Development of the World Federation of Hemophilia Shared Decision‐Making Tool
Introduction The use of shared decision‐making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in...
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| Published in: | Haemophilia : the official journal of the World Federation of Hemophilia Vol. 30; no. 6; pp. 1298 - 1308 |
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| Main Authors: | , , , , , , , , |
| Format: | Journal Article |
| Language: | English |
| Published: |
England
Wiley Subscription Services, Inc
01.11.2024
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| Subjects: | |
| ISSN: | 1351-8216, 1365-2516, 1365-2516 |
| Online Access: | Get full text |
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| Abstract | Introduction
The use of shared decision‐making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in other chronic conditions and can be an effective form of education for patients and clinicians.
Aim
The World Federation of Hemophilia (WFH) partnered with people with haemophilia (PWH), patient advocacy groups, and healthcare practitioners to form an expert working group to develop an educational tool for PWH and their caregivers. The primary objectives included educating PWH on the available prophylactic treatments and facilitating discussion between PWH and their healthcare team.
Methods
The tool was proposed and developed by the expert working group, workshopped at conference round tables, and evaluated in two focus groups.
Results
The interactive WFH SDM Tool guides users through the SDM treatment journey and provides an opportunity for reflection on current disease impact and treatment preferences, educational fact sheets and videos, and a comparison between treatment classes. Two forms of the SDM Tool are available: an online platform with a summary page that may be printed and shared and a printable workbook. All evidence in the tool is based on the prescribing information or phase III clinical trial publications. The Tool will be updated twice each year.
Conclusion
The WFH SDM Tool is the first available resource that translates published guidance on SDM in haemophilia into a practical, user‐friendly tool aimed at facilitating patient‐centred treatment decisions. |
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| AbstractList | Introduction
The use of shared decision‐making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in other chronic conditions and can be an effective form of education for patients and clinicians.
Aim
The World Federation of Hemophilia (WFH) partnered with people with haemophilia (PWH), patient advocacy groups, and healthcare practitioners to form an expert working group to develop an educational tool for PWH and their caregivers. The primary objectives included educating PWH on the available prophylactic treatments and facilitating discussion between PWH and their healthcare team.
Methods
The tool was proposed and developed by the expert working group, workshopped at conference round tables, and evaluated in two focus groups.
Results
The interactive WFH SDM Tool guides users through the SDM treatment journey and provides an opportunity for reflection on current disease impact and treatment preferences, educational fact sheets and videos, and a comparison between treatment classes. Two forms of the SDM Tool are available: an online platform with a summary page that may be printed and shared and a printable workbook. All evidence in the tool is based on the prescribing information or phase III clinical trial publications. The Tool will be updated twice each year.
Conclusion
The WFH SDM Tool is the first available resource that translates published guidance on SDM in haemophilia into a practical, user‐friendly tool aimed at facilitating patient‐centred treatment decisions. The use of shared decision-making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in other chronic conditions and can be an effective form of education for patients and clinicians. The World Federation of Hemophilia (WFH) partnered with people with haemophilia (PWH), patient advocacy groups, and healthcare practitioners to form an expert working group to develop an educational tool for PWH and their caregivers. The primary objectives included educating PWH on the available prophylactic treatments and facilitating discussion between PWH and their healthcare team. The tool was proposed and developed by the expert working group, workshopped at conference round tables, and evaluated in two focus groups. The interactive WFH SDM Tool guides users through the SDM treatment journey and provides an opportunity for reflection on current disease impact and treatment preferences, educational fact sheets and videos, and a comparison between treatment classes. Two forms of the SDM Tool are available: an online platform with a summary page that may be printed and shared and a printable workbook. All evidence in the tool is based on the prescribing information or phase III clinical trial publications. The Tool will be updated twice each year. The WFH SDM Tool is the first available resource that translates published guidance on SDM in haemophilia into a practical, user-friendly tool aimed at facilitating patient-centred treatment decisions. The use of shared decision-making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in other chronic conditions and can be an effective form of education for patients and clinicians.INTRODUCTIONThe use of shared decision-making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in other chronic conditions and can be an effective form of education for patients and clinicians.The World Federation of Hemophilia (WFH) partnered with people with haemophilia (PWH), patient advocacy groups, and healthcare practitioners to form an expert working group to develop an educational tool for PWH and their caregivers. The primary objectives included educating PWH on the available prophylactic treatments and facilitating discussion between PWH and their healthcare team.AIMThe World Federation of Hemophilia (WFH) partnered with people with haemophilia (PWH), patient advocacy groups, and healthcare practitioners to form an expert working group to develop an educational tool for PWH and their caregivers. The primary objectives included educating PWH on the available prophylactic treatments and facilitating discussion between PWH and their healthcare team.The tool was proposed and developed by the expert working group, workshopped at conference round tables, and evaluated in two focus groups.METHODSThe tool was proposed and developed by the expert working group, workshopped at conference round tables, and evaluated in two focus groups.The interactive WFH SDM Tool guides users through the SDM treatment journey and provides an opportunity for reflection on current disease impact and treatment preferences, educational fact sheets and videos, and a comparison between treatment classes. Two forms of the SDM Tool are available: an online platform with a summary page that may be printed and shared and a printable workbook. All evidence in the tool is based on the prescribing information or phase III clinical trial publications. The Tool will be updated twice each year.RESULTSThe interactive WFH SDM Tool guides users through the SDM treatment journey and provides an opportunity for reflection on current disease impact and treatment preferences, educational fact sheets and videos, and a comparison between treatment classes. Two forms of the SDM Tool are available: an online platform with a summary page that may be printed and shared and a printable workbook. All evidence in the tool is based on the prescribing information or phase III clinical trial publications. The Tool will be updated twice each year.The WFH SDM Tool is the first available resource that translates published guidance on SDM in haemophilia into a practical, user-friendly tool aimed at facilitating patient-centred treatment decisions.CONCLUSIONThe WFH SDM Tool is the first available resource that translates published guidance on SDM in haemophilia into a practical, user-friendly tool aimed at facilitating patient-centred treatment decisions. IntroductionThe use of shared decision‐making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in other chronic conditions and can be an effective form of education for patients and clinicians.AimThe World Federation of Hemophilia (WFH) partnered with people with haemophilia (PWH), patient advocacy groups, and healthcare practitioners to form an expert working group to develop an educational tool for PWH and their caregivers. The primary objectives included educating PWH on the available prophylactic treatments and facilitating discussion between PWH and their healthcare team.MethodsThe tool was proposed and developed by the expert working group, workshopped at conference round tables, and evaluated in two focus groups.ResultsThe interactive WFH SDM Tool guides users through the SDM treatment journey and provides an opportunity for reflection on current disease impact and treatment preferences, educational fact sheets and videos, and a comparison between treatment classes. Two forms of the SDM Tool are available: an online platform with a summary page that may be printed and shared and a printable workbook. All evidence in the tool is based on the prescribing information or phase III clinical trial publications. The Tool will be updated twice each year.ConclusionThe WFH SDM Tool is the first available resource that translates published guidance on SDM in haemophilia into a practical, user‐friendly tool aimed at facilitating patient‐centred treatment decisions. |
| Author | Pierce, Glenn F. Naccache, Mayss Skinner, Mark W. Coffin, Donna Sannié, Thomas Chadwick, Julia Thornburg, Courtney D. Hayes, Brendan K. Kaeser, Gwendolyn E. |
| Author_xml | – sequence: 1 givenname: Donna orcidid: 0000-0001-8372-4474 surname: Coffin fullname: Coffin, Donna email: dcoffin@wfh.org organization: The World Federation of Hemophilia – sequence: 2 givenname: Mark W. orcidid: 0000-0002-0934-0680 surname: Skinner fullname: Skinner, Mark W. organization: McMaster University – sequence: 3 givenname: Courtney D. surname: Thornburg fullname: Thornburg, Courtney D. organization: Rady Children's Hospital – sequence: 4 givenname: Brendan K. surname: Hayes fullname: Hayes, Brendan K. organization: The National Bleeding Disorders Foundation – sequence: 5 givenname: Thomas orcidid: 0000-0002-9220-1840 surname: Sannié fullname: Sannié, Thomas organization: Association Française des Hémophiles – sequence: 6 givenname: Gwendolyn E. surname: Kaeser fullname: Kaeser, Gwendolyn E. organization: Gwen Kaeser Medical Writing, LLC – sequence: 7 givenname: Julia surname: Chadwick fullname: Chadwick, Julia organization: The World Federation of Hemophilia – sequence: 8 givenname: Mayss surname: Naccache fullname: Naccache, Mayss organization: The World Federation of Hemophilia – sequence: 9 givenname: Glenn F. orcidid: 0000-0002-3310-328X surname: Pierce fullname: Pierce, Glenn F. organization: The World Federation of Hemophilia |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/39368065$$D View this record in MEDLINE/PubMed |
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The use of shared decision‐making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape... The use of shared decision-making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of... IntroductionThe use of shared decision‐making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape... |
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| SubjectTerms | bleeding disorders Decision making Decision Making, Shared haemophilia Health care Hemophilia Hemophilia A - therapy Humans management guidelines Patients SDM tool Shared decision making treatment decisions Working groups |
| Title | Development of the World Federation of Hemophilia Shared Decision‐Making Tool |
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