The Lived Experiences of People with Progressive Supranuclear Palsy and Their Caregivers.
Neurol Ther
; 12(1): 229-247, 2023 Feb.
Article
en En
| MEDLINE
| ID: mdl-36447110
Progressive supranuclear palsy (PSP) is a rare brain disorder caused by damaged nerve cells. PSP is often misdiagnosed as Parkinson's disease. Sufferers typically have issues with walking, eye movement, mood and memory, all of which worsen over time, and they often become entirely dependent on caregivers. Sadly, there is no cure, but day-to-day living can be supported. In this study, the researchers wanted to understand the lived experience of patients and families. First, researchers collected information from published sources about what it is like to live with PSP. Then they spoke with PSP experts, key opinion leaders, patients, caregivers, patient organisations, neurologists and nurses in the UK, France, Italy, Germany, Spain, the USA and Japan. This revealed important learnings about the clinical and emotional journey in PSP. There is a need for patients, caregivers and healthcare professionals to have open dialogue and build trust. Moreover, a closer collaboration between patient organisations and healthcare professionals could lead to improved care. Caregivers emerged as invisible heroes, and PSP care must prioritise support for them, in addition to patients. This study provides invaluable insights into the lived experience of patients and caregivers, as well as recommendations for supporting their clinical and emotional journey.
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Tipo de estudio:
Guideline
/
Qualitative_research
Aspecto:
Patient_preference
Idioma:
En
Revista:
Neurol Ther
Año:
2023
Tipo del documento:
Article
País de afiliación:
Alemania
Pais de publicación:
Nueva Zelanda