K14 Understandings of psychological difficulties in people with huntington’s disease and their expectations of psychological therapy

2016 ◽  
Vol 87 (Suppl 1) ◽  
pp. A84.1-A84
Author(s):  
Jane Simpson ◽  
Rachael Theed ◽  
Fiona Eccles
2020 ◽  
Vol 9 (3) ◽  
pp. 231-243
Author(s):  
Nicolò Zarotti ◽  
Maria Dale ◽  
Fiona Eccles ◽  
Jane Simpson

Background: Although Huntington’s disease (HD) can cause a wide range of psychological difficulties, no review has ever been carried out on the range of psychological interventions adopted with this population. Objective: To scope the literature on psychological interventions for psychological difficulties in people affected by HD. Methods: A systematic scoping review was performed across MEDLINE, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library up to 1 March 2020. Results: From an initial return of 1579 citations, a total of nine papers were considered eligible for review. These included a qualitative investigation, three case studies, two case series, two uncontrolled pretest-posttest designs, and only one randomised control trial (RCT). Despite the wide range of psychological difficulties which can be experienced by people affected by the HD gene expansion, the adopted interventions only accounted for five main psychological outcomes (anxiety, apathy, depression, irritability, and coping). Further discussion and suggestions for future research are provided for each outcome. Conclusion: The current literature on psychological interventions in people affected by HD is extremely limited both in terms of methods and addressed clinical outcomes. Consequently, no conclusions can be offered yet as to which psychological therapy may help this population. As further more comprehensive research is urgently needed for this group, the ultimate aim of the present review is to act as a call to arms for HD researchers worldwide to help shed light on the most effective way to translate psychological theory into practice for the benefit of people affected by HD.


2022 ◽  
Vol 12 (1) ◽  
pp. 64
Author(s):  
Nicolò Zarotti ◽  
Maria Dale ◽  
Fiona J. R. Eccles ◽  
Jane Simpson

Huntington’s disease (HD) is a rare and complex condition where affected individuals, family members, caregivers, and clinicians face a number of both long-term and fluctuating challenges. The predominant biomedical framework adopted in HD to date has traditionally viewed it as a brain disorder first and foremost. As a consequence, one of the most challenging aspects of the condition—psychological difficulties and their care—is often not given the emphasis it deserves in everyday clinical practice. Here, we propose a manifesto outlining five points to address the quality, effectiveness, availability, and accessibility of psychological care in HD. These include (1) Listening to People with HD, (2) Reformulating Difficulties Psychologically, (3) Exploring New Interventions, (4) Increasing Psychological Provision, and (5) Learning from Other Conditions. As the search for a cure continues, we hope that this manifesto will create a new impetus towards refining the current approach to psychological difficulties in HD and ultimately improve the quality of life of the tens of thousands of families affected by HD worldwide.


2008 ◽  
Vol 35 (S 01) ◽  
Author(s):  
M Mühlau ◽  
A Wohlschläger ◽  
C Gaser ◽  
M Valet ◽  
S Nunnemann ◽  
...  

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