Gene Therapy in Hemophilia: A Transformational Patient Experience.

clinician-patient relationship communication patient engagement patient perspectives/narratives patient satisfaction quality of life

Journal

Journal of patient experience
ISSN: 2374-3735
Titre abrégé: J Patient Exp
Pays: United States
ID NLM: 101688338

Informations de publication

Date de publication:
2023
Historique:
pubmed: 4 9 2023
medline: 4 9 2023
entrez: 4 9 2023
Statut: epublish

Résumé

Hemophilia is a bleeding disorder caused by a single absent/defective gene and characterized by a lack of functional clotting factors. People with hemophilia may experience joint damage, pain, and psychological impairments, all of which could contribute to reduced health-related quality of life (HRQoL). The current standard of care is clotting factor replacement, which is associated with regular infusions; therefore, alternative treatments such as gene therapy (GT) are in development. GT involves the delivery of a functional copy of the clotting factor

Identifiants

pubmed: 37663068
doi: 10.1177/23743735231193573
pii: 10.1177_23743735231193573
pmc: PMC10472832
doi:

Types de publication

Journal Article

Langues

eng

Pagination

23743735231193573

Informations de copyright

© The Author(s) 2023.

Auteurs

Enayet Rasul (E)

Patient author. Have either haemophilia A or B and have undergone gene therapy treatment.

Ryan Hallock (R)

Patient author. Have either haemophilia A or B and have undergone gene therapy treatment.

Magnus Hellmann (M)

Patient author. Have either haemophilia A or B and have undergone gene therapy treatment.

Jay Konduros (J)

Patient author. Have either haemophilia A or B and have undergone gene therapy treatment.

Luke Pembroke (L)

Patient author. Have either haemophilia A or B and have undergone gene therapy treatment.

Gregory LeCleir (G)

Bayer, New Jersey, USA.

Sylvia von Mackensen (S)

Department of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.

Classifications MeSH