Abstract
BackgroundEvidence-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.MethodsFrom 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 = 43) about technology use for health information and desire for SCD-related guidelines. A team of community research partners consisting of community stakeholders, individuals living with SCD, and providers and researchers (experts) in SCD at nine institutions adapted guidelines to be patient-centered based on the following criteria: (1) understandable, (2) actionable, and (3) useful.ResultsIn community forums (n = 64), almost all participants (91%) wanted direct access to the content of the guidelines. Participants wanted guidelines in more than one format including paper (73%) and mobile devices (79%). Guidelines were adapted to be patient-centered. After multiple iterations of feedback, 100% of participants said the guidelines were understandable, most (88%) said they were actionable, and everyone (100%) would use these adapted guidelines to discuss their medical care with their health care providers.ConclusionsIndividuals 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.
Highlights
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, we developed a novel recursive process to create a single set of patient-centered guidelines using community-engaged research in a rare disease, SCD, where guidelines and high-quality evidence have been created for providers
Individuals with SCD and their caregivers used technology, wanted to know about guidelines and were interested in having the guideline educational material delivered in different ways A total of 64 individuals with SCD and their caregivers were included in the community forums
Summary
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 patientcentered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease. The primary care of adults with SCD is largely guided by the 2014 Evidence -Based Management of Sickle Cell Disease: Expert Panel Report. This report used the GRADE method to define and create evidence-based guidelines [7], and informs health care providers’ approaches to screening to prevent diseases or complications of chronic diseases, selecting treatments, monitoring and preventing complications, educating about disease, and counseling for individuals with SCD [8]. To date no national strategy has been developed to make these SCD-related guidelines; hereafter, referred to as guidelines, patient-centered
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