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Opinion
Proposed framework for unifying disease definitions in guideline development
  1. Hassan Kawtharany1,
  2. Muayad Azzam1,
  3. M Hassan Murad2,
  4. Rebecca L Morgan3,4,
  5. Yngve Falck-Ytter4,5,
  6. Shahnaz Sultan6,7,
  7. Philipp Dahm8,9,
  8. Reem A Mustafa10
  1. 1Evidence-Based Practice and Impact Center, Department of Internal Medicine, The University of Kansas Medical Center, Kansas City, Kansas, USA
  2. 2Division of Public Health, Infectious Diseases and Occupational Medicine, Mayo Clinic Minnesota, Rochester, Minnesota, USA
  3. 3Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, New York, Canada
  4. 4School of Medicine, Case Western Reserve University, Cleveland, Ohio, USA
  5. 5VA Northeast Ohio Healthcare System, Cleveland, Ohio, USA
  6. 6Division of Gastroenterology, University of Minnesota, Minneapolis, Minnesota, USA
  7. 7Minneapolis VA Health Care System, Minneapolis, Minnesota, USA
  8. 8Urology Section, Minneapolis VA Health Care System, Minneapolis, Minnesota, USA
  9. 9Department of Urology, University of Minnesota Twin Cities, Minneapolis, Minnesota, USA
  10. 10Division of Nephrology and Hypertension, Department of Internal Medicine, The University of Kansas Medical Center, Kansas City, Kansas, USA
  1. Correspondence to Dr Reem A Mustafa; rmustafa{at}kumc.edu

https://doi.org/10.1136/bmjebm-2024-113134

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    Introduction

    A disease definition refers to the precise and clear characterisation or description of a particular medical condition or illness. A disease definition aims to provide a comprehensive understanding of the nature, symptoms and characteristics of the disease. A clear definition is critical for generating research, synthesis of evidence, decision-making and implementation of recommendations.1 It is also important for payors and policymakers. However, different medical societies, governmental agencies, researchers and patient advocacy groups may use different definitions for the same entity.2–4 In addition to the variation of the definition itself and its components, the terminology used to convey the definition may vary (ie, the specific vocabulary, nomenclature and language used to describe the definition).

    In the context of clinical practice guidelines, the lack of consistent definitions for certain diseases can impede the development of a recommendation based on a clear target population, intervention and outcomes.5–7 Thus, unifying or stratifying disease definitions is a crucial step to be implemented early in the guideline development process to ensure they are based on accurate and standardised information.2 3 However, limited evidence exists regarding an approach to harmonise inconsistent disease definitions, considering both the advantages and disadvantages of such standardisation. In this brief report, we aim to build on the collective experiences with inconsistent disease definitions to formulate a structured process for unifying disease definitions before conducting a clinical guideline. In box 1, we describe challenges and resolutions related to disease definition in two guidelines about the management of von Willebrand disease and acute hepatic porphyria.2 3 We leverage this experience along with a literature review to develop a framework for addressing disease definition variations in a clinical practice guideline. This framework applies to both unifying disease definitions and their terminology.

    Box 1

    Challenges and Resolutions Related to Disease Definitions in Two Guidelines about the Management of von Willebrand Disease and Acute Hepatic Porphyria

    Guideline about management of von Willebrand disease (VWD):

    Challenge: VWD is a common bleeding disorder. 1 …

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    Footnotes

    • X @hassankwth, @muayadazzam, @EBMUrology

    • Contributors Conceptualisation: HK, RAM. Methodology: HK, MHM, RLM, YF-Y, PD, SS, RAM. Writing—original draft: HK, MA, MHM, RAM. Writing—review and editing: All authors; Supervision: RAM; Project administration: HK.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests MHM, RLM, YF-Y, SS, PD and RAM are members of the US GRADE Network.

    • Provenance and peer review Not commissioned; externally peer reviewed.