Introduction: Management of Type 1 Diabetes (T1D) requires significant family effort and specialty support. We aimed to understand how living in a rural state impacts families’ experiences during and after diagnosis.https://knowledgeconnection.mainehealth.org/lambrew-retreat-2023/1013/thumbnail.jp

Bodnar, Chelsea

Bohnhoff, James C

Jacobs, Elizabeth A

Kohut, Michael, PhD

English

MaineHealth Knowledge Connection

MaineHealth MaineHealth Knowledge Connection Costas T. Lambrew Research Retreat 2023 Costas T. Lambrew Research Retreat 5-2023 Access to Pediatric Type 1 Diabetes Care in Montana James C. Bohnhoff Michael Kohut PhD Chelsea Bodnar Elizabeth A. Jacobs Follow this and additional works at: https://knowledgeconnection.mainehealth.org/lambrew-retreat-2023  Part of the Medical Education Commons, Pediatrics Commons, Public Health Commons, and the Pulmonology Commons James Bohnhoff, MD, MS1Elizabeth Jacobs, MD, MPP1Chelsea Bodnar, MD, MPhil2Mike Kohut, PhD11MaineHealth Institute of Research, 2Montana PediatricsIntroductionManagement of Type 1 Diabetes (T1D) requires significant family effort and specialty support. We aimed to understand how living in a rural state impacts families’ experiences during and after diagnosis.MethodsIn an electronic survey publicized through local diabetes clinics and organizations, we asked for demographics, clinical traits, and personal experiences. Qualitative analysis is ongoing.ResultsAmong 116 responses, emerging themes include: Localhealthcare unpreparedto diagnose and treat T1D, travel and financial burdens, and provider shortages, including endocrinologists, mental health experts, and school nurses.0%100%Continuousglucosemonitor Insulin pumpClosed loopsystemYes No0%100%EndocrinologyNutrition/Dietician Mental HealthMonthly Quarterly Twice AnnuallyAnnually Other NeverNo accessCare: how often does your child see …Travel: how many miles away is your …Technology: does your child currently use a …Primary Care OfficeEmergency DepartmentRange 0.5 – 240 1 – 490 Median 5 5“Upon discharge from the hospital/ICU; [the doctor] instructed us to get into our car and drive immediately from Butte to Bozeman and not eat any carbs until we got there.” “It took us almost a year to find a counselor for my son to speak with. It was very frustrating and sad because he was emotionally hurting.”“The nurse has to rotate between four schools so it’s not a comfortable feeling if my daughter had an emergency. The chances of the nurse being there are minimal.”“Our son nearly died. […] I asked for a blood test or urine test and the provider tried to talk us out of it because our son “wouldn’t like “ an IV. Finally they did; and the doctor came in crying. We thought he was dying. She told us he had Type 1 Diabetes . […] We found services totally not prepared to care for a child with T1. I have nightmares over this.”On diagnosis and initial education…“We’ve had to basically remain in poverty for the past seven years in order to keep his insurance through the state; the alternative is tens of thousands in copays and insurance premiums that would drop us back into poverty again regardless.”On access to care…On cost of care…Living with pediatric Type I Diabetes in Montana

Access to Pediatric Type 1 Diabetes Care in Montana

https://knowledgeconnection.mainehealth.org/cgi/viewcontent.cgi?article=1013&context=lambrew-retreat-2023

Access to Pediatric Type 1 Diabetes Care in Montana

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