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Type I Diabetes

The prevalence of type 1 diabetes in youth is approximately 2/1000 children. There are 20,000 healthcare visits annually for diabetic ketoacidosis for children with type 1 diabetes.  Readmission for diabetic ketoacidosis is relatively high at 20.3% within one year. Patients also have a risk of severe hypoglycemia of 19/100 patient years. Those patients who are underinsured or have an increased glycosylated hemoglobin (HbA1c) are associated with a higher risk for these acute diabetic complications.

BACKGROUND

  • The project consists of a prospective observational cohort study of type 1 diabetes patients aged 5-17 years who will be followed for up to three years

  • We will also study type 1 diabetes patients with disease exacerbations who present to the emergency department

  • The PROMIS measures that will be used include the Pediatric Profile 25 and the new PROMIS measures (pain behavior, pain quality, physical activity, physical stress experience, strength impact, and family relationships)

STUDY AIMS

  • The overall objective of the Midwest Child Patient Reported Outcomes (M-cPROs) Consortium is to advance the understanding and measurement of cPROs in children with chronic disease using the Patient Reported Outcomes Measurement Information System® (PROMIS®) to allow for widespread use in both clinical care and research to optimize the well-being and functioning of the child

  • To achieve this objective, the scientific research projects within the M-cPROs Consortium aim to:

    • Improve outcomes that matter to children with chronic disease by: understanding the impact of disease factors, including acute disease exacerbations on patient pain behavior, pain quality, physical activity, physical stress experience, strength impact, and family relationships, assessing the relationship between the family relationships measure and other cPROs, and evaluating the impact of environmental stressors (e.g., socioeconomic deprivation) on patient pain behavior, pain quality, physical activity, physical stress experience, strength impact, and family relationships

    • Validate new PROMIS measures in multiple chronic disease populations to support a common metric for cPROs measurement in children with chronic disease

    • Determine whether PROMIS measures are responsive to change in health and whether that change is clinically relevant in children with chronic disease

GOALS