Continuous adaptation of conversation aids for uterine fibroids treatment options in a four-year multi-center implementation project.


Journal

BMC medical informatics and decision making
ISSN: 1472-6947
Titre abrégé: BMC Med Inform Decis Mak
Pays: England
ID NLM: 101088682

Informations de publication

Date de publication:
30 Sep 2024
Historique:
received: 14 03 2023
accepted: 19 08 2024
medline: 1 10 2024
pubmed: 1 10 2024
entrez: 1 10 2024
Statut: epublish

Résumé

Fibroids are non-cancerous uterine growths that can cause symptoms impacting quality of life. The breadth of treatment options allows for patient-centered preference. While conversation aids are known to facilitate shared decision making, the implementation of these aids for uterine fibroids treatments is limited. We aimed to develop two end-user-acceptable uterine fibroids conversation aids for an implementation project. Our second aim was to outline the adaptations that were made to the conversation aids as implementation occurred. We used a multi-phase user-centered participatory approach to develop a text-based and picture-enhanced conversation aid for uterine fibroids. We conducted a focus group with project stakeholders and user-testing interviews with eligible individuals with symptomatic uterine fibroids. We analyzed the results of the user-testing interviews using Morville's Honeycomb framework. Spanish translations of the conversation aids occurred in parallel with the English iterations. We documented the continuous adaptations of the conversation aids that occurred during the project using an expanded framework for reporting adaptations and modifications to evidence-based interventions (FRAME). The first iteration of the conversation aids was developed in December 2018. Focus group participants (n = 6) appreciated the brevity of the tools and suggested changes to the bar graphs and illustrations used in the picture-enhanced version. User-testing with interview participants (n = 9) found that both conversation aids were satisfactory, with minor changes suggested. However, during implementation, significant changes were suggested by patients, other stakeholders, and participating clinicians when they reviewed the content. The most significant changes required the addition or deletion of information about treatment options as newer research was published or as novel interventions were introduced into clinical practice. This multi-year project revealed the necessity of continuously adapting the uterine fibroids conversation aids so they remain acceptable in an implementation and sustainability context. Therefore, it is important to seek regular user feedback and plan for the need to undertake updates and revisions to conversation aids if they are going to be acceptable for clinical use.

Sections du résumé

BACKGROUND BACKGROUND
Fibroids are non-cancerous uterine growths that can cause symptoms impacting quality of life. The breadth of treatment options allows for patient-centered preference. While conversation aids are known to facilitate shared decision making, the implementation of these aids for uterine fibroids treatments is limited. We aimed to develop two end-user-acceptable uterine fibroids conversation aids for an implementation project. Our second aim was to outline the adaptations that were made to the conversation aids as implementation occurred.
METHODS METHODS
We used a multi-phase user-centered participatory approach to develop a text-based and picture-enhanced conversation aid for uterine fibroids. We conducted a focus group with project stakeholders and user-testing interviews with eligible individuals with symptomatic uterine fibroids. We analyzed the results of the user-testing interviews using Morville's Honeycomb framework. Spanish translations of the conversation aids occurred in parallel with the English iterations. We documented the continuous adaptations of the conversation aids that occurred during the project using an expanded framework for reporting adaptations and modifications to evidence-based interventions (FRAME).
RESULTS RESULTS
The first iteration of the conversation aids was developed in December 2018. Focus group participants (n = 6) appreciated the brevity of the tools and suggested changes to the bar graphs and illustrations used in the picture-enhanced version. User-testing with interview participants (n = 9) found that both conversation aids were satisfactory, with minor changes suggested. However, during implementation, significant changes were suggested by patients, other stakeholders, and participating clinicians when they reviewed the content. The most significant changes required the addition or deletion of information about treatment options as newer research was published or as novel interventions were introduced into clinical practice.
CONCLUSIONS CONCLUSIONS
This multi-year project revealed the necessity of continuously adapting the uterine fibroids conversation aids so they remain acceptable in an implementation and sustainability context. Therefore, it is important to seek regular user feedback and plan for the need to undertake updates and revisions to conversation aids if they are going to be acceptable for clinical use.

Identifiants

pubmed: 39350254
doi: 10.1186/s12911-024-02637-6
pii: 10.1186/s12911-024-02637-6
doi:

Types de publication

Journal Article Multicenter Study

Langues

eng

Sous-ensembles de citation

IM

Pagination

277

Informations de copyright

© 2024. The Author(s).

Références

American College of Obstetricians and Gynecologists’ Committee on Practice Bulletins–Gynecology. Management of symptomatic uterine leiomyomas: ACOG Practice Bulletin, Number 228. Obstet Gynecol. 2021;137:e100–15.
doi: 10.1097/AOG.0000000000004401
Laughlin-Tommaso SK, Jacoby VL, Myers ER. Disparities in fibroid incidence, prognosis, and management. https://doi.org/10.1016/j.ogc.2016.11.007 .
Myers ER, Barber MD, Gustilo-Ashby T, Couchman G, Matchar DB, McCrory DC. Management of Uterine Leiomyomata. Obstet Gynecol. 2002;100:8–17.
pubmed: 12100798
Viswanathan M, Hartmann K, McKoy N, Stuart G, Rankins N, Thieda P, Lux LJ, Lohr KN. Management of uterine fibroids: an update of the evidence. Evid Rep Technol Assess (Full Rep). 2007;(154):1–122.
Scalia P, Durand M-A, Berkowitz JL, Ramesh NP, Faber MJ, Kremer JAM, et al. The impact and utility of encounter patient decision aids: Systematic review, meta-analysis and narrative synthesis. Patient Educ Couns. 2019;102:817–41.
doi: 10.1016/j.pec.2018.12.020 pubmed: 30612829
Dobler CC, Sanchez M, Gionfriddo MR, Alvarez-Villalobos NA, Singh Ospina N, Spencer-Bonilla G, et al. Impact of decision aids used during clinical encounters on clinician outcomes and consultation length: a systematic review. BMJ Qual Saf. 2019;28:499–510.
doi: 10.1136/bmjqs-2018-008022 pubmed: 30301874
Elwyn G, Lloyd A, Joseph-Williams N, Cording E, Thomson R, Durand M-A, et al. Option Grids: shared decision making made easier. Patient Educ Couns. 2013;90:207–12.
doi: 10.1016/j.pec.2012.06.036 pubmed: 22854227
Durand M-A, Yen RW, O’Malley AJ, Schubbe D, Politi MC, Saunders CH, et al. What matters most: randomized controlled trial of breast cancer surgery conversation aids across socioeconomic strata. Cancer. 2020. https://doi.org/10.1002/cncr.33248 .
Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ. 2006;333:417.
doi: 10.1136/bmj.38926.629329.AE pubmed: 16908462 pmcid: 1553508
Aarts JWM, Thompson R, Foster TC, Elwyn G. Training physicians to use an encounter decision aid in routine gynecology: Impact on knowledge, attitudes, and intentions. Eur J Pers Cent Healthc. 2019;7:70–4.
Aarts JWM, Thompson R, Alam SS, Dannenberg M, Elwyn G, Foster TC. Encounter decision aids to facilitate shared decision-making with women experiencing heavy menstrual bleeding or symptomatic uterine fibroids: A before-after study. Patient Educ Couns. 2021;104:2259–65.
doi: 10.1016/j.pec.2021.02.027 pubmed: 33632633
Kessels RPC. Patients’ Memory for Medical Information. J R Soc Med. 2003;96:219–22.
pubmed: 12724430 pmcid: 539473
Sudore RL, Schillinger D. Interventions to Improve Care for Patients with Limited Health Literacy. J Clin Outcomes Manag. 2009;16:20–9.
pubmed: 20046798 pmcid: 2799039
Alberto PA, Fredrick L, Hughes M, Cihak D. Components of Visual Literacy. 2007;22:234–43.
Hill B, Perri-Moore S, Kuang J, Bray BE, Ngo L, Doig A, et al. Automated pictographic illustration of discharge instructions with Glyph: Impact on patient recall and satisfaction. J Am Med Inform Assoc. 2016;23:1136–42.
doi: 10.1093/jamia/ocw019 pubmed: 27234601 pmcid: 5070521
Schubbe D, Scalia P, Yen RW, Saunders CH, Cohen S, Elwyn G, et al. Using pictures to convey health information: A systematic review and meta-analysis of the effects on patient and consumer health behaviors and outcomes. Patient Educ Couns. 2020. https://doi.org/10.1016/j.pec.2020.04.010 .
Scalia P, Schubbe DC, Lu ES, Durand M-A, Frascara J, Noel G, et al. Comparing the impact of an icon array versus a bar graph on preference and understanding of risk information: Results from an online, randomized study. PLoS ONE. 2021;16: e0253644.
doi: 10.1371/journal.pone.0253644 pubmed: 34297713 pmcid: 8301663
Scalia P, O’Malley AJ, Durand M-A, Goodney PP, Elwyn G. Presenting time-based risks of stroke and death for Patients facing carotid stenosis treatment options: Patients prefer pie charts over icon arrays. Patient Educ Couns. 2019;102:1939–44.
doi: 10.1016/j.pec.2019.05.004 pubmed: 31101429
Coulter A, Stilwell D, Kryworuchko J, Mullen PD, Ng CJ, van der Weijden T. A systematic development process for patient decision aids. BMC Med Inform Decis Mak. 2013;13 Suppl 2(Suppl 2):S2.
doi: 10.1186/1472-6947-13-S2-S2 pubmed: 24625093
Vaisson G, Provencher T, Dugas M, Trottier M-È, Chipenda Dansokho S, Colquhoun H, et al. User involvement in the design and development of patient decision aids and other personal health tools: a systematic review. Med Decis Mak. 2021;41:261–74.
doi: 10.1177/0272989X20984134
Dopp AR, Parisi KE, Munson SA, Lyon AR. A glossary of user-centered design strategies for implementation experts. Transl Behav Med. 2019;9:1057–64.
doi: 10.1093/tbm/iby119 pubmed: 30535343
Scalia P, Durand M-A, Forcino RC, Schubbe D, Barr PJ, O’Brien N, et al. Implementation of the uterine fibroids Option Grid patient decision aids across five organizational settings: a randomized stepped-wedge study protocol. Implement Sci. 2019;14:88.
doi: 10.1186/s13012-019-0933-z pubmed: 31477140 pmcid: 6721118
Grande SW, Faber MJ, Durand M-A, Thompson R, Elwyn G. A classification model of patient engagement methods and assessment of their feasibility in real-world settings. Patient Educ Couns. 2014;95:281–7.
doi: 10.1016/j.pec.2014.01.016 pubmed: 24582473
Wiltsey Stirman S, Baumann AA, Miller CJ. The FRAME: an expanded framework for reporting adaptations and modifications to evidence-based interventions. Implement Sci. 2019;14:58.
doi: 10.1186/s13012-019-0898-y pubmed: 31171014 pmcid: 6554895
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;19:349–57.
doi: 10.1093/intqhc/mzm042 pubmed: 17872937
Meet Our Experts. EBSCO Information Services, Inc. | www.ebsco.com . https://www.ebsco.com/clinical-decisions/dynamed-solutions/about/meet-our-experts . Accessed 9 May 2022.
Evidence-Based Methodology. EBSCO Information Services, Inc. | www.ebsco.com . https://www.ebsco.com/clinical-decisions/dynamed-solutions/about/evidence-based-process/methodology . Accessed 9 May 2022.
User Experience Design. Semantic Studios. 2004. http://semanticstudios.com/user_experience_design/ . Accessed 30 Sep 2019.
Giguere A, Legare F, Grad R, Pluye P, Rousseau F, Brian Haynes R, et al. Developing and user-testing Decision boxes to facilitate shared decision making in primary care - a study protocol. BMC Med Inform Decis Mak. 2011;11:17.
doi: 10.1186/1472-6947-11-17 pubmed: 21385470 pmcid: 3060840
Rosenbaum SE, Glenton C, Cracknell J. User experiences of evidence-based online resources for health professionals: user testing of The Cochrane Library. BMC Med Inform Decis Mak. 2008;8:34.
doi: 10.1186/1472-6947-8-34 pubmed: 18662382 pmcid: 2529276
Scalia P, Durand M-A, Faber M, Kremer JA, Song J, Elwyn G. User-testing an interactive option grid decision aid for prostate cancer screening: lessons to improve usability. https://doi.org/10.1136/bmjopen-2017 .
Liu TP, Wu XY, Pei SUN, Wang HW. Frameworks for exploring the user experience of mobile apps. DEStech Transactions on Environment, Energy and Earth Sciences. 2016; seeie.
Mohler P, Dorer B, De Jong J, Hu M, Harkness J, Mohler PP. Cross-cultural survey guidelines translation: overview. 2010.
van Weert JCM, Alblas MC, van Dijk L, Jansen J. Preference for and understanding of graphs presenting health risk information. The role of age, health literacy, numeracy and graph literacy. Patient Educ Couns. 2021;104:109–17.
doi: 10.1016/j.pec.2020.06.031 pubmed: 32727670
Durand M-A, Yen RW, O’Malley J, Elwyn G, Mancini J. Graph literacy matters: examining the association between graph literacy, health literacy, and numeracy in a Medicaid eligible population. PLoS One. 2020;15:e0241844.
doi: 10.1371/journal.pone.0241844 pubmed: 33175891 pmcid: 7657552
Bunzli S, Nelson E, Scott A, French S, Choong P, Dowsey M. Barriers and facilitators to orthopaedic surgeons’ uptake of decision aids for total knee arthroplasty: a qualitative study. BMJ Open. 2017;7:e018614.
doi: 10.1136/bmjopen-2017-018614 pubmed: 29133333 pmcid: 5695436
Dopp AR, Parisi KE, Munson SA, Lyon AR. Aligning implementation and user-centered design strategies to enhance the impact of health services: results from a concept mapping study. Implement Sci Commun. 2020;1:17.
doi: 10.1186/s43058-020-00020-w pubmed: 32885179 pmcid: 7427975
Holtrop JS, Scherer LD, Matlock DD, Glasgow RE, Green LA. The importance of mental models in implementation science. Front Public Health. 2021;9.
doi: 10.3389/fpubh.2021.680316 pubmed: 34295871 pmcid: 8290163
Gesell SB, Prvu Bettger J, Lawrence RH, Li J, Hoffman J, Lutz BJ, et al. Implementation of complex interventions: lessons learned from the patient-centered outcomes research institute transitional care portfolio. Med Care. 2021;59(Suppl 4):S344–54.
doi: 10.1097/MLR.0000000000001591 pubmed: 34228016 pmcid: 8263141
van den Muijsenbergh METC, LeMaster JW, Shahiri P, Brouwer M, Hussain M, Dowrick C, et al. Participatory implementation research in the field of migrant health: Sustainable changes and ripple effects over time. Health Expect. 2020;23:306–17.
doi: 10.1111/hex.13034 pubmed: 32035009 pmcid: 7104649
Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci. 2009;4:50.
doi: 10.1186/1748-5908-4-50 pubmed: 19664226 pmcid: 2736161
Grande SW, Durand M-A, Fisher ES, Elwyn G. Physicians as part of the solution? Community-based participatory research as a way to get shared decision making into practice. J Gen Intern Med. 2014;29:219–22.
doi: 10.1007/s11606-013-2602-2 pubmed: 24002635

Auteurs

Danielle Schubbe (D)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.

Marie-Anne Durand (MA)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.
Unisanté, Centre universitaire de médecine générale et santé publique, Rue du Bugnon 44, Lausanne, CH-1011, Switzerland.

Rachel C Forcino (RC)

Department of Population Health, University of Kansas School of Medicine, Kansas City, KS, USA.

Jaclyn Engel (J)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.

Marisa Tomaino (M)

Rutgers Institute for Nicotine & Tobacco Studies, New Brunswick, NJ, USA.

Monica Adams-Foster (M)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.

Carla Bacon (C)

National Uterine Fibroids Foundation, Colorado Springs, CO, 80909, USA.

Carrie Cahill Mulligan (CC)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.

Sateria Venable (S)

Fibroid Foundation, 10319 Westlake Dr, Suite 102, Bethesda, MD, 20817, USA.

Tina Foster (T)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.

Paul J Barr (PJ)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.

Raymond M Anchan (RM)

Department of Obstetrics, Gynecology & Reproductive Biology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

Shannon Laughlin-Tommaso (S)

Department of Obstetrics and Gynecology, Mayo Clinic, Rochester, MN, USA.

Anne Lindholm (A)

Department of Obstetrics, Gynecology & Reproductive Biology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

Maya Seshan (M)

Department of Obstetrics, Gynecology & Reproductive Biology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

Rossella M Gargiulo (RM)

Department of Obstetrics, Gynecology & Reproductive Biology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

Patricia Stephenson (P)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.

Karen George (K)

Department of Obstetrics and Gynecology, Larner College of Medicine, University of Vermont, Burlington, VT, USA.

Mobolaji Ajao (M)

Department of Obstetrics, Gynecology & Reproductive Biology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

Tessa Madden (T)

Department of Surgery, Division of Public Health Sciences, Washington University School of Medicine, St. Louis, MO, USA.

Erika Banks (E)

Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine, Montefiore Medical Center, Bronx, NY, USA.

Antonio R Gargiulo (AR)

Department of Obstetrics, Gynecology & Reproductive Biology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

James O'Malley (J)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA.

Maria van den Muijsenbergh (M)

Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.

Johanna W M Aarts (JWM)

Department of Obstetrics and Gynaecology, Cancer Center Amsterdam, Amsterdam UMC, Amsterdam, The Netherlands.

Glyn Elwyn (G)

The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, One Medical Center Drive, Williamson Translational Research Building Level 5, Lebanon, NH, 03756, USA. glynelwyn@gmail.com.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH