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Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers.

Robert Michael CroninTilicia L Mayo-GambleSarah-Jo StimpsonSherif M BadawyLori E CrosbyJeannie ByrdEmmanuel J VolanakisAdetola A KassimJean L RaphaelVelma M MurryMichael R DeBaun
Published in: BMC hematology (2018)
Individuals with SCD and their caregivers want access to guidelines through multiple channels, including technology. Guidelines written for health care providers can be adapted to be patient-centered using Community-engaged research involving providers and patients. These patient-centered guidelines provide a framework for patients to discuss their medical care with their health care providers.
Keyphrases
  • healthcare
  • end stage renal disease
  • ejection fraction
  • clinical practice
  • chronic kidney disease
  • palliative care
  • prognostic factors
  • peritoneal dialysis
  • mental health
  • patient reported outcomes
  • social media