MENTAL HEALTH, SUICIDALITY, AND UNDERRECOGNIZED PSYCHOLOGICAL BURDEN IN PREMANIFEST HUNTINGTON’S DISEASE: INSIGHTS FROM THE PRE-HDBOI STUDY
Author(s)
Vijay Bonthapally, PhD1, Idaira Rodriguez Santana, PhD2, Claudia Mighiu, MSc2, Astri Arnesen, MS3, Hemant Vyas, PhD4, Steven Lindquist, .1, Bogdan Balas, MD5;
1uniQure, Lexington, MA, USA, 2Prime HCD, Knutsford, United Kingdom, 3European Huntington Association, Søgne, Norway, 4Consultant for uniQure, Lexington, MA, USA, 5uniQure Switzerland GmbH, Basel, Switzerland
1uniQure, Lexington, MA, USA, 2Prime HCD, Knutsford, United Kingdom, 3European Huntington Association, Søgne, Norway, 4Consultant for uniQure, Lexington, MA, USA, 5uniQure Switzerland GmbH, Basel, Switzerland
OBJECTIVES: This study aimed to characterize the prevalence and severity of mental-health symptoms, the occurrence of suicidal ideation, and healthcare professionals’ (HCP) perspectives on symptom recognition and unmet psychological needs in people with premanifest Huntington’s Disease (PwPHD).
METHODS: Data were obtained from the Pre-HDBOI study, a multinational, cross-sectional survey conducted across the US and EU-5. Two PwPHD subgroups (genetically-confirmed premanifest HD and HD at-risk) completed the study questionnaire assessing anxiety, depression, and self-harm thoughts (among other variables) over the preceding 12 months. Additionally, HD specialists completed an aggregate-level HCP survey evaluating early symptom recognition and unmet psychological support needs (among other variables) in perimanifest/prodromal patients and gene-expansion carriers under their care. All analyses were descriptive.
RESULTS: Among 153 PwPHD, 37% reported ≥1 HD-related symptom within the prior year. Anxiety and depression were the most frequently reported behavioral symptoms. Suicidal ideation was reported by 45% of participants, ranging from occasional thoughts of self-harm to recurrent episodes, with higher prevalence in the premanifest subgroup compared with those at-risk. A smaller subgroup reported prior suicide attempts. HCPs reported that 50%-60% of perimanifest/prodromal patients and ~70% of gene-expansion carriers either do not recognize early symptoms, or do not seek appropriate care for their symptoms. Key unmet needs identified by HCPs included insufficient access to psychological support and limited specialist resources for individuals in early disease stages.
CONCLUSIONS: PwPHD experience a substantial and underrecognized mental-health burden—including high rates of anxiety, depression, and suicidal ideation—well before motor diagnosis. Early psychological and behavioral impairment are underdiagnosed and undertreated, highlighting the need for systematic mental-health screening, timely psychosocial intervention, and incorporation of psychiatric endpoints into early-stage HD research and care pathways. Integrating mental-health screening into early HD evaluation may improve early detection and treatment of psychiatric and cognitive symptoms, potentially enhancing safety and quality of life for PwPHD.
METHODS: Data were obtained from the Pre-HDBOI study, a multinational, cross-sectional survey conducted across the US and EU-5. Two PwPHD subgroups (genetically-confirmed premanifest HD and HD at-risk) completed the study questionnaire assessing anxiety, depression, and self-harm thoughts (among other variables) over the preceding 12 months. Additionally, HD specialists completed an aggregate-level HCP survey evaluating early symptom recognition and unmet psychological support needs (among other variables) in perimanifest/prodromal patients and gene-expansion carriers under their care. All analyses were descriptive.
RESULTS: Among 153 PwPHD, 37% reported ≥1 HD-related symptom within the prior year. Anxiety and depression were the most frequently reported behavioral symptoms. Suicidal ideation was reported by 45% of participants, ranging from occasional thoughts of self-harm to recurrent episodes, with higher prevalence in the premanifest subgroup compared with those at-risk. A smaller subgroup reported prior suicide attempts. HCPs reported that 50%-60% of perimanifest/prodromal patients and ~70% of gene-expansion carriers either do not recognize early symptoms, or do not seek appropriate care for their symptoms. Key unmet needs identified by HCPs included insufficient access to psychological support and limited specialist resources for individuals in early disease stages.
CONCLUSIONS: PwPHD experience a substantial and underrecognized mental-health burden—including high rates of anxiety, depression, and suicidal ideation—well before motor diagnosis. Early psychological and behavioral impairment are underdiagnosed and undertreated, highlighting the need for systematic mental-health screening, timely psychosocial intervention, and incorporation of psychiatric endpoints into early-stage HD research and care pathways. Integrating mental-health screening into early HD evaluation may improve early detection and treatment of psychiatric and cognitive symptoms, potentially enhancing safety and quality of life for PwPHD.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR53
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Neurological Disorders