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

ABSTRACT:

Background

Evidence-based guidelines for sickle cell disease (SCD) health maintenance and management have been developed for primary health care providers, but not for individuals with SCD. To improve the quality of care delivered to individuals with SCD and their caregivers, the main purposes of this study were to: (1) understand the desire for patient-centered guidelines among the SCD community; and (2) adapt guideline material to be patient-centered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease.

Methods

From May-December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave feedback at community forums (n = 64) and community listening sessions (n

SUBMITTER: Cronin RM 

PROVIDER: S-EPMC5994026 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature