A Participatory Framework for Plain Language Clinical Management Guideline Development

Rita Francisco, Susana Alves, Catarina Gomes, Pedro Granjo, Carlota Pascoal, Sandra Brasil, Alice Neves, Inês Santos, Andrea Miller, Donna Krasnewich, Eva Morava, Christina Lam, Jaak Jaeken, Paula A. Videira and Vanessa dos Reis Ferreira ()
Additional contact information
Rita Francisco: Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Susana Alves: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Catarina Gomes: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Pedro Granjo: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Carlota Pascoal: Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Sandra Brasil: Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Alice Neves: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Inês Santos: CDG & Allies—Professionals and Patient Associations International Network (CDG & Allies-PPAIN), Department of Life Sciences, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Andrea Miller: CDG Care, Colorado Springs, CO 80937, USA
Donna Krasnewich: National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20814, USA
Eva Morava: Department of Clinical Genomics, Mayo Clinic, Rochester, MN 55905, USA
Christina Lam: Division of Genetic Medicine, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA 98195, USA
Jaak Jaeken: Centre of Metabolic Diseases, KU Leuven, 3000 Leuven, Belgium
Paula A. Videira: Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal
Vanessa dos Reis Ferreira: Associate Laboratory i4HB—Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal

IJERPH, 2022, vol. 19, issue 20, 1-13

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: clinical management guidelines; plain language; people-centric; congenital disorders of glycosylation (CDG); PMM2-CDG; rare diseases; participatory medicine; health literacy (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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