Huntington Disease Health Related Quality of Life, Function and Well Being : The Patient's Perspective
Pérez-Pérez, Jesús (Hospital de la Santa Creu i Sant Pau (Barcelona, Catalunya))
Garcia, Sofia (Roche Pharma (Madrid))
Valle, Tamara Fernández (Hospital Universitario de Cruces (Barakaldo, País Basc))
Painous, Cèlia (Hospital Clínic i Provincial de Barcelona)
Querol-Pascual, Maria Rosa (Hospital de Badajoz)
Ruiz, Pedro J. García (Universidad Autónoma de Madrid)
Bellosta Diago, Elena (Hospital Clínico Universitario "Lozano Blesa" de Zaragoza)
Cubo Delgado, Esther (Universidad de Burgos)
Pastor, Barbara Vives (Hospital Universitari Son Espases (Palma de Mallorca, Balears))
Villaplana, María Carmen Peiró (Hospital Universitari i Politècnic La Fe (València))
Santana, Idaira Martín (Hospital Universitario Insular de Gran Canaria)
Blázquez Estrada, Marta (Hospital Universitario Central de Asturias)
Garride, Matilde Calopa (Hospital Universitari de Bellvitge)
Mir, Pablo (Universidad de Sevilla)
Álvarez, Carmen (Roche Pharma (Madrid))
Maurino, Jorge (Roche Pharma (Madrid))
de Prado, Anna (Real World Evidence (Madrid))
López-Sendón Moreno, Jose Luis (Hospital Universitario Ramón y Cajal (Madrid))

Data:	2024
Resum:	Limited information is available on patients' experience living with Huntington's disease (HD). The primary objective of this study was to assess the health-related quality of life and well being of patients with HD. A non-interventional, cross-sectional study was conducted in 17 hospitals-based movement disorders units in Spain. Patients aged ≥ 18 years, genetically HD diagnosed [with a diagnostic confidence level score of 4, and an Independence Scale (IS) score ≥ 70] were included. The primary variables were the Huntington's Disease Health-related Quality of Life (HDQLIFE) scores and results of the Satisfaction with Life Scale (SWLS). Secondary outcomes include the Unified HD Rating Scale (UHDRS), Beck Hopelessness Scale (BHS), Stigma Scale for Chronic Illness (SSCI-8), Beck Depression Inventory-Fast Screen (BDI-FS) and Problem Behaviours Assessment for HD short Version (PBA-S). A total of 102 patients were included. The mean age (SD) was 53. 1 (12. 1) years and 56% were male. Most of the patients (99. 0%) showed motor symptoms (87. 3%), behavioural and psychiatric disturbances (59. 8%), or cognitive impairment (20. 6%). HDQLIFE domain score means (SD) includes concern with death and dying 45. 97 (9. 60) end-of-life planning 37. 91 (8. 84), and meaning and purpose 44. 74 (9. 05). SWLS score mean was 24. 25 (7. 33). Depressive symptoms were found in 37. 4% of patients and moderate-to-severe feelings of hopelessness in 32. 9%. The prevalence of stigma was 55. 9% (n = 57). HD impacted quality of life, with prevalent motor, psychiatric symptoms and cognitive impairment. Patient perspectives may provide complementary information to implement specific interventions. The online version contains supplementary material available at 10. 1007/s40120-024-00655-0.
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, sempre que no sigui amb finalitats comercials, i sempre que es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Matèria:	Huntington disease ; Health-related quality of life ; Patient-reported outcomes ; Satisfaction with Life ; Depression ; Stigma
Publicat a:	Neurology and Therapy, Vol. 14 (october 2024) , p. 99-115, ISSN 2193-6536

Article original: https://ddd.uab.cat/record/307658?ln=ca
Correction: https://ddd.uab.cat/record/320627
DOI: 10.1007/s40120-024-00655-0
PMID: 39370480

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