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

Robert Michael Cronin, Tilicia L. Mayo-Gamble, Sarah Jo Stimpson, Sherif M Badawy, Lori E. Crosby, Jeannie Byrd, Emmanuel J. Volanakis, Adetola A. Kassim, Jean L. Raphael, Velma M. Murry, Michael R. DeBaun

Research output: Contribution to journalArticle

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 = 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. Results: In 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. Conclusions: 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.

Original languageEnglish (US)
Article number12
JournalBMC Hematology
Volume18
Issue number1
DOIs
StatePublished - Jun 8 2018

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Sickle Cell Anemia
Caregivers
Guidelines
Health Personnel
Medical Informatics
Quality of Health Care
Research
Volunteers
Primary Health Care
Research Personnel
Organizations

Keywords

  • Clinical practice guidelines
  • Community-engaged research
  • Patient decision making
  • Patient-centered
  • Qualitative methods
  • Sickle cell disease
  • Technology

ASJC Scopus subject areas

  • Molecular Biology
  • Hematology

Cite this

Cronin, Robert Michael ; Mayo-Gamble, Tilicia L. ; Stimpson, Sarah Jo ; Badawy, Sherif M ; Crosby, Lori E. ; Byrd, Jeannie ; Volanakis, Emmanuel J. ; Kassim, Adetola A. ; Raphael, Jean L. ; Murry, Velma M. ; DeBaun, Michael R. / Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers. In: BMC Hematology. 2018 ; Vol. 18, No. 1.
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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 = 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. Results: In 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. Conclusions: 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.",
keywords = "Clinical practice guidelines, Community-engaged research, Patient decision making, Patient-centered, Qualitative methods, Sickle cell disease, Technology",
author = "Cronin, {Robert Michael} and Mayo-Gamble, {Tilicia L.} and Stimpson, {Sarah Jo} and Badawy, {Sherif M} and Crosby, {Lori E.} and Jeannie Byrd and Volanakis, {Emmanuel J.} and Kassim, {Adetola A.} and Raphael, {Jean L.} and Murry, {Velma M.} and DeBaun, {Michael R.}",
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Cronin, RM, Mayo-Gamble, TL, Stimpson, SJ, Badawy, SM, Crosby, LE, Byrd, J, Volanakis, EJ, Kassim, AA, Raphael, JL, Murry, VM & DeBaun, MR 2018, 'Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers' BMC Hematology, vol. 18, no. 1, 12. https://doi.org/10.1186/s12878-018-0106-3

Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers. / Cronin, Robert Michael; Mayo-Gamble, Tilicia L.; Stimpson, Sarah Jo; Badawy, Sherif M; Crosby, Lori E.; Byrd, Jeannie; Volanakis, Emmanuel J.; Kassim, Adetola A.; Raphael, Jean L.; Murry, Velma M.; DeBaun, Michael R.

In: BMC Hematology, Vol. 18, No. 1, 12, 08.06.2018.

Research output: Contribution to journalArticle

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T1 - Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers

AU - Cronin, Robert Michael

AU - Mayo-Gamble, Tilicia L.

AU - Stimpson, Sarah Jo

AU - Badawy, Sherif M

AU - Crosby, Lori E.

AU - Byrd, Jeannie

AU - Volanakis, Emmanuel J.

AU - Kassim, Adetola A.

AU - Raphael, Jean L.

AU - Murry, Velma M.

AU - DeBaun, Michael R.

PY - 2018/6/8

Y1 - 2018/6/8

N2 - 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 = 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. Results: In 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. Conclusions: 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.

AB - 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 = 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. Results: In 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. Conclusions: 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.

KW - Clinical practice guidelines

KW - Community-engaged research

KW - Patient decision making

KW - Patient-centered

KW - Qualitative methods

KW - Sickle cell disease

KW - Technology

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