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Topics {✒️}

gov/news-events/press-announcements/fda-approves-targeted-treatment-rare-duchenne-muscular-dystrophy-mutation-0 food gov/news-events/press-announcements/fda-grants-accelerated-approval targeted-treatment-rare-duchenne-muscular-dystrophy-mutation food org/pediatrics/article-pdf/142/supplement_2/s5/905113/peds_20180333c %20diagnosis%2c%20treatment%20and%20counseling cosyns electronic supplementary material query=duchenne+muscular+dystrophy geuens drug-duchenne-muscular-dystrophy food data availability eu/ctr-search/search classify sections liesbeth de waele abbreviations coreq net/docs/ejprd-cosyns %20neuromuscular%20reference%20centre%20is engagement funding duchenne muscular dystrophy open discussion e-mail addresses publicly enhances professional-patient relationships developing evidence-based tools additional information publisher caregiver-proxy viewpoints central multi-disciplinary health research supplementary questions related shared decision-making [internet] obtain open-ended responses research rosanne janssens pre-empting future discussions human rights potentially time-consuming nature state privacy rights rare diseases home providing evidence-based information evidence-based information tools pediatric shared decision-making pdf osorio received corticosteroid treatment facilitating patient-centered care rare disease caused chantal van audenhove van der weijden sam geuens implementing shared decision-making provide evidence-based information privacy choices/manage cookies targeted treatment bmc pediatrics european economic area

Questions {❓}

• Charles C, Gafnv A, Whelan T, SHARED DECISION-MAKING IN, THE MEDICAL ENCOUNTER: WHAT DOES IT MEAN?
• For which decisions is Shared decision making considered appropriate?
• How are decisions made in cancer care?
• Physician as partner or salesman?
• What information do patients want about their medicines?
• Where is the evidence?
• Eu/ctr-search/search?

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WebPage:
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         headline:Caregivers and multidisciplinary team members’ perspectives on shared decision making in Duchenne muscular dystrophy: A qualitative study
         description:As new therapies for Duchenne muscular dystrophy (DMD) are entering the market, shared decision making (SDM) will become increasingly important. Therefore, this study aimed to understand (1) Belgian stakeholders’ knowledge and perceptions of SDM in DMD treatment decision making, (2) the current state of SDM implementation in DMD in Belgium, examining the role of all involved parties, and (3) the barriers and facilitators for SDM in DMD in the Belgian context. In this qualitative study, semi-structured interviews with the multidisciplinary team (MDT) of individuals with DMD (n = 18) and caregivers thereof (n = 11) were conducted in Belgium. Qualitative data was analyzed thematically using the framework method. Most caregivers were unfamiliar with the term SDM, while MDT members were aware of it but struggled to define it consistent with existing literature. Despite acknowledging some drawbacks, participants valued SDM as an important process in DMD care, noting its presence in current practice. However, both MDT members and caregivers sometimes questioned the necessity of SDM due to limited treatment options available. Consequently, decision making predominantly relied on (child) neurologists sharing information and seeking consent from caregivers and individuals with DMD for a proposed treatment. Participants highlighted the important role of the MDT, with each professional contributing its unique expertise to SDM. To reduce existing barriers and enhance the SDM process, participants called for clear and transparent information regarding different treatment options, including clinical trials, and detailed information on how treatments might affect patients’ daily life. This study identified an increased need for easily understandable information, particularly regarding DMD care in general, but also about clinical trials covering new and emerging therapies. Developing specific evidence-based tools could support stakeholders’ understanding of this information, thereby enhancing implementation of the SDM process in DMD care. Further, as the treatment landscape of DMD evolves, it will become increasingly important for patients to be supported by an MDT, as they can provide information on clinical trials (e.g., study coordinators), emotional support (e.g., psychologists, nurses), and decisional guidance (e.g., neurologist).
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      headline:Caregivers and multidisciplinary team members’ perspectives on shared decision making in Duchenne muscular dystrophy: A qualitative study
      description:As new therapies for Duchenne muscular dystrophy (DMD) are entering the market, shared decision making (SDM) will become increasingly important. Therefore, this study aimed to understand (1) Belgian stakeholders’ knowledge and perceptions of SDM in DMD treatment decision making, (2) the current state of SDM implementation in DMD in Belgium, examining the role of all involved parties, and (3) the barriers and facilitators for SDM in DMD in the Belgian context. In this qualitative study, semi-structured interviews with the multidisciplinary team (MDT) of individuals with DMD (n = 18) and caregivers thereof (n = 11) were conducted in Belgium. Qualitative data was analyzed thematically using the framework method. Most caregivers were unfamiliar with the term SDM, while MDT members were aware of it but struggled to define it consistent with existing literature. Despite acknowledging some drawbacks, participants valued SDM as an important process in DMD care, noting its presence in current practice. However, both MDT members and caregivers sometimes questioned the necessity of SDM due to limited treatment options available. Consequently, decision making predominantly relied on (child) neurologists sharing information and seeking consent from caregivers and individuals with DMD for a proposed treatment. Participants highlighted the important role of the MDT, with each professional contributing its unique expertise to SDM. To reduce existing barriers and enhance the SDM process, participants called for clear and transparent information regarding different treatment options, including clinical trials, and detailed information on how treatments might affect patients’ daily life. This study identified an increased need for easily understandable information, particularly regarding DMD care in general, but also about clinical trials covering new and emerging therapies. Developing specific evidence-based tools could support stakeholders’ understanding of this information, thereby enhancing implementation of the SDM process in DMD care. Further, as the treatment landscape of DMD evolves, it will become increasingly important for patients to be supported by an MDT, as they can provide information on clinical trials (e.g., study coordinators), emotional support (e.g., psychologists, nurses), and decisional guidance (e.g., neurologist).
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      keywords:
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         Patient decision aids
         Informational needs
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               type:PostalAddress
            type:Organization
      name:Isabelle Huys
      url:http://orcid.org/0000-0002-4738-8298
      affiliation:
            name:KU Leuven
            address:
               name:Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium
               type:PostalAddress
            type:Organization
      email:[email protected]
PostalAddress:
      name:Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium
      name:Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium
      name:Healthcare Management Centre, Vlerick Business School, Ghent, Belgium
      name:Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium
      name:Pfizer NV, Elsene, Belgium
      name:Department of Child Neurology, University Hospitals Leuven, Leuven, Belgium
      name:Department of Development and Regeneration, KU Leuven, Leuven, Belgium
      name:Department of Child Neurology, University Hospitals Leuven, Leuven, Belgium
      name:Department of Development and Regeneration, KU Leuven, Leuven, Belgium
      name:Duchenne Parent Project Belgium, Haacht, Belgium
      name:Duchenne Parent Project Belgium, Haacht, Belgium
      name:Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium
      name:Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
      name:Pfizer NV, Elsene, Belgium
      name:Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium
      name:Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium

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