F067 Remotely-delivered guided self-help for anxiety among Huntington’s disease gene expansion carriers (GUIDE-HD): preliminary results from a randomised controlled feasibility trial

<h3>Background</h3> For Huntington’s Disease (HD) gene expansion carriers, anxiety is a common experience and is associated with worsened HD symptoms, lower quality of life and increased suicidality. Despite anxiety being a clinical priority, no evidence-based accessible psychological intervention is currently available. <h3>Aim</h3> To adapt the well-evidenced methods of guided self-help for anxiety, to meet the specific experiences of HD gene expansion carriers and assess the feasibility of trialling this remotely-delivered intervention. <h3>Methods</h3> The GUIDE-HD intervention was developed to combine cognitive behavioural therapy (CBT) and acceptance and commitment therapy (ACT) in a 10-week programme of weekly 1:1 sessions and workbooks, with optional supplementary carer sessions. Through UK National Health Service clinics and the Huntington’s Disease Association, 25 participants were recruited (22 HD participants, and 3 carers). Following eligibility screening, HD participants were randomly allocated to the intervention group or treatment as usual, with follow-ups post intervention, then at 3 months and 6 months. <h3>Results</h3> Preliminary results from this ongoing trial include reaching 80% of the recruitment target (estimated 52% recruitment rate from those approached). The GUIDE-HD intervention group retention rate was 91% for the 10-week programme, and 100% of those who completed it rated it as mostly or extremely acceptable. <h3>Conclusion</h3> Preliminary results indicate that guided self-help for anxiety when adapted for HD may be a relevant and acceptable intervention. This has improved our understanding of recruitment issues for psychological intervention trials, the importance of meaningful public and patient involvement and the provision of remotely-delivered interventions, which will all help inform a future larger trial.

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Published
2024-09-01
DOI
https://doi.org/10.1136/jnnp-2024-ehdn.185
Primary Topic
Biomedical Ethics and Regulation
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article
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article

F067 Remotely-delivered guided self-help for anxiety among Huntington’s disease gene expansion carriers (GUIDE-HD): preliminary results from a randomised controlled feasibility trial

Zaynah Khan, Maria Dale, Hugh Rickards, Katie Melvin et al.
Biomedical Ethics and Regulation
article

F067 Remotely-delivered guided self-help for anxiety among Huntington’s disease gene expansion carriers (GUIDE-HD): preliminary results from a randomised controlled feasibility trial

Zaynah Khan, Maria Dale, Hugh Rickards, Katie Melvin, Robert D. Wells, Fiona Eccles, Jenny Johnson, Jane Simpson, Reza Kiani, Nicolò Zarotti, Katie Newcombe, Jordan Rainbird, Lee Bell-Jones
article en

Abstract

<h3>Background</h3> For Huntington’s Disease (HD) gene expansion carriers, anxiety is a common experience and is associated with worsened HD symptoms, lower quality of life and increased suicidality. Despite anxiety being a clinical priority, no evidence-based accessible psychological intervention is currently available. <h3>Aim</h3> To adapt the well-evidenced methods of guided self-help for anxiety, to meet the specific experiences of HD gene expansion carriers and assess the feasibility of trialling this remotely-delivered intervention. <h3>Methods</h3> The GUIDE-HD intervention was developed to combine cognitive behavioural therapy (CBT) and acceptance and commitment therapy (ACT) in a 10-week programme of weekly 1:1 sessions and workbooks, with optional supplementary carer sessions. Through UK National Health Service clinics and the Huntington’s Disease Association, 25 participants were recruited (22 HD participants, and 3 carers). Following eligibility screening, HD participants were randomly allocated to the intervention group or treatment as usual, with follow-ups post intervention, then at 3 months and 6 months. <h3>Results</h3> Preliminary results from this ongoing trial include reaching 80% of the recruitment target (estimated 52% recruitment rate from those approached). The GUIDE-HD intervention group retention rate was 91% for the 10-week programme, and 100% of those who completed it rated it as mostly or extremely acceptable. <h3>Conclusion</h3> Preliminary results indicate that guided self-help for anxiety when adapted for HD may be a relevant and acceptable intervention. This has improved our understanding of recruitment issues for psychological intervention trials, the importance of meaningful public and patient involvement and the provision of remotely-delivered interventions, which will all help inform a future larger trial.

Birmingham and Solihull Mental Health NHS Foundation Trust (GB), Leicestershire Partnership NHS Trust (GB), Lancaster University (GB)
Openalex Percentile: Top 80%
Biomedical Ethics and Regulation
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