families cope with mental health, we surveyed Cure JM patients and parents on the “Mental Health Needs of JM Patients and Potential Interventions” and found that from the 58 replies, 28% of JM adolescent and young adult patients reported depression and 33% reported anxiety. These percentages are 2-3 times higher than the 2016 national average of depression in adolescents (12.8%) and young adults (10.9%), according to the National Institute of Mental Health.

ln 2018, we again engaged Dr. Knight to help Cure JM. We provided focus groups at our annual conference. We had six focus groups of parents, of youth between the ages of 6 and 21 years diagnosed with JM, give us parent perspectives on mental health.  Again, the results were striking, and varied by age, severity and length of disease activity.

Clinician diagnosed Depression = 28%

Self-reported symptoms = 12%

Clinician diagnosed Anxiety = 33% 

Self-reported symptoms = 21%

Clinician diagnosed Adjustment Disorder = 19% 

Self-reported symptoms = 9%

Clinician diagnosed Suicidal thoughts = 10%

Self-reported symptoms = 2%

44% of these symptoms are not brought to medical attention.

No difference in prevalence reported by 153 parents of JDM youth.

Summary of Results

  • The most common emotional health experiences of youth reported by parents were depression, anxiety, and strength/resiliency.
  • The most desired interventions included counseling and peer support groups.
  • Factors contributing to depression, anxiety, and strength changed over time, corresponding to developmental age and phase of disease.
  • Parents desired coping skills and counseling throughout the disease course, from diagnosis into stable disease, with increased support at disease flares.

Additionally, Cure JM has:

  • Added criteria to our Centers of Excellence to include emotional health assessment and treatment pathways, and provide education and resource materials on emotional health.
  • In 2019 we provided educational materials (as a PDF download) on emotional health and resources for parents on the website and handed them out at our national medical and family conferences. See this link for more information, resources, and access to the Emotional Health poster.
  • Most recently we have approved a pilot project, small grant for a child psychologist to be included in the Seattle COE JM clinic. Parent support advocate, Suzanne Edison, will be documenting the pathways, resources and people she organized to make this happen and that document will be a template for future COE’s, with allowances for tailoring it to each center’s specific needs. 
  • Additionally, in Seattle, we plan to look at the outcomes both on the disease course of JM and the emotional health of the patients, when greater attention is paid to their emotional health needs. We hope to publish this in the future.

Other Steps:

  • For the past few years a Mental Health working group has convened at CARRA (Childhood Arthritis and Rheumatology Research Association) to investigate the needs and barriers to integrating mental health care into all pediatric rheumatology practices. Now, two task forces are focused on developing a set of consensus guidelines for the assessment and treatment of mental health in a pediatric rheumatology setting. These task forces include leadership from two Cure JM board members (Suzanne Edison & Tracy Van Ness), other parents of Lupus and JIA kids, a couple of teen and young adult Rheum patients, child psychologists and pediatric rheumatologists. We intend to circulate these guidelines prior to the 2021 conference and then solicit feedback in April at the 2020 CARRA conference. We are moving towards adopting them within the year.

Cure JM welcomes your input, questions and experiences. Please email james.minow@curejm.org to share your input.