Interview with Laura Mackner

Laura, can you give us a professional snapshot of who you are?

I have several roles and titles etc., as you can see by my signature. I primarily conduct research as an Investigator in the Center for Biobehavioral Health at Nationwide Children’s (NCH). That’s about 85% of my job.  I also do some clinical work, primarily with children with IBD, as a child psychologist working with the IBD team and in the Division of Pediatric Psychology at NCH.  This is primarily outpatient psychotherapy, although in the past I have also done inpatient consults and work in the GI Clinic.  Finally, I have an academic appointment at Ohio State University, in the College of Medicine in the Department of Pediatrics, providing training and supervision to psychology and GI interns, residents and fellows.

What will you be sharing at the Community Conference?

I’ll be leading a breakout session on peer mentoring and giving a presentation on psychosocial issues in pediatric IBD.

For the session on peer mentoring, I’ll (1) discuss some of the research on mentoring programs and some of the “best practices” that have been developed from this research, (2) identify some practical resources for developing a mentoring program that exist, and (3) we’ll spend most of the session discussing challenges specific to developing a peer mentoring program for youth with IBD.  I’ll discuss the peer mentoring program I’ve been running at NCH, and I hope to brainstorm with the participants in the session about some of the challenges that all mentoring programs face (e.g., recruiting male mentors) as well as some of the challenges specific to IBD mentoring programs (e.g., confidentiality, mentor-mentee matching issues).  Jennie David and Isabell Linguiti will be joining me to sharing their experiences with formal and informal mentoring and help with brainstorming as well.

For the presentation on psychosocial issues, I’ll be discussing psychosocial issues that affect patients and families living with IBD, and how psychosocial issues can also affect health outcomes in IBD.   We know that IBD can affect pretty much any area of life, so I’ll be reviewing the research on overall quality of life, emotions, social life, school, and family.  I’ll also review research on the risk factors that have been identified that suggest which children are more likely to experience problems in these areas.  Then I’ll discuss how psychosocial factors can affect IBD, and things we can do to address psychosocial issues that may also affect IBD.

How does this session/focus pertain to parents?  Or how can parents use the information as part of our mission to help improve care.

For peer mentoring, we initially ran focus groups to develop our program, and our NCH parents had a lot of great ideas.  I’d love to hear from the ICN parents, and I hope the information provided in the session will be useful for any parents who are interested in developing a mentoring program.

For the presentation on psychosocial issues, parents certainly play a role in the psychosocial health of their children, and I’ll specifically be discussing ways we might be able to improve psychosocial and physical health.

An update from the Patient Priorities team

ImproveCareNow has partnered with Patient PrioritiesThe IBD Learning Priorities project was designed to give young adults, parents and clinicians in the IBD community a chance to ask the questions they felt were most important in the treatment of IBD. Using an online survey, families and clinicians submitted over 200 questions – or ‘learning objectives’. Common themes included diet, diagnosis and individual care needs.

These questions will help us further understand what information those who are impacted by IBD really need. We expect to find some of these questions already have answers. And where there there is good research to answer these common questions, ImproveCareNow will work to develop and share this knowledge through family-centered tools and resources. Those questions that do not have complete answers will help prioritize future pediatric IBD research.

Below are a few examples of the learning objectives received from families and clinicians like you!

  • Beyond enteral therapy, what is the role of diet in the maintenance of remission in IBD?
  • Is 6mp safe? Will it hurt her liver anymore than it already is?
  • We need more data on dual therapy with thiopurines and methotrexate. Specifically, will patients do better if these agents are started before starting biologics rather than starting them at the same time?

Stay connected with ImproveCareNow by joining our CIRCLE so we can send you updates on the continued progress of these important community-developed learning objectives and ensure you have access to the family-centered tools and information that are developed in response to some of these questions.

Buzzy: A small tool to help in a big way

Three years ago my son started on Humira in an attempt to get his Ulcerative Colitis into remission. Although it quickly became apparent that Humira was controlling his UC, my husband and I were struggling to successfully administer the drug. Our process consisted of 30 to 40 minutes of negotiation along with bribes and other unsuccessful attempts at minimizing the injection pain. We tried our best to allow our son to have some control over the situation by waiting for him to tell us when he was ready.  In the end, we were just getting frustrated.  That is when we found Buzzy. Continue reading