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Midwest Child-Patient Reported Outcome (M-cPROs) Consortium

Administered by the University of Wisconsin, the Midwest Child Patient Reported Outcomes (M-cPROs) Consortium seeks 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. One of the conditions the Medical College of Wisconsin has been evaluating is sickle cell disease.

Sickle cell disease, an autosomal recessive disease diagnosed at birth in the United States, affects one in 400 black infants. Patients with sickle cell disease have 2.6 acute care encounters/year due to pain. They also experience the highest rate of rehospitalization (33.4%) of any other condition, highlighting the significant burden this disease has on individuals and on the healthcare system.

BACKGROUND

  • Conduct a prospective observational cohort study of sickle cell disease patients aged 5-17 years who will be followed for up to three years

  • Study sickle cell disease patients with disease exacerbations who present to the emergency department

  • Evaluate the following PROMIS measures: the Pediatric Profile 25 and the new PROMIS measures (pain behavior, pain quality, physical activity, physical stress experience, strength impact, and family relationship)

STUDY AIMS

  • Advance the understanding and measurement of cPROs in children with sickle cell disease using PROMIS® to allow for widespread use in both clinical care and research to optimize their well-being and functioning

  • Improve outcomes that matter to children with sickle cell 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 sickle cell disease populations to support a common metric for cPROs measurement  

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

GOALS & RESULTS