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- W3023822860 abstract "Background Health care is an important element of living with Huntington’s, and has a real impact on patients’ physical and mental health. Experiences of care are important to patients and their families and can also affect health-related quality of life. Aims The current study aims to provide an indication of how Huntington’s patients in the UK perceive the health care experiences they have encountered on their care journey. Methods Patient survey data from the UK Neurological Alliance was used to explore care experiences. This is a national survey made available to patients, and participation was voluntary and anonymous. Results The type of care patients with Huntington’s disease received in order of highest frequency reported was from neurology (35%), neuropsychiatry (27%), specialist nurse (26%), occupational therapy (15%), physiotherapy (12%), speech therapy (8%), self-management (8%) and neuropsychology (8%). At diagnosis, communication of their condition was felt to be mostly ‘appropriate’ (62%), and information received at this point was generally satisfactory (70%). However, after diagnosis, the information received was perceived to be generally satisfactory by fewer patients (58%). When reflecting on health care services received in HD, care targeted at the neurological condition was positive in 54% of cases, but less so for mental health (31%) and social care (31%). Conclusion Data from these self-selected patients suggest that areas of care that could be further improved are around mental health, social care and post-diagnosis information." @default.
- W3023822860 created "2020-05-13" @default.
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- W3023822860 date "2018-09-01" @default.
- W3023822860 modified "2023-09-27" @default.
- W3023822860 title "H03 What do huntington’s patients think of their health care?" @default.
- W3023822860 doi "https://doi.org/10.1136/jnnp-2018-ehdn.184" @default.
- W3023822860 hasPublicationYear "2018" @default.
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