A study of what helps people with Huntington’s disease live with their condition

Smith, Steve (2015) A study of what helps people with Huntington’s disease live with their condition. Masters thesis, University of East Anglia.

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Huntington’s disease (HD) is a life-limiting neurodegenerative condition in which the onset of symptoms, generally in midlife, is characterised by cognitive decline, psychological problems and movement disorder. HD is inherited as a dominant genetic trait. Co-morbities are prevalent and include psychiatric effects such as depression, anxiety and psychosis. Death from suicide among people with HD is reported to occur four to five times more frequently than among the general population. The only treatment for HD supported by well established evidence for effectiveness is tetrabenazine for reducing chorea and one of its side effects is depression.

To identify and prioritise “what helps people with Huntington’s disease live with their condition” from the perspectives of people with Huntington’s disease, their carers, and healthcare professionals who treat them

People with HD, family caregivers and health professionals generated 94 statements in answer to the question: ‘what helps people with HD live with their condition?’ The participants were based in community and institutional contexts. They prioritised the statements by organising them into five levels of importance, least to most important. Finally the participants arranged the statements into groups or ‘clusters’ to indicate which statements seemed subjectively to each participant to ‘belong’ together. Specialised ‘concept mapping’ software (Ariadne ®) was used to graphically depict the consensus among participants of how the statements were clustered and prioritised.

Expert assessment and treatment for co-morbid mental health problems were the highest priority for all participants. Flexibility in the provision of care and timeliness of help provided through integrated interdisciplinary teamworking with specialist HD expertise were also high priorities. People with HD prioritised being trusted and supported to maintain independence. They placed greater value on medical treatments than caregivers or professionals, who were more concerned with care and planning for future needs in more advanced stages of the disease. Overall participants were more concerned with lessening the impact of symptoms on living with HD than with measurably reducing specific symptoms such as chorea.

Healthcare professionals can help people with HD live with their condition by being more proactive in identifying and treating mental health problems, which is at present an important unmet need.

Item Type: Thesis (Masters)
Faculty \ School: Faculty of Medicine and Health Sciences > School of Nursing and Midwifery (former - to 2011)
Depositing User: Users 9280 not found.
Date Deposited: 29 Oct 2019 10:34
Last Modified: 29 Oct 2019 10:34
URI: https://ueaeprints.uea.ac.uk/id/eprint/72811

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