Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Oct 19;19(20):13506.
doi: 10.3390/ijerph192013506.

A Participatory Framework for Plain Language Clinical Management Guideline Development

Rita Francisco  1   2   3 , Susana Alves  3   4 , Catarina Gomes  3   4 , Pedro Granjo  3   4 , Carlota Pascoal  1   2   3 , Sandra Brasil  1   2   3 , Alice Neves  3   4 , Inês Santos  3   4 , Andrea Miller  5 , Donna Krasnewich  6 , Eva Morava  7   8   9 , Christina Lam  10   11 , Jaak Jaeken  12 , Paula A Videira  1   2   3 , Vanessa Dos Reis Ferreira  1   2   3
Affiliations

A Participatory Framework for Plain Language Clinical Management Guideline Development

Rita Francisco et al. Int J Environ Res Public Health. .

Abstract

Background: Clinical management guidelines (CMGs) are decision support tools for patient care used by professionals, patients, and family caregivers. Since clinical experts develop numerous CMGs, their technical language hinders comprehension and access by nonmedical stakeholders. Additionally, the views of affected individuals and their families are often not incorporated into treatment guidelines. We developed an adequate methodology for addressing the needs and preferences of family and professional stakeholders regarding CMGs, a recently developed protocol for managing congenital disorders of glycosylation (CDG), a family of rare metabolic diseases. We used the CDG community and phosphomannomutase 2 (PMM2)-CDG CMGs as a pilot to test and implement our methodology.

Results: We listened to 89 PMM2-CDG families and 35 professional stakeholders and quantified their CMG-related needs and preferences through an electronic questionnaire. Most families and professionals rated CMGs as relevant (86.5% and 94.3%, respectively), and valuable (84.3% and 94.3%, respectively) in CDG management. The most identified challenges were the lack of CMG awareness (50.6% of families) and the lack of plain language CMG (39.3% of professionals). Concordantly, among families, the most suggested solution was involving them in CMG development (55.1%), while professionals proposed adapting CMGs to include plain language (71.4%). Based on these results, a participatory framework built upon health literacy principles was created to improve CMG comprehension and accessibility. The outputs are six complementary CMG-related resources differentially adapted to the CDG community's needs and preferences, with a plain language PMM2-CDG CMG as the primary outcome. Additionally, the participants established a distribution plan to ensure wider access to all resources.

Conclusions: This empowering, people-centric methodology accelerates CMG development and accessibility to all stakeholders, ultimately improving the quality of life of individuals living with a specific condition and raising the possibility of application to other clinical guidelines.

Keywords: PMM2-CDG; clinical management guidelines; congenital disorders of glycosylation (CDG); health literacy; participatory medicine; people-centric; plain language; rare diseases.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Development, refinement, and distribution of the CDG Journey Mapping e-Questionnaire.
Figure 2
Figure 2
Framework for developing plain CMGs based on CDG community’s needs/preferences and health literacy principles.
Figure 3
Figure 3
Characteristics of the CDG Journey Mapping e-Questionnaire respondents. It included PMM2-CDG family members and professional stakeholders. (A) Family and (B) professional respondents’ categories; (C) families’ and (D) professionals’ academic qualifications; (E) families’ and (F) professionals’ geographic distribution (per country of residence).
Figure 4
Figure 4
CMG recognition, perceived importance, and usefulness by CDG family and professional participants. (A) Families and professionals’ awareness of CMGs; (B) families and professionals attributed importance to CMGs; (C) CMG perceived usefulness by families and professionals in the care and management of CDG.
Figure 5
Figure 5
CMG challenges and solutions identified by CDG family and professional participants. (A) Families and professionals pinpointed CMG challenges; (B) families and professionals proposed CMG solutions.
Figure 6
Figure 6
Main challenges related to the creation/dissemination of CMGs.
Figure 7
Figure 7
The six CMG-related resources co-created by the CDG family and professional communities. A tripartite category was adopted to identify the target audiences: +++: primary target audience; +: secondary/complementary target audience; -: untargeted audience; legend: HCP—health care professionals; POs—patient organisations.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Field M.J., Lohr K.N., editors. Clinical Practice Guidelines: Directions for a New Program. National Academies Press; Washington, DC, USA: 1990. - PubMed
    1. Pavan S., Rommel K., Marquina M.E.M., Höhn S., Lanneau V., Rath A. Clinical Practice Guidelines for Rare Diseases: The Orphanet Database. PLoS ONE. 2017;12:e0170365. doi: 10.1371/journal.pone.0170365. - DOI - PMC - PubMed
    1. Alonso-Coello P., Irfan A., Solà I., Gich I., Delgado-Noguera M.F., Rigau D., Tort S., Bonfill X., Burgers J., Schunemann H. The quality of clinical practice guidelines over the last two decades: A systematic review of guideline appraisal studies. BMJ Qual. Saf. Health Care. 2010;19:e58. doi: 10.1136/qshc.2010.042077. - DOI - PubMed
    1. Vega M.B., Benavent P.G., de Val M.S.I., Fernández C.M., Remón L.P., Sanchéz J.I.M., Diez M.P.B., Mérez M.P.C., Armesto S.G., del Pozo S.V.F., et al. Methodological Handbooks & Toolkit for Clinical Practice Guidelines and Clinical Decision Support Tools for Rare or Low Prevalence and Complex Diseases. European Reference Networks. 2020. [(accessed on 15 September 2022)]. Available online: https://www.google.com.hk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rj....
    1. Steeb T., Hayani K.M., Förster P., Liegl R., Toussaint F., Schlaak M., Berking C., Heppt M.V. Guidelines for uveal melanoma: A critical appraisal of systematically identified guidelines using the AGREE II and AGREE-REX instrument. J. Cancer Res. Clin. Oncol. 2020;146:1079–1088. doi: 10.1007/s00432-020-03141-w. - DOI - PMC - PubMed

Publication types

MeSH terms

Supplementary concepts

LinkOut - more resources