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Published in: BMC Medical Informatics and Decision Making 1/2020

Open Access 01-12-2020 | Research article

Pelvic organ prolapse and treatment decisions– developing an online preference-sensitive tool to support shared decisions

Authors: Mette Hulbaek, Eva Knutz, Niels Teglhus Ebbesen, Jette Primdahl, Jesper Bo Nielsen, Regner Birkelund

Published in: BMC Medical Informatics and Decision Making | Issue 1/2020

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Abstract

Background

Female patients with pelvic organ prolapse and clinicians need to take decisions regarding treatment that are often unpredictable in relation to how they impact the future everyday lives of the patients.
This study formed the developmental phase of a larger study to develop and test an online tool to support shared decision-making.

Methods

Patients, health care professionals and other stakeholders participated in the development and evaluation process of this tool. The collected data was generated from observational studies, exploratory interviews with prompt cards and workshops with end users from four Danish gynecology outpatient clinics.

Results

Content analysis led to important themes. For the patients three themes emerged: 1) how the impact of symptoms on everyday life affected the need for relief, 2) their bodily perception and sex life and 3) their worries about the future. For clinicians the different symptoms and their severity was a main theme.

Conclusions

This article provides an overall description and discussion of the development methodology. It demonstrates how user involvement informed the prototyping process and how patients’ preferences were included in the final prototype. Whether the tool actually increases SDM, remains to be tested in a pilot feasibility study.
Literature
1.
go back to reference Thokala P, Devlin N, Marsh K, Baltussen R, Boysen M, Kalo Z, et al. Multiple criteria decision analysis for health care decision making-an introduction: report 1 of the ISPOR MCDA emerging good practices task force. Value Health. 2016;19(1):1–13.PubMedCrossRef Thokala P, Devlin N, Marsh K, Baltussen R, Boysen M, Kalo Z, et al. Multiple criteria decision analysis for health care decision making-an introduction: report 1 of the ISPOR MCDA emerging good practices task force. Value Health. 2016;19(1):1–13.PubMedCrossRef
2.
go back to reference Abrams P, Cardozo L, Wagg A, Wein A. Incontinence 6th edition. 6th ed. Bristol: ICI-ICS. International Continence Society; 2017. Abrams P, Cardozo L, Wagg A, Wein A. Incontinence 6th edition. 6th ed. Bristol: ICI-ICS. International Continence Society; 2017.
3.
go back to reference Barber MD, Maher C. Epidemiology and outcome assessment of pelvic organ prolapse. Int Urogynecol J. 2013;24(11):1783–90.PubMedCrossRef Barber MD, Maher C. Epidemiology and outcome assessment of pelvic organ prolapse. Int Urogynecol J. 2013;24(11):1783–90.PubMedCrossRef
4.
go back to reference Chan SS, Cheung RY, Yiu KW, Lee LL, Pang AW, Chung TK. Symptoms, quality of life, and factors affecting women's treatment decisions regarding pelvic organ prolapse. Int Urogynecol J. 2012;23(8):1027–33.PubMedCrossRef Chan SS, Cheung RY, Yiu KW, Lee LL, Pang AW, Chung TK. Symptoms, quality of life, and factors affecting women's treatment decisions regarding pelvic organ prolapse. Int Urogynecol J. 2012;23(8):1027–33.PubMedCrossRef
5.
go back to reference Mouritsen L, Larsen JP. Symptoms, bother and POPQ in women referred with pelvic organ prolapse. Int Urogynecol J Pelvic Floor Dysfunct. 2003;14(2):122–7.PubMedCrossRef Mouritsen L, Larsen JP. Symptoms, bother and POPQ in women referred with pelvic organ prolapse. Int Urogynecol J Pelvic Floor Dysfunct. 2003;14(2):122–7.PubMedCrossRef
6.
go back to reference Jelovsek JE, Maher C, Barber MD. Pelvic organ prolapse. Lancet (London, England). 2007;369(9566):1027–38.CrossRef Jelovsek JE, Maher C, Barber MD. Pelvic organ prolapse. Lancet (London, England). 2007;369(9566):1027–38.CrossRef
7.
go back to reference Weber AM, Abrams P, Brubaker L, Cundiff G, Davis G, Dmochowski RR, et al. The standardization of terminology for researchers in female pelvic floor disorders. Int Urogynecol J Pelvic Floor Dysfunct. 2001;12(3):178–86.PubMedPubMedCentralCrossRef Weber AM, Abrams P, Brubaker L, Cundiff G, Davis G, Dmochowski RR, et al. The standardization of terminology for researchers in female pelvic floor disorders. Int Urogynecol J Pelvic Floor Dysfunct. 2001;12(3):178–86.PubMedPubMedCentralCrossRef
8.
go back to reference Hagen S, Stark D. Conservative prevention and management of pelvic organ prolapse in women. Cochrane Database Syst Rev. 2011;12:Cd003882. Hagen S, Stark D. Conservative prevention and management of pelvic organ prolapse in women. Cochrane Database Syst Rev. 2011;12:Cd003882.
9.
go back to reference Maher C, Feiner B, Baessler K, Christmann-Schmid C, Haya N, Brown J. Surgery for women with anterior compartment prolapse. Cochrane Database Syst Rev. 2016;11:Cd004014.PubMed Maher C, Feiner B, Baessler K, Christmann-Schmid C, Haya N, Brown J. Surgery for women with anterior compartment prolapse. Cochrane Database Syst Rev. 2016;11:Cd004014.PubMed
10.
go back to reference Dumoulin C, Hunter KF, Moore K, Bradley CS, Burgio KL, Hagen S, et al. Conservative management for female urinary incontinence and pelvic organ prolapse review 2013: summary of the 5th international consultation on incontinence. NeurourolUrodyn. 2016;35(1):15–20. Dumoulin C, Hunter KF, Moore K, Bradley CS, Burgio KL, Hagen S, et al. Conservative management for female urinary incontinence and pelvic organ prolapse review 2013: summary of the 5th international consultation on incontinence. NeurourolUrodyn. 2016;35(1):15–20.
11.
go back to reference Gutman RE, Ford DE, Quiroz LH, Shippey SH, Handa VL. Is there a pelvic organ prolapse threshold that predicts pelvic floor symptoms? Am J Obstet Gynecol. 2008;199(6):683.e1–7.CrossRef Gutman RE, Ford DE, Quiroz LH, Shippey SH, Handa VL. Is there a pelvic organ prolapse threshold that predicts pelvic floor symptoms? Am J Obstet Gynecol. 2008;199(6):683.e1–7.CrossRef
12.
go back to reference Ellerkmann RM, Cundiff GW, Melick CF, Nihira MA, Leffler K, Bent AE. Correlation of symptoms with location and severity of pelvic organ prolapse. Am J Obstet Gynecol. 2001;185(6):1332–7 discussion 7-8.PubMedCrossRef Ellerkmann RM, Cundiff GW, Melick CF, Nihira MA, Leffler K, Bent AE. Correlation of symptoms with location and severity of pelvic organ prolapse. Am J Obstet Gynecol. 2001;185(6):1332–7 discussion 7-8.PubMedCrossRef
13.
go back to reference Miedel A, Tegerstedt G, Maehle-Schmidt M, Nyren O, Hammarstrom M. Symptoms and pelvic support defects in specific compartments. Obstet Gynecol. 2008;112(4):851–8.PubMedCrossRef Miedel A, Tegerstedt G, Maehle-Schmidt M, Nyren O, Hammarstrom M. Symptoms and pelvic support defects in specific compartments. Obstet Gynecol. 2008;112(4):851–8.PubMedCrossRef
14.
go back to reference Abhyankar P, Uny I, Semple K, Wane S, Hagen S, Wilkinson J, et al. Women's experiences of receiving care for pelvic organ prolapse: a qualitative study. BMC Womens Health. 2019;19(1):45.PubMedPubMedCentralCrossRef Abhyankar P, Uny I, Semple K, Wane S, Hagen S, Wilkinson J, et al. Women's experiences of receiving care for pelvic organ prolapse: a qualitative study. BMC Womens Health. 2019;19(1):45.PubMedPubMedCentralCrossRef
15.
go back to reference Coulter A. Engaging patients in healthcare. Maidenhead Berkshire: Open University Press; 2011. Coulter A. Engaging patients in healthcare. Maidenhead Berkshire: Open University Press; 2011.
17.
go back to reference Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns. 2006;60(3):301–12.PubMedCrossRef Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns. 2006;60(3):301–12.PubMedCrossRef
18.
go back to reference Dahl Steffensen K, Hjelholt Baker V, Vinter MM. Implementing shared decision making in Denmark: first steps and future focus areas. Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen. 2017;123–124:36–40.PubMedCrossRef Dahl Steffensen K, Hjelholt Baker V, Vinter MM. Implementing shared decision making in Denmark: first steps and future focus areas. Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen. 2017;123–124:36–40.PubMedCrossRef
19.
go back to reference Videnscenter for Brugerinddragelse i Sundhedsvæsenet (ViBIS). Læger og sygeplejerskers forståelse af patientinddragelse. En spørgeskemaundersøgelse blandt ansatte på hospitaler. (physicians and nurses understanding of the concept of patient involvement. An interview study among hospital staff); 2014. Report No.: 978–87–996473-1-6. Videnscenter for Brugerinddragelse i Sundhedsvæsenet (ViBIS). Læger og sygeplejerskers forståelse af patientinddragelse. En spørgeskemaundersøgelse blandt ansatte på hospitaler. (physicians and nurses understanding of the concept of patient involvement. An interview study among hospital staff); 2014. Report No.: 978–87–996473-1-6.
20.
go back to reference Elwyn G, Durand MA, Song J, Aarts J, Barr PJ, Berger Z, et al. A three-talk model for shared decision making: multistage consultation process. BMJ (Clinical research ed). 2017;359:j4891.CrossRef Elwyn G, Durand MA, Song J, Aarts J, Barr PJ, Berger Z, et al. A three-talk model for shared decision making: multistage consultation process. BMJ (Clinical research ed). 2017;359:j4891.CrossRef
21.
go back to reference Stacey D, Legare F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;4:Cd001431.PubMed Stacey D, Legare F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;4:Cd001431.PubMed
22.
go back to reference 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 (Clinical research ed). 2006;333(7565):417.CrossRef 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 (Clinical research ed). 2006;333(7565):417.CrossRef
23.
go back to reference 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:S2.PubMedCrossRef 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:S2.PubMedCrossRef
24.
go back to reference Joseph-Williams N, Newcombe R, Politi M, Durand MA, Sivell S, Stacey D, et al. Toward minimum standards for certifying patient decision aids: a modified Delphi consensus process. Medical Decision Making. 2014;34(6):699–710.PubMedCrossRef Joseph-Williams N, Newcombe R, Politi M, Durand MA, Sivell S, Stacey D, et al. Toward minimum standards for certifying patient decision aids: a modified Delphi consensus process. Medical Decision Making. 2014;34(6):699–710.PubMedCrossRef
25.
go back to reference Joseph-Williams N, Edwards A, Elwyn G. Power imbalance prevents shared decision making. BMJ (Clinical research ed). 2014;348:g3178. Joseph-Williams N, Edwards A, Elwyn G. Power imbalance prevents shared decision making. BMJ (Clinical research ed). 2014;348:g3178.
26.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
27.
go back to reference Dolan JG. Multi-criteria clinical decision support: a primer on the use of multiple criteria decision making methods to promote evidence-based, patient-centered healthcare. Patient. 2010;3(4):229–48.PubMedPubMedCentralCrossRef Dolan JG. Multi-criteria clinical decision support: a primer on the use of multiple criteria decision making methods to promote evidence-based, patient-centered healthcare. Patient. 2010;3(4):229–48.PubMedPubMedCentralCrossRef
28.
go back to reference French RS, Cowan FM, Wellings K, Dowie J. The development of a multi-criteria decision analysis aid to help with contraceptive choices: my contraception tool. J Fam Plann Reprod Health Care. 2014;40(2):96–101.PubMedCrossRef French RS, Cowan FM, Wellings K, Dowie J. The development of a multi-criteria decision analysis aid to help with contraceptive choices: my contraception tool. J Fam Plann Reprod Health Care. 2014;40(2):96–101.PubMedCrossRef
29.
go back to reference Kassan EC, Williams RM, Kelly SP, Barry SA, Penek S, Fishman MB, et al. Men's use of an internet-based decision aid for prostate cancer screening. J Health Commun. 2012;17(6):677–97.PubMedCrossRef Kassan EC, Williams RM, Kelly SP, Barry SA, Penek S, Fishman MB, et al. Men's use of an internet-based decision aid for prostate cancer screening. J Health Commun. 2012;17(6):677–97.PubMedCrossRef
30.
go back to reference Brazell HD, O'Sullivan DM, Forrest A, Greene JF. Effect of a decision aid on decision making for the treatment of pelvic organ prolapse. Female Pelvic Med Reconstr Surg. 2015;21(4):231–5.31.PubMedCrossRef Brazell HD, O'Sullivan DM, Forrest A, Greene JF. Effect of a decision aid on decision making for the treatment of pelvic organ prolapse. Female Pelvic Med Reconstr Surg. 2015;21(4):231–5.31.PubMedCrossRef
32.
go back to reference Holzblatt K, Beyer H. Contextual design : Design for Life. 2nd ed. Cambridge: 2017, 1998 Elsevier Inc; 2017. Holzblatt K, Beyer H. Contextual design : Design for Life. 2nd ed. Cambridge: 2017, 1998 Elsevier Inc; 2017.
33.
go back to reference Spradley JP. The ethnographic interview. Belmont: Wadsworth; 1979. Spradley JP. The ethnographic interview. Belmont: Wadsworth; 1979.
34.
go back to reference Bødker KKF, Simonsen J. Participatory IT design. Designing for business and workplace realities. Cambridge: MIT Press; 2004.CrossRef Bødker KKF, Simonsen J. Participatory IT design. Designing for business and workplace realities. Cambridge: MIT Press; 2004.CrossRef
35.
go back to reference Sanders EB-N, Brandt E, Binder T. A framework for organizing the tools and techniques of participatory design. In: Proceedings of the 11th biennial participatory design conference; 2010. p. 195–8.CrossRef Sanders EB-N, Brandt E, Binder T. A framework for organizing the tools and techniques of participatory design. In: Proceedings of the 11th biennial participatory design conference; 2010. p. 195–8.CrossRef
36.
go back to reference Simonsen J, Robertson T. Routledge international handbook of participatory design. New York: Routledge; 2013. Simonsen J, Robertson T. Routledge international handbook of participatory design. New York: Routledge; 2013.
37.
go back to reference Elwyn G, Edwards A, Wensing M, Hood K, Atwell C, Grol R. Shared decision making: developing the OPTION scale for measuring patient involvement. Qual Saf Health Care. 2003;12(2):93–9.PubMedPubMedCentralCrossRef Elwyn G, Edwards A, Wensing M, Hood K, Atwell C, Grol R. Shared decision making: developing the OPTION scale for measuring patient involvement. Qual Saf Health Care. 2003;12(2):93–9.PubMedPubMedCentralCrossRef
38.
go back to reference Barr PJ, O'Malley AJ, Tsulukidze M, Gionfriddo MR, Montori V, Elwyn G. The psychometric properties of observer OPTION (5), an observer measure of shared decision making. Patient Educ Couns. 2015;98(8):970–6.PubMedCrossRef Barr PJ, O'Malley AJ, Tsulukidze M, Gionfriddo MR, Montori V, Elwyn G. The psychometric properties of observer OPTION (5), an observer measure of shared decision making. Patient Educ Couns. 2015;98(8):970–6.PubMedCrossRef
39.
go back to reference Lowder JL, Ghetti C, Nikolajski C, Oliphant SS, Zyczynski HM. Body image perceptions in women with pelvic organ prolapse: a qualitative study. Am J Obstet Gynecol. 2011;204(5):441.e1–5.CrossRef Lowder JL, Ghetti C, Nikolajski C, Oliphant SS, Zyczynski HM. Body image perceptions in women with pelvic organ prolapse: a qualitative study. Am J Obstet Gynecol. 2011;204(5):441.e1–5.CrossRef
40.
go back to reference Sung VW, Rogers RG, Barber MD, Clark MA. Conceptual framework for patient-important treatment outcomes for pelvic organ prolapse. NeurourolUrodyn. 2014;33(4):414–9. Sung VW, Rogers RG, Barber MD, Clark MA. Conceptual framework for patient-important treatment outcomes for pelvic organ prolapse. NeurourolUrodyn. 2014;33(4):414–9.
42.
go back to reference Kvale S, Brinkmann S. Interview. Introduktion til et håndværk. Copenhagen: Hans Reitzels Forlag; 2009. Kvale S, Brinkmann S. Interview. Introduktion til et håndværk. Copenhagen: Hans Reitzels Forlag; 2009.
43.
go back to reference Hill T, Westbrook R. SWOT analysis: It's time for a product recall. Long Range Plann. 1997;30(1):46–52.CrossRef Hill T, Westbrook R. SWOT analysis: It's time for a product recall. Long Range Plann. 1997;30(1):46–52.CrossRef
44.
go back to reference Kujala S. User involvement: a review of the benefits and challenges. Behaviour Information Technol. 2003;22(1):1–16.CrossRef Kujala S. User involvement: a review of the benefits and challenges. Behaviour Information Technol. 2003;22(1):1–16.CrossRef
45.
go back to reference Kushniruk A, Nohr C. Participatory design, user involvement and health IT evaluation. Stud Health Technol Inform. 2016;222:139–51.PubMed Kushniruk A, Nohr C. Participatory design, user involvement and health IT evaluation. Stud Health Technol Inform. 2016;222:139–51.PubMed
46.
go back to reference Danbjørg DB, Wagner L, Clemensen J. Designing, developing, and testing an app for parents being discharged early postnatally. J Nurse Pract. 2014;10(10):794–802.CrossRef Danbjørg DB, Wagner L, Clemensen J. Designing, developing, and testing an app for parents being discharged early postnatally. J Nurse Pract. 2014;10(10):794–802.CrossRef
47.
go back to reference Shorten A, Fagerlin A, Illuzzi J, Kennedy HP, Lakehomer H, Pettker CM, et al. Developing an internet-based decision aid for women choosing between vaginal birth after cesarean and planned repeat cesarean. J Midwifery Womens Health. 2015;60(4):390–400.PubMedCrossRef Shorten A, Fagerlin A, Illuzzi J, Kennedy HP, Lakehomer H, Pettker CM, et al. Developing an internet-based decision aid for women choosing between vaginal birth after cesarean and planned repeat cesarean. J Midwifery Womens Health. 2015;60(4):390–400.PubMedCrossRef
48.
go back to reference Sundheds- og ældreministeriet, Kommuners Landsorganisation, Danske Regioner. Nationale mål for Sundhedsvæsenet. 2018. Sundheds- og ældreministeriet, Kommuners Landsorganisation, Danske Regioner. Nationale mål for Sundhedsvæsenet. 2018.
49.
go back to reference Sandvei M, Hørder M. Patienten som partner i dansk sundhedsforskning: Vidensdeling og kortlægning af patientinddragelse i forskning i Danmark. Syddansk universitet: Syddansk Universitet; 2018. Sandvei M, Hørder M. Patienten som partner i dansk sundhedsforskning: Vidensdeling og kortlægning af patientinddragelse i forskning i Danmark. Syddansk universitet: Syddansk Universitet; 2018.
50.
go back to reference Elwyn G, Kreuwel I, Durand MA, Sivell S, Joseph-Williams N, Evans R, et al. How to develop web-based decision support interventions for patients: a process map. Patient Educ Couns. 2011;82(2):260–5.PubMedCrossRef Elwyn G, Kreuwel I, Durand MA, Sivell S, Joseph-Williams N, Evans R, et al. How to develop web-based decision support interventions for patients: a process map. Patient Educ Couns. 2011;82(2):260–5.PubMedCrossRef
51.
go back to reference Gaver B, Dunne T, Pacenti E. Cultural probes interactions; 1999 January + February 1999. p. 21–9. Gaver B, Dunne T, Pacenti E. Cultural probes interactions; 1999 January + February 1999. p. 21–9.
52.
go back to reference Sanders EB-N, Stappers PJ. Probes, toolkits and prototypes: three approaches to making in codesigning. CoDesign: Int J CoCreation Design Arts. 2014;10(1):5–14.CrossRef Sanders EB-N, Stappers PJ. Probes, toolkits and prototypes: three approaches to making in codesigning. CoDesign: Int J CoCreation Design Arts. 2014;10(1):5–14.CrossRef
53.
go back to reference Gaver W, Boucher A, Pennington S, Walker B. Cultural probes and the value of uncertainty interactions; 2004 September + October 2004. p. 53–6. Gaver W, Boucher A, Pennington S, Walker B. Cultural probes and the value of uncertainty interactions; 2004 September + October 2004. p. 53–6.
54.
go back to reference Barber MD, Walters MD, Cundiff GW. Responsiveness of the pelvic floor distress inventory (PFDI) and pelvic floor impact questionnaire (PFIQ) in women undergoing vaginal surgery and pessary treatment for pelvic organ prolapse. Am J Obstet Gynecol. 2006;194(5):1492–8.PubMedCrossRef Barber MD, Walters MD, Cundiff GW. Responsiveness of the pelvic floor distress inventory (PFDI) and pelvic floor impact questionnaire (PFIQ) in women undergoing vaginal surgery and pessary treatment for pelvic organ prolapse. Am J Obstet Gynecol. 2006;194(5):1492–8.PubMedCrossRef
55.
go back to reference Due U, Brostrom S, Lose G. Validation of the pelvic floor distress Inventory-20 and the pelvic floor impact Questionnaire-7 in Danish women with pelvic organ prolapse. Acta Obstet Gynecol Scand. 2013;92(9):1041–8.PubMedCrossRef Due U, Brostrom S, Lose G. Validation of the pelvic floor distress Inventory-20 and the pelvic floor impact Questionnaire-7 in Danish women with pelvic organ prolapse. Acta Obstet Gynecol Scand. 2013;92(9):1041–8.PubMedCrossRef
56.
go back to reference Frank AW. The wounded storyteller. Body, Illness & Ethics. Second edition ed. United States of America: The University of Chicago; 2013. Frank AW. The wounded storyteller. Body, Illness & Ethics. Second edition ed. United States of America: The University of Chicago; 2013.
Metadata
Title
Pelvic organ prolapse and treatment decisions– developing an online preference-sensitive tool to support shared decisions
Authors
Mette Hulbaek
Eva Knutz
Niels Teglhus Ebbesen
Jette Primdahl
Jesper Bo Nielsen
Regner Birkelund
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2020
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-020-01264-1

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