Barriers and facilitators in developing patient versions of clinical practice guidelines - qualitative interviews on experiences of international guideline producers.
Development
Dissemination
Evidence-based patient information
Guideline development
Implementation
Methodology
Patient versions of clinical practice guidelines
Journal
BMC health services research
ISSN: 1472-6963
Titre abrégé: BMC Health Serv Res
Pays: England
ID NLM: 101088677
Informations de publication
Date de publication:
16 Jan 2024
16 Jan 2024
Historique:
received:
14
09
2023
accepted:
24
12
2023
medline:
17
1
2024
pubmed:
17
1
2024
entrez:
16
1
2024
Statut:
epublish
Résumé
Several guideline organizations produce patient versions of clinical practice guidelines (PVGs) which translate recommendations into simple language. A former study of our working group revealed that few guideline organizations publish their methods used to develop PVGs. Clear definitions of PVGs do not prevail and their purposes often remain unclear. We aimed to explore experts' perspectives on developing, disseminating and implementing PVGs to discuss and incorporate these experiences when consenting on methodological guidance and further improving PVGs. We conducted 17 semi-structured telephone interviews with international experts working with PVGs from September 2021 through January 2022. We conducted the interviews in English or German, they were recorded and transcribed verbatim. We utilized Mayring's qualitative content analysis with MAXQDA software to analyze the data. In two interviews two participants were interviewed at the same time. This resulted in a total of 19 participants from 16 different organizations and eight different countries participated. Most were female (16/19) and their experience in working with PVGs ranged from 1 to 20 years. All follow methodological standards when developing PVGs, but the extent of these standards and their public accessibility differs. Aims and target groups of PVGs vary between organizations. Facilitators for developing PVGs are working with a multidisciplinary team, financial resources, consultation processes and a high-quality underlying CPG. Facilitators for disseminating and implementing PVGs are using various strategies. Barriers, on the other hand, are the lack of these factors. All participants mentioned patient involvement as a key aspect in PVG development. The steps in the PVG development process are largely similar across the countries. Focus is placed on the involvement of patients in the development process, although the extent of participation varies. The experts collectively attribute great importance to PVGs overall, but in order to constantly adapt to medical progress and changing conditions, the focus in the future may be more on formats like living guidelines. Although there are different views on the mandatory development of PVGs, there is a consistent call for more transparency regarding the methodology used for PVGs.
Sections du résumé
BACKGROUND
BACKGROUND
Several guideline organizations produce patient versions of clinical practice guidelines (PVGs) which translate recommendations into simple language. A former study of our working group revealed that few guideline organizations publish their methods used to develop PVGs. Clear definitions of PVGs do not prevail and their purposes often remain unclear. We aimed to explore experts' perspectives on developing, disseminating and implementing PVGs to discuss and incorporate these experiences when consenting on methodological guidance and further improving PVGs.
METHODS
METHODS
We conducted 17 semi-structured telephone interviews with international experts working with PVGs from September 2021 through January 2022. We conducted the interviews in English or German, they were recorded and transcribed verbatim. We utilized Mayring's qualitative content analysis with MAXQDA software to analyze the data.
RESULTS
RESULTS
In two interviews two participants were interviewed at the same time. This resulted in a total of 19 participants from 16 different organizations and eight different countries participated. Most were female (16/19) and their experience in working with PVGs ranged from 1 to 20 years. All follow methodological standards when developing PVGs, but the extent of these standards and their public accessibility differs. Aims and target groups of PVGs vary between organizations. Facilitators for developing PVGs are working with a multidisciplinary team, financial resources, consultation processes and a high-quality underlying CPG. Facilitators for disseminating and implementing PVGs are using various strategies. Barriers, on the other hand, are the lack of these factors. All participants mentioned patient involvement as a key aspect in PVG development.
CONCLUSION
CONCLUSIONS
The steps in the PVG development process are largely similar across the countries. Focus is placed on the involvement of patients in the development process, although the extent of participation varies. The experts collectively attribute great importance to PVGs overall, but in order to constantly adapt to medical progress and changing conditions, the focus in the future may be more on formats like living guidelines. Although there are different views on the mandatory development of PVGs, there is a consistent call for more transparency regarding the methodology used for PVGs.
Identifiants
pubmed: 38229078
doi: 10.1186/s12913-023-10524-5
pii: 10.1186/s12913-023-10524-5
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
78Informations de copyright
© 2024. The Author(s).
Références
Institute of Medicine (US) Committee on Standards for Developing Trustworthy Clinical Practice Guidelines. In: Graham R, Mancher M, Wolman DM, Greenfield S, Steinberg E, editors. Clinical practice guidelines we can trust. Washington, D.C.: National Academies Press; 2011.
Qaseem A, Forland F, Macbeth F, Ollenschläger G, Phillips S, van der Wees P. Board of Trustees of the Guidelines International Network. Guidelines International Network: toward International standards for Clinical Practice guidelines. Ann Intern Med. 2012;156(7):525.
doi: 10.7326/0003-4819-156-7-201204030-00009
pubmed: 22473437
Loudon K, Santesso N, Callaghan M, Thornton J, Harbour J, Graham K, Harbour R, Kunnamo I, Liira H, McFarlane E, Ritchie K, Treweek S. Patient and public attitudes to and awareness of clinical practice guidelines: a systematic review with thematic and narrative syntheses. BMC Health Serv Res. 2014;14(1):321.
doi: 10.1186/1472-6963-14-321
pubmed: 25064372
pmcid: 4119247
Guidelines International Network (GIN). GIN Public Toolkit. Patient and public involvement in guidelines [Internet]. https://g-i-n.net/wp-content/uploads/2022/01/Toolkit-combined.pdf . [cited 2023 Mar 15]. Available from: https://g-i-n.net/wp-content/uploads/2022/01/Toolkit-combined.pdf.
van der Weijden T, Dreesens D, Faber MJ, Bos N, Drenthen T, Maas I, Kersten S, Malanda U, van der Scheur S, Post H, Knops A. Developing quality criteria for patient-directed knowledge tools related to clinical practice guidelines. A development and consensus study. Health Expect. 2019;22(2):201–8.
doi: 10.1111/hex.12843
pubmed: 30417517
Dreesens D, Kremer L, Burgers J, van der Weijden T. Lost in definitions: reducing duplication and clarifying definitions of knowledge and decision support tools. A RAND-modified Delphi consensus study. Health Policy (New York). 2020;124(5):531–9.
doi: 10.1016/j.healthpol.2020.02.005
Wang X, Chen Y, Akl EA, Tokalic R, Marusic A, Qaseem A, Falck-Ytter Y, Lee MS, Siedler M, Barber SL, Zhang M, Chan ESY, Estill J, Kwong JSW, Okumura A, Zhou Q, Yang K, Norris SL. group R working. The reporting checklist for public versions of guidelines: RIGHT-PVG. Implement Sci [Internet]. 2021;16(1):10. Available from: http://ovidsp.ovid.com/ovidweb.cgi?T=JS &PAGE=reference&D=med18&NEWS=N&AN=33430911.
Meyer N, Hellbrecht I, Breuing J, Hauprich J, Wahlen S, Könsgen N, Bühn S, Becker M, Blödt S, Carl G, Follmann M, Frenz S, Langer T, Nothacker M, Santesso N, Schaefer C, Pieper D. Heterogeneous methodology in the development of patient versions of clinical practice guidelines: a scoping review. J Clin Epidemiol. 2023;161:53–64.
doi: 10.1016/j.jclinepi.2023.07.005
pubmed: 37482111
Becker M, Bühn S, Meyer N, Blödt S, Carl G, Follmann M, Frenz S, Langer T, Nothacker M, Santesso N, Schaefer C, Pieper D. Investigating the role and applicability of patient versions of guidelines in oncology and deriving recommendations for the development, dissemination and implementation of patient versions in Germany: protocol for multiphase study. BMJ Open. 2022;12(3):e059040.
doi: 10.1136/bmjopen-2021-059040
pubmed: 35296489
pmcid: 8928290
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.
doi: 10.1093/intqhc/mzm042
pubmed: 17872937
Santesso N, Morgano GP, Jack SM, Haynes RB, Hill S, Treweek S, Schünemann HJ, Callaghan M, Graham K, Harbour R, Kunnamo I, Liira H, Loudon K, McFarlane E, Ritchie K, Service D, Thornton J. Dissemination of clinical practice guidelines: a content analysis of patient versions. Med Decis Making. 2016;36(6):692–702.
doi: 10.1177/0272989X16644427
pubmed: 27091380
Zoom Video Communications Inc. Zoom. URL: https://zoom.us/; 2023.
Digitalmeister GmbH. Abtipper.de - transcription of interviews. URL: https://www.abtipper.de ; 2023.
DeepL SE. DeepL Translator. URL: https://www.deepl.com/de/publisher/ . 2023.
Mayring P. Qualitative content analysis. Forum Qualitative Sozialforschung Forum: Qualitative Social Research. 2000;1(2).
VERBI – Software. Consult. Sozialforschung. GmbH. MAXQDA. Berlin: URL; 2023. https://www.maxqda.com/de .
UNESCO Institute for Statistics. International Standard Classification of Education ISCED. 2011. ISBN 978-92-9189-123-8, URL: https://uis.unesco.org/sites/default/files/documents/international-standard-classification-of-education-isced-2011-en.pdf ; 2012.
Deutsches Netzwerk Evidenzbasierte Medizin. Gute Praxis Gesundheitsinformation. Berlin; 2015.
Patient Information Forum. Patient Information Forum. https://pifonline.org.uk . 2023.
Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. A systematic review of the impact of patient and public involvement on service users, Researchers and communities. The Patient - Patient-Centered Outcomes Research. 2014;7(4):387–95.
doi: 10.1007/s40271-014-0065-0
pubmed: 25034612
Bryant EA, Scott AM, Greenwood H, Thomas R. Patient and public involvement in the development of clinical practice guidelines: a scoping review. BMJ Open. 2022;12(9):e055428.
doi: 10.1136/bmjopen-2021-055428
pubmed: 36171042
pmcid: 9528587
van Overbeeke E, Vanbinst I, Jimenez-Moreno AC, Huys I. Patient centricity in patient preference studies: the patient perspective. Front Med (Lausanne). 2020;7.
Armstrong MJ, Rueda J, Gronseth GS, Mullins CD. Framework for enhancing clinical practice guidelines through continuous patient engagement. Health Expect. 2017;20(1):3–10.
doi: 10.1111/hex.12467
pubmed: 27115476
Ärztliches Zentrum für Qualität in der Medizin (ÄZQ)., Office des Leitlinienprogramms Onkologie (OL), AWMF-Institut für Medizinisches Wissensmanagement (AWMF-IMWi). Erstellung von Patientenleitlinien zu S3-Leitlinien/NVL im Rahmen der Leitlinienprogramme. Methodenreport. [Internet]. 2. Auflage, Version 1.; 2019 [cited 2023 Mar 15]. Available from: https://www.aezq.de/mdb/downloads/nvl/methodik/erstellung-pll-mr-nvl-ol-2aufl-vers1.pdf/# .
Wahlen S, Breuing J, Becker M, Bühn S, Hauprich J, Könsgen N, Meyer N, Blödt S, Carl G, Follmann M, Frenz S, Langer T, Schaefer C, Pieper D. Use, applicability and, dissemination of patient versions of clinical practice guidelines in oncology in Germany: a qualitative interview study with healthcare providers (Preprint). BMC Health Serv Res. 2023.