Literature DB >> 30181844

The role of patient and healthcare professionals in the era of new hemophilia treatments in developed and developing countries.

Fadi Nossair1, Courtney D Thornburg2.   

Abstract

Medical decisions in hemophilia care are primarily related to the type of factor replacement and treatment regimen. With the growing number of treatment options for patients with hemophilia, decision making is more complex and requires careful consideration of benefits, risks, and patient goals. Shared decision making and decision-aid tools facilitate patient and healthcare provider communication. In this review, the overall role of shared decision making in medicine is outlined, with special emphasis on models for practical implementation. Examples of shared decision making in hemophilia are outlined, and application to new therapeutics is discussed through a case-based approach.

Entities:  

Keywords:  clotting factor; extended half-life; gene therapy; hemophilia; novel therapies; shared decision making

Year:  2018        PMID: 30181844      PMCID: PMC6116757          DOI: 10.1177/2040620718784830

Source DB:  PubMed          Journal:  Ther Adv Hematol        ISSN: 2040-6207


  52 in total

1.  Patient/caregiver perceived benefits and barriers to elective orthopedic surgery (EOS) in patients with congenital hemophilia with inhibitors.

Authors:  M Dekoven; T Wisniewski; A Petrilla; N Holot; W C Lee; D Cooper
Journal:  J Med Econ       Date:  2012-01-03       Impact factor: 2.448

2.  Patient and parent preferences for haemophilia A treatments.

Authors:  A F Mohamed; J D Epstein; J M Li-McLeod
Journal:  Haemophilia       Date:  2010-11-11       Impact factor: 4.287

3.  Gene therapy for hemophilia: addressing the coming challenges of affordability and accessibility.

Authors:  Mark W Skinner
Journal:  Mol Ther       Date:  2013-01       Impact factor: 11.454

4.  Extended half-life clotting factor concentrates: results from published clinical trials.

Authors:  G Young; J N Mahlangu
Journal:  Haemophilia       Date:  2016-07       Impact factor: 4.287

5.  Preferences and experiences of chronically ill and disabled patients regarding shared decision-making: does the type of care to be decided upon matter?

Authors:  Atie van den Brink-Muinen; Peter Spreeuwenberg; Mieke Rijken
Journal:  Patient Educ Couns       Date:  2010-09-03

6.  Provider-patient communication and metabolic control.

Authors:  R L Street; V K Piziak; W S Carpentier; J Herzog; J Hejl; G Skinner; L McLellan
Journal:  Diabetes Care       Date:  1993-05       Impact factor: 19.112

7.  Phase 3 study of recombinant factor VIII Fc fusion protein in severe hemophilia A.

Authors:  Johnny Mahlangu; Jerry S Powell; Margaret V Ragni; Pratima Chowdary; Neil C Josephson; Ingrid Pabinger; Hideji Hanabusa; Naresh Gupta; Roshni Kulkarni; Patrick Fogarty; David Perry; Amy Shapiro; K John Pasi; Shashikant Apte; Ivan Nestorov; Haiyan Jiang; Shuanglian Li; Srividya Neelakantan; Lynda M Cristiano; Jaya Goyal; Jurg M Sommer; Jennifer A Dumont; Nigel Dodd; Karen Nugent; Gloria Vigliani; Alvin Luk; Aoife Brennan; Glenn F Pierce
Journal:  Blood       Date:  2013-11-13       Impact factor: 22.113

8.  Transition considerations for extended half-life factor products.

Authors:  S E Croteau; E J Neufeld
Journal:  Haemophilia       Date:  2015-04-09       Impact factor: 4.287

9.  Understanding patient preferences and willingness to pay for hemophilia therapies.

Authors:  Shraddha S Chaugule; Joel W Hay; Guy Young
Journal:  Patient Prefer Adherence       Date:  2015-11-11       Impact factor: 2.711

10.  Information provision and attentive listening as determinants of patient perceptions of shared decision-making around chronic illnesses.

Authors:  Ana-Belén Del Río-Lanza; Leticia Suárez-Álvarez; Ana Suárez-Vázquez; Rodolfo Vázquez-Casielles
Journal:  Springerplus       Date:  2016-08-22
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  8 in total

1.  Comparative analysis of oral health and treatment necessities in hemophilia individuals of Davangere population - A case control study.

Authors:  Varsha Kanjani; Rajeshwari G Annigeri; Suresh Hanagavadi; M R Manjunath
Journal:  J Family Med Prim Care       Date:  2020-09-30

2.  Patient-relevant health outcomes for hemophilia care: Development of an international standard outcomes set.

Authors:  Erna C van Balen; Brian O'Mahony; Marjon H Cnossen; Gerard Dolan; Victor S Blanchette; Kathelijn Fischer; Deborah Gue; Jamie O'Hara; Alfonso Iorio; Shannon Jackson; Barbara A Konkle; Diane J Nugent; Donna Coffin; Mark W Skinner; Cees Smit; Alok Srivastava; Fred van Eenennaam; Johanna G van der Bom; Samantha C Gouw
Journal:  Res Pract Thromb Haemost       Date:  2021-03-06

3.  Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study.

Authors:  Erna C van Balen; Marjolein L Wesselo; Bridget L Baker; Marjan J Westerman; Michiel Coppens; Cees Smit; Mariëtte H E Driessens; Frank W G Leebeek; Johanna G van der Bom; Samantha C Gouw
Journal:  Patient       Date:  2020-04       Impact factor: 3.883

Review 4.  How to discuss gene therapy for haemophilia? A patient and physician perspective.

Authors:  Wolfgang Miesbach; Brian O'Mahony; Nigel S Key; Mike Makris
Journal:  Haemophilia       Date:  2019-05-21       Impact factor: 4.287

5.  Shared decision making: Does a physician's decision-making style affect patient participation in treatment choices for primary immunodeficiency?

Authors:  Christopher C Lamb; Yunmei Wang; Kalle Lyytinen
Journal:  J Eval Clin Pract       Date:  2019-05-22       Impact factor: 2.431

6.  Optimizing language for effective communication of gene therapy concepts with hemophilia patients: a qualitative study.

Authors:  Daniel P Hart; Brian R Branchford; Sarah Hendry; Robert Ledniczky; Robert F Sidonio; Claude Négrier; Michelle Kim; Michelle Rice; Matthew Minshall; Claire Arcé; Steve Prince; Maria Kelleher; Sharon Lee
Journal:  Orphanet J Rare Dis       Date:  2021-04-28       Impact factor: 4.123

7.  UK vs US physician decision-making in the treatment of haemophilia.

Authors:  Christopher C Lamb; Adrian Wolfberg; Kalle Lyytinen
Journal:  Haemophilia       Date:  2019-05-05       Impact factor: 4.287

8.  Hemophilia Patient Experience in a Physical Therapy-Guided Health Education Intervention: A Mixed-Method Design.

Authors:  Alicia López-Casaus; Carolina Jiménez-Sánchez; Paula Cordova-Alegre; Fani Alfaro-Gervon; Laura Esteban-Repiso; Raquel Lafuente-Ureta
Journal:  Healthcare (Basel)       Date:  2021-12-14
  8 in total

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