Trends in the Use of Common Words and Patient-Centric Language in the Titles of Medical Journals, 1976-2015

Chen, Gregory M.; Pather, Sarshan R.; DeLisser, Horace M.

doi:10.1001/jamanetworkopen.2019.1083

Cited by 8 publications

(2 citation statements)

References 51 publications

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“…There is some evidence that patient-centeredness is being emphasized in medical journals. 21 In principle, the terms used to describe kidney function and disease should be understandable to all, with acknowledgement of variation in the level of health literacy. Use of multiple terms with similar meaning can lead to confusion, as can use of terms that forecast the future (such as "pre-dialysis") rather than describe the present.…”

Section: Nomenclature For Kidney Function and Diseasementioning

confidence: 99%

Nomenclature for kidney function and disease: report of a Kidney Disease: Improving Global Outcomes (KDIGO) Consensus Conference

Levey

Eckardt

Dorman

et al. 2020

Kidney International

430

244

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Box 1 | Prevailing attitudes of medical professionals emerging from public review and participant survey Agreement with goal of standardizing nomenclature, with acknowledgment of challenges Regarded multiplicity of terms and lack of adherence to established definitions as confusing and potentially leading to errors Anticipated that a standardized nomenclature would help foster consistency in trial design, execution, and reporting Judged consistency between terms used in scholarly and patient communities to be an important goal, but not one overriding the need for precision and efficiency Journal editors strongly agreed that having a more standardized nomenclature for kidney disease would be useful for their journals, but they anticipated time constraints of journal personnel to be the biggest barrier to implementation Qualified endorsement of replacing "renal" with "kidney" Felt that foregrounding "kidney" would be easier for patients and their families Perceived a greater likelihood of raising awareness, attracting funding, and influencing public policy with consistent use of "kidney" Cautioned against a wholesale switch because "renal" may be less awkward in some contexts and may be necessary in others (e.g., ESRD as a CMS definition) Dissatisfaction with "end-stage" as a descriptor of kidney disease Recognized that this wording can be demoralizing and stigmatizing for patients Considered the implication of imminent death to be outdated Frustrated by imprecision in its use (ranging from being a synonym for dialysis patients to a descriptor of patients with kidney failure with or without kidney replacement therapy) Recognition of the need for ongoing attention to nomenclature issues Noted that standardization of nomenclature is dependent on uptake of consensus definitions B where definitions are in flux or are more contentious, standardization of that nomenclature set may be premature B enhancing adoption of definitions requires continued effort Highlighted the need for harmonization with ongoing, broader-scope ontology efforts Expected that improved understanding of molecular mechanisms will lead to more-precise definitions and nomenclature CMS, Centers for Medicare & Medicaid Services; ESRD, end-stage renal disease.

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Section: Nomenclature For Kidney Function and Diseasementioning

confidence: 99%

Nomenclature for kidney function and disease: report of a Kidney Disease: Improving Global Outcomes (KDIGO) Consensus Conference

Levey

Eckardt

Dorman

et al. 2020

Kidney International

430

244

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“…This reflects a long-term trend. A survey of language used by five leading medical journals between 1976 and 2015 found that the use of person-centric words grew significantly in all but one publication, with an overall average increase of 19% [18] .…”

Section: What's In a Word?mentioning

confidence: 99%

“You’re only a carrier” – women and the language of haemophilia

Chaplin¹,

Khair²

2021

The Journal of Haemophilia Practice

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Women who have the gene variant for haemophilia are labelled solely as ‘carriers’ unless they have a factor VIII activity of ≤40%. This term, which describes an individual who can pass on a disorder but are themselves unaffected, reflects a legacy that extends from the 18th century to the present day. There is strong evidence that women labelled as carriers experience heavy periods, joint damage, pain and impaired quality of life. The label ‘carrier’ does not recognise this burden and is associated with guilt, stigma and difficulty accessing care. People living with a long-term disorder should now be described using person-first terminology and it is common to see the term ‘people with haemophilia’. The term ‘carrier’ should be limited to its application in genetics and not used as a catch-all label for women with haemophilia.

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Chiadez le titre et le résumé !

Laccourreye

Jankowski²

2023

Annales françaises d'Oto-rhino-laryngologie et de Pathologie Ce

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Trends in the Use of Common Words and Patient-Centric Language in the Titles of Medical Journals, 1976-2015

Cited by 8 publications

References 51 publications

Nomenclature for kidney function and disease: report of a Kidney Disease: Improving Global Outcomes (KDIGO) Consensus Conference

Nomenclature for kidney function and disease: report of a Kidney Disease: Improving Global Outcomes (KDIGO) Consensus Conference

“You’re only a carrier” – women and the language of haemophilia

Chiadez le titre et le résumé !

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