Use, applicability, and dissemination of patient versions of clinical practice guidelines in oncology in Germany: a qualitative interview study with healthcare providers.
Consumer health information
Healthcare providers
Oncology
Patient information
Patient version of clinical practice guidelines
Qualitative interviews
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:
04 Mar 2024
04 Mar 2024
Historique:
received:
07
06
2023
accepted:
23
01
2024
medline:
5
3
2024
pubmed:
5
3
2024
entrez:
4
3
2024
Statut:
epublish
Résumé
People with cancer have high information needs; however, they are often inadequately met. Patient versions of clinical practice guidelines (PVGs), a special form of evidence-based information, translate patient-relevant recommendations from clinical practice guidelines into lay language. To date, little is known about the experience of PVGs from healthcare providers' perspective in healthcare. This study aims to investigate the use, applicability, and dissemination of PVGs in oncology from the healthcare providers' perspective in Germany. Twenty semi-structured telephone interviews were conducted with oncological healthcare providers in Germany between October and December 2021. Interviews were recorded and transcribed verbatim. Mayring's qualitative content analysis with MAXQDA software was utilised to analyse the data. A total of 20 healthcare providers (14 female, 6 male), mainly working as psychotherapists/psycho-oncologists and physicians, participated. Most participants (75%) were aware of the existence of PVGs. The content was predominantly perceived as comprehensible and relevant, whereas opinions on the design and format were mixed. The perceived lack of up-to-date information limited participants' trust in the content. Most felt that PVGs positively impact healthcare owing to the fact that they improve patients' knowledge about their disease. Additionally, PVGs served as a guide and helped healthcare providers structure physician-patient talks. Healthcare provider's unawareness of the existence of PVGs was cited as an obstructive factor to its dissemination to patients. Limited knowledge of the existence of PVGs among healthcare providers, coupled with alternative patient information, hinders the use and dissemination of PVGs in healthcare. However, the applicability of PVGs seemed to be acceptable owing to their content and good comprehensibility, especially with respect to physician-patient communication.
Sections du résumé
BACKGROUND
BACKGROUND
People with cancer have high information needs; however, they are often inadequately met. Patient versions of clinical practice guidelines (PVGs), a special form of evidence-based information, translate patient-relevant recommendations from clinical practice guidelines into lay language. To date, little is known about the experience of PVGs from healthcare providers' perspective in healthcare. This study aims to investigate the use, applicability, and dissemination of PVGs in oncology from the healthcare providers' perspective in Germany.
METHODS
METHODS
Twenty semi-structured telephone interviews were conducted with oncological healthcare providers in Germany between October and December 2021. Interviews were recorded and transcribed verbatim. Mayring's qualitative content analysis with MAXQDA software was utilised to analyse the data.
RESULTS
RESULTS
A total of 20 healthcare providers (14 female, 6 male), mainly working as psychotherapists/psycho-oncologists and physicians, participated. Most participants (75%) were aware of the existence of PVGs. The content was predominantly perceived as comprehensible and relevant, whereas opinions on the design and format were mixed. The perceived lack of up-to-date information limited participants' trust in the content. Most felt that PVGs positively impact healthcare owing to the fact that they improve patients' knowledge about their disease. Additionally, PVGs served as a guide and helped healthcare providers structure physician-patient talks. Healthcare provider's unawareness of the existence of PVGs was cited as an obstructive factor to its dissemination to patients.
CONCLUSION
CONCLUSIONS
Limited knowledge of the existence of PVGs among healthcare providers, coupled with alternative patient information, hinders the use and dissemination of PVGs in healthcare. However, the applicability of PVGs seemed to be acceptable owing to their content and good comprehensibility, especially with respect to physician-patient communication.
Identifiants
pubmed: 38439061
doi: 10.1186/s12913-024-10626-8
pii: 10.1186/s12913-024-10626-8
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
272Informations de copyright
© 2024. The Author(s).
Références
Faller H, Koch U, Brähler E, Härter M, Keller M, Schulz H, et al. Satisfaction with information and unmet information needs in men and women with cancer. J Cancer Surviv. 2016;10(1):62–70. https://doi.org/10.1007/s11764-015-0451-1 . PubMed PMID: 25956402.
doi: 10.1007/s11764-015-0451-1
Halbach SM, Ernstmann N, Kowalski C, Pfaff H, Pförtner T-K, Wesselmann S, et al. Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment. Patient Educ Couns. 2016;99(9):1511–8. https://doi.org/10.1016/j.pec.2016.06.028 . PubMed PMID: 27378079.
doi: 10.1016/j.pec.2016.06.028
Kent EE, Arora NK, Rowland JH, Bellizzi KM, Forsythe LP, Hamilton AS, et al. Health information needs and health-related quality of life in a diverse population of long-term cancer survivors. Patient Educ Couns. 2012;89(2):345–52. https://doi.org/10.1016/j.pec.2012.08.014 . PubMed PMID: 23021856.
doi: 10.1016/j.pec.2012.08.014
Rood JAJ, Eeltink CM, van Zuuren FJ, Verdonck-de Leeuw IM, Huijgens PC. Perceived need for information of patients with haematological malignancies: a literature review. J Clin Nurs. 2015;24(3–4):353–69. https://doi.org/10.1111/jocn.12630 . PubMed PMID: 24890671.
doi: 10.1111/jocn.12630
Chaboyer W, Harbeck E, Lee BO, Grealish L. Missed nursing care: an overview of reviews. Kaohsiung J Med Sci. 2021;37(2):82–91. https://doi.org/10.1002/kjm2.12308 . PubMed PMID: 33022855.
doi: 10.1002/kjm2.12308
Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. National Academies Press; 2001.
Collet R, Major M, van Egmond M, van der Leeden M, Maccow R, Eskes A, et al. Experiences of interaction between people with cancer and their healthcare professionals: a systematic review and meta-synthesis of qualitative studies. Eur J Oncol Nurs. 2022;60:102198. https://doi.org/10.1016/j.ejon.2022.102198 . PubMed PMID: 36087381.
doi: 10.1016/j.ejon.2022.102198
Institute of Medicine. Health literacy: a prescription to end confusion. Washington, DC, USA: The National Academies Press; 2004.
Moore PM, Rivera S, Bravo-Soto GA, Olivares C, Lawrie TA. Communication skills training for healthcare professionals working with people who have cancer. Cochrane Database of Systematic Reviews. 2018;(7).
Fervers B, Carretier J, Bataillard A. Clinical practice guidelines. J Visc Surg. 2010;147(6):e341–9. https://doi.org/10.1016/j.jviscsurg.2010.10.010 . PubMed PMID: 21093403.
doi: 10.1016/j.jviscsurg.2010.10.010
Qaseem A, Forland F, Macbeth F, Ollenschläger G, Phillips S, van der Wees P. Guidelines International Network: toward international standards for clinical practice guidelines. Ann Intern Med. 2012;156(7):525–31. https://doi.org/10.7326/0003-4819-156-7-201204030-00009 . PubMed PMID: 22473437.
doi: 10.7326/0003-4819-156-7-201204030-00009
Institute of Medicine. Clinical practice guidelines we can trust. Washington, DC, USA: The National Academies Press; 2011.
Fearns N, Kelly J, Callaghan M, Graham K, Loudon K, Harbour R, et al. What do patients and the public know about clinical practice guidelines and what do they want from them? A qualitative study. BMC Health Serv Res. 2016;16:74. https://doi.org/10.1186/s12913-016-1319-4 . PubMed PMID: 27121606; PubMed Central PMCID: PMCPMC4847193.
doi: 10.1186/s12913-016-1319-4
Liira H, Saarelma O, Callaghan M, Harbour R, Jousimaa J, Kunnamo I, et al. Patients, health information, and guidelines: a focus-group study. Scand J Prim Health Care. 2015;33(3):212–9. https://doi.org/10.3109/02813432.2015.1067517 . PubMed PMID: 26205344; PubMed Central PMCID: PMCPMC4750726.
doi: 10.3109/02813432.2015.1067517
Institute of Medicine Committee to Advise the Public Health Service on Clinical Practice. G. Clinical Practice Guidelines: Directions for a New Program. Field MJ, Lohr KN, editors. Washington (DC), USA: The National Academies Press; 1990.
Santesso N, Morgano GP, Jack SM, Haynes RB, Hill S, Treweek S, et al. Dissemination of clinical practice guidelines: a content analysis of patient versions. Med Decis Making. 2016;36(6):692–702. https://doi.org/10.1177/0272989x16644427 . PubMed PMID: 27091380.
doi: 10.1177/0272989x16644427
Guidelines International Network (GIN). GIN Public Toolkit. Patient and public involvement in guidelines. 2021 [accessed 04.03.2023]. Available from: https://g-i-n.net/wp-content/uploads/2022/01/Toolkit-combined.pdf .
German Guideline Program in Oncology (GGPO). Patient versions of clinical guidelines. 2023 [accessed 02.05.2023]. Available from: https://www.leitlinienprogramm-onkologie.de/patientenleitlinien/ .
German Cancer Aid. Ordering information material. 2023 [accessed 02.05.2023]. Available from: https://www.krebshilfe.de/informieren/ueber-krebs/infothek/infomaterial-kategorie/patientenleitlinien/ .
Becker M, Buhn S, Meyer N, Blodt S, Carl G, Follmann M, et al. 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. https://doi.org/10.1136/bmjopen-2021-059040 . PubMed PMID: 35296489; PubMed Central PMCID: PMCPMC8928290.
doi: 10.1136/bmjopen-2021-059040
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. https://doi.org/10.1093/intqhc/mzm042 . PubMed PMID: 17872937.
doi: 10.1093/intqhc/mzm042
Blödt S, Erstling S, Becker M, Carl G, Follmann M, Frenz S, et al. Bekanntheit, Nutzung Und Einschätzung Der Patientenleitlinien Im Leitlinienprogramm Onkologie – Eine Umfrage Bei Patient:innen und Leistungserbringenden in Deutschland. Evidenzbasierte Medizin für eine bedarfsgerechte Gesundheitsversorgung 23 Jahrestagung Des Deutschen Netzwerks Evidenzbasierte Medizin. Düsseldorf: German Medical Science GMS Publishing House; 2022. Doc22ebmVS-8-04 2022.
OnkoZert, Onkolgische Zentren. 2022 [accessed 21.11.2022]. Available from: https://www.onkozert.de/onkologische-zentren/ .
Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: a systematic review of empirical tests. Soc Sci Med. 2022;292:114523. https://doi.org/10.1016/j.socscimed.2021.114523 . PubMed PMID: 34785096.
doi: 10.1016/j.socscimed.2021.114523
Kerr C, Nixon A, Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res. 2010;10(3):269–81. https://doi.org/10.1586/erp.10.30 . PubMed PMID: 20545592.
doi: 10.1586/erp.10.30
Mayring P. Qualitative content analysis. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research [Online Journal]. 2000. 10. 17169/ fqs-1. 2. 1089.
Akl EA, Meerpohl JJ, Elliott J, Kahale LA, Schunemann HJ, Living Systematic Review N. Living systematic reviews: 4. Living guideline recommendations. J Clin Epidemiol. 2017;91:47–53. https://doi.org/10.1016/j.jclinepi.2017.08.009 . PubMed PMID: 28911999.
doi: 10.1016/j.jclinepi.2017.08.009
Chen X, Hay JL, Waters EA, Kiviniemi MT, Biddle C, Schofield E, et al. Health Literacy and Use and trust in Health Information. J Health Commun. 2018;23(8):724–34. https://doi.org/10.1080/10810730.2018.1511658 . PubMed PMID: 30160641; PubMed Central PMCID: PMCPMC6295319.
doi: 10.1080/10810730.2018.1511658
Luo A, Qin L, Yuan Y, Yang Z, Liu F, Huang P, et al. The Effect of Online Health Information seeking on Physician-Patient relationships: systematic review. J Med Internet Res. 2022;24(2):e23354. PubMed PMID: 35142620; PubMed Central PMCID: PMCPMC8874798.
doi: 10.2196/23354
Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns. 2014;94(3):291–309. https://doi.org/10.1016/j.pec.2013.10.031 . PubMed PMID: 24305642.
doi: 10.1016/j.pec.2013.10.031
Wilson AD, Childs S, Gonçalves-Bradley DC, Irving GJ. Interventions to increase or decrease the length of primary care physicians’ consultation. Cochrane Database Syst Rev. 2016;2016(8):Cd003540. Epub 20160825. https://doi.org/10.1002/14651858.CD003540.pub3 . PubMed PMID: 27560697; PubMed Central PMCID: PMCPMC7154578.
Asan O, Yu Z, Crotty BH. How clinician-patient communication affects trust in health information sources: temporal trends from a national cross-sectional survey. PLoS ONE. 2021;16(2):e0247583. https://doi.org/10.1371/journal.pone.0247583 . PubMed PMID: 33630952; PubMed Central PMCID: PMCPMC7906335.
doi: 10.1371/journal.pone.0247583
German Cancer Aid. Blue Brochures. 2023 [accessed 06.02.2023]. Available from: https://www.krebshilfe.de/informieren/ueber-krebs/infothek/infomaterial-kategorie/die-blauen-ratgeber/ .
Krieger T, Salm S, Dresen A, Cecon N. Cancer patients’ experiences and preferences when receiving bad news: a qualitative study. J Cancer Res Clin Oncol. 2023;149(7):3859–70.
doi: 10.1007/s00432-022-04311-8
Brashers DE, Goldsmith DJ, Hsieh E. Information seeking and avoiding in Health contexts. Hum Commun Res. 2002;28(2):258–71. https://doi.org/10.1111/j.1468-2958.2002.tb00807.x .
doi: 10.1111/j.1468-2958.2002.tb00807.x
Xie B, Wang M, Feldman R, Zhou L. Internet use frequency and patient-centered care: measuring patient preferences for participation using the health information wants questionnaire. J Med Internet Res. 2013;15(7):e132. https://doi.org/10.2196/jmir.2615 . PubMed PMID: 23816979; PubMed Central PMCID: PMCPMC3714005.
doi: 10.2196/jmir.2615
Xie B, Wang M, Feldman R, Zhou L. Exploring older and younger adults’ preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ). Health Expect. 2014;17(6):795–808. https://doi.org/10.1111/j.1369-7625.2012.00804.x . PubMed PMID: 22783800; PubMed Central PMCID: PMCPMC5060927.
doi: 10.1111/j.1369-7625.2012.00804.x
Simons M, Rapport F, Zurynski Y, Stoodley M, Cullis J, Davidson AS. Links between evidence-based medicine and shared decision-making in courses for doctors in training: a scoping review. BMJ Open. 2022;12(4):e057335. https://doi.org/10.1136/bmjopen-2021-057335 . PubMed PMID: 35470193; PubMed Central PMCID: PMCPMC9039384.
doi: 10.1136/bmjopen-2021-057335
Cheyne S, Fraile Navarro D, Hill K, McDonald S, Tunnicliffe D, White H et al. Methods for living guidelines: early guidance based on practical experience. J Clin Epidemiol. 2023. Epub 20230110. https://doi.org/10.1016/j.jclinepi.2022.12.024 . PubMed PMID: 36639038.