The sparse evidence-base for self-injurious behavior in Huntington’s disease: A call to action

Abstract

Suicidality is generally recognized in Huntington's populations, however self-harm remains largely unexplored. Ambiguity in language, inconsistency in classifications and definitions, and conceptual challenges from conflating inferences of intent have been highlighted across the literature. However, the broad descriptor ‘self-injurious behavior’ (SIB) has been used to incorporate self-destructive behaviors and acts of deliberate self-harm with or without suicide intent, while excluding suicide.¹ The distinct neuropsychiatric and motor characteristics of Huntington's result in SIB manifestations unique in form and function. Yet, no review of existing literature has been conducted for more nuanced understanding to inform clinical assessments, risk frameworks, intervention strategies, or future research directions. We wanted to map the existing Huntington's SIB literature, however, a narrow criterion for studies identifying SIB as a primary outcome yielded only one study. We therefore broadened our search to incorporate studies reporting SIB as a secondary finding, incidental observation, or within a measure. We searched Ovid, EBSCO, PubMed, ProQuest databases (04/04/2025 - 13/05/2025) and reference lists of included studies, using general SIB and self-harm terms to capture a wide array of studies without risking over-specification due to terminological differences. Suicidal ideation and attempt terms were included as constructs frequently conflate or overlap with SIB, particularly when reported as part of composite psychiatric outcomes. This allowed later disaggregation of findings to distinguish suicidal and non-suicidal behaviors, while ensuring comprehensive coverage (Supplemental 1).

We identified 14 studies (Table 1, Supplemental 2). Huntington's SIB references appeared sporadically, often folded into broader discussions and rarely defined or independently measured – most were either case study secondary findings or observations^2–7 or incidentally noted as secondary mentions across studies with broader psychiatric, behavior, or neurological symptomology focus.^8–14 The included studies largely lacked data on intent, and only one study explicitly quantified SIB (specifically referring to non-suicidal self-injury, NSSI) – a 1.9 percent lifetime prevalence in gene expansion carriers.¹⁵ Latent profile analysis of Enroll-HD data found ‘self-harm’ heightened (not statistically significant) compared to controls,⁸ however a cross-sectional study of Huntington's nursing home residents indicated low incidence of SIB.⁹ No significant differences in NSSI were found between pre-manifest and manifest Huntington's, or between disease stages.¹⁵ Reported SIB included head-banging, hair pulling, overdose, solvent or razor blade ingestion, driving into a tree, jumping from a window, hanging, arson, neglect, and ‘risky’ decision-making.^2–5^,7,12

Table 1.

Studies of self-injurious behavior (SIB) in huntington's disease.

Author, year, country	Title	Sample size	Inclusion of control / non-carrier group	Disease stage reported	Aims	Study relevance for SIB	Assessment tools reported (*validated for HD)	SIB findings
Achenbach et al. (2020), Germany	Clinical manifestation of Juvenile and Pediatric Huntington's disease Patients: A retrospective case series.	Individuals were identified with an early onset of HD when younger than 21 (n = 32).	No	No	To describe this rare group of patients with Juvenile-onset HD, with regard to socio-medical aspects and individual or common treatment strategies.	Case series with description of SIB.	No	Focused specifically on socio-medical aspects and individual or common treatment strategies. Of 32 juvenile and pediatric HD patients, 31.2 percent (pediatric group) and 33.3 percent (juvenile group) exhibited suicidal ideation and suicide attempts. Reported behaviors included solvent ingestion, swallowing razor blades, and jumping from a fifth-floor window. One case (a 22-year-old) reported suicidal ideation (driving against a tree), self-harming behavior and sleep disorder. Mirtazapine, tiapride improved situation greatly. Increasing aggressive behavior led to trials with various medication including citalopram, valproate, risperidone, arcoxia, memantine, zopiclone, pipamperone, elontril, and tavor.
Anderson et al. (2018), USA	Clinical management of neuropsychiatric symptoms of Huntington's: Expert-based consensus guidelines on agitation, anxiety, apathy, psychosis, and sleep disorders.	International committee of multidisciplinary experts (n = 11); International HD experts (n = 84, neurologists and psychiatrists).	No	No	To develop expert-based recommendations regarding the management of agitation, anxiety, apathy, psychosis, and sleep disorders.	Empirical study with secondary mention of SIB: Delphi study.	No	An international committee of multidisciplinary experts proposed a series of statements regarding the description and management of agitation, anxiety, apathy, psychosis, and symptoms of sleep disorders. The statement assessment and validation were then performed using a web-based survey tool by international HD experts indicating their level of agreement. Clinical guidelines for agitation in HD: “Threat to self” included as a clinical indicator within this domain of HD. Also, “for chronic agitation” that causes ongoing distress or a continuing risk of harm to self or others, medication options included either an antipsychotic or a mood-stabilizing antiepileptic drug.
Bilal et al. (2022), Australia	The lived experiences of depression in Huntington's disease: A qualitative study.	Pre-manifest HD (n = 11); Manifest HD (n = 6).	No	No	To investigate the lived experiences of depression in people with the CAG expansion for HD.	Empirical study with secondary mention of SIB: Qualitative.	HADS*	Four key themes emerged related to the temporal characteristics of depression in HD, the qualitative changes associated with depression, psychosocial stressors perceived to contribute to depression, and the perception of depression as an endogenous feature of HD. While this study did not directly focus on SIB, various accounts from participants described “emotional pain”, “acting out”, and expressions of frustration that occasionally resulted in harm to self or others. One participant (Paul) reported that “there was no sort of self-harm or anything like that in it. It was just trying to deal with the thoughts…that I'm going to leave my girls (children) behind and not be with them and not see them grow up.” Several participants also reported engaging in self-harm and attempting suicide when their depressive symptoms were more severe. These behaviors were mainly interpreted through the lens of cognitive decline and psychiatric comorbidity.
Chu et al. (2019), United Kingdom	Huntington's disease: A forensic risk factor in women.	Female HD gene expansion carriers with forensic histories (n = 3)	No	No	To highlight the need for more awareness of the increased forensic risk in women with HD.	Case series with description of SIB.	No	This study described three women exhibiting high-risk, impulsive, and emotionally reactive behaviors including arson, aggression, and disinhibition. Two cases highlighted significant risk to self, including suicidal ideation and threats, multiple suicide attempts, and repeated self-harm. Case A had been the primary carer for her mother, who had HD. She later developed depression and anxiety at age 27, and at 43, a positive genetic test for HD triggered the first of many suicide attempts, suicide threats, and episodes of self-harm. Eventually, she was arrested on suspicion of arson after setting her living room on fire. On admission, she stated she would rather die than live with the disease and was placed under close supervision. Over the following two years, she experienced increasing anger and frustration, which she attributed to worsening mobility and frequent falls. Cognitive decline exacerbated impulsive risk behaviors, often necessitating seclusion. Case C, aged 42, was admitted to hospital after being found by police walking in traffic with suicidal intent. She had a history of childhood sexual abuse by her brother and described “never feeling good enough,” despite completing a university education. Her psychiatric history included alcohol dependency, which contributed to social decline and eventual homelessness. These difficulties were compounded by distress over a positive HD gene test. On admission, she appeared disheveled, irritable, and suspicious, with choreiform movements. She reported low self-esteem, guilt, and suicidal ideation. Due to her chorea, she frequently dropped cigarettes while smoking, posing a fire hazard and risk of burns.
Gibson et al. (2021), USA	Perceived effects of neuropsychiatric symptoms on functional status in early-stage Huntington's disease.	HD expansion carriers and caregivers (n = 15).	No	No	To assess patient and caregiver perception of the relationship between neuropsychiatric symptoms and functional status in HD.	Empirical study with secondary mention of SIB: Qualitative.	No	Participants frequently reported physical, cognitive, and social functional effects of living with HD and the negative impact on daily living and social withdrawal. Additionally, both caregivers and patients described symptoms of impulsiveness, irritability, abnormal fixations, and emotional instability. Authors reported several negative consequences associated with neuropsychiatric symptoms, including medication side effects such as mania and suicidal ideation, as well as significant emotional distress. Participants also described self-harm during depressive episodes and increases in blood pressure linked to anxiety. Self-harm was reported in the context of a depressive episode (did not elaborate further on frequency or form) and coded under the theme “Other negative effects” – a category that was less frequently coded compared to other themes.
Ibrahim et al. (2024), United Kingdom	Unravelling the diagnostic dilemma: Unusual presentation of Huntington's disease with predominant psychiatric symptoms and late-onset motor manifestations.	61-year-old male HD gene expansion carrier (n = 1).	No	No	Case report discussing the unusual presentation of HD.	Case report with description of SIB.	No	This case reflected elements of both suicidality and NSSI and highlighted the diagnostic complexity of HD in those who present with early behavioral or psychiatric symptoms: late-diagnosed HD in a 61-year-old male with a long-standing psychiatric history predating the diagnosis of HD. History of repeated suicide attempts and self-harming behaviors beginning in adolescence, including hanging and overdose, following early childhood sexual trauma. Presented with a complex psychiatric profile which comprised of obsessive-compulsive behaviors, auditory hallucinations, anxiety, and social withdrawal but showed no overt motor symptoms until later in the disease course; HD diagnosis was only confirmed through genetic testing after progressive cognitive decline and manifestation of motor symptoms prompted further investigation. Motor symptoms were incorporated into voluntary movements like head-banging which made it difficult to differentiate from deliberate self-injury. The patient currently had low mood and was head-banging for hours. The authors therefore noted psychiatric manifestations, particularly SIB and psychiatric behaviors, were primary and prolonged features of HD and long predated formal diagnosis.
Keenan et al. (2009), United Kingdom	How young people find out about their family history of Huntington's disease.	Recruited through the North of Scotland regional genetics clinic and the Scottish Huntington's Association (SHA). Young people aged between 9-28 (n = 33).	No	No	To explore young people's experiences of finding out about a family history of HD.	Empirical study with secondary mention of SIB: Qualitative.	No	Across the interviews, four types of disclosure experiences were identified: (1) having always been told, (2) being gradually told, (3) HD being kept a secret, and (4) learning about HD as a new diagnosis. Although the study did not primarily focus on psychiatric symptoms, many participants described significant psychological distress, identity disruption, and fear following disclosure of their genetic risk. One participant, Alison, like others who grew up with HD in the family, became involved with a group outside her home and adopted their “risky” lifestyle as a means of escape from her difficult family situation. She suggested that some on this behavior represented a form self-harm – an interpretation supported by clinical observations of other young people raised in HD-affected families and by one of the study's clinical geneticists (SAS). The study highlighted how the emotional distress of living under genetic uncertainty could act as a possible antecedent to SIB among adolescents or other vulnerable individuals, though no direct instances of SIB were recorded.
Keenan et al. (2014), United Kingdom	Help or hinderance: Young people's experiences of predictive testing for Huntington's disease.	Female participants were recruited from the Grampian Genetics Service or Scottish Huntington's Association, aged 17-26 years (n = 12).	No	No	To explore the experiences of young people undergoing predictive genetic testing for HD.	Case series with description of SIB.	No	Series reporting the experiences of 12 young people aged 17-26. While participants did not have a formal clinical diagnosis of HD, many described significant emotional distress, including fear, anticipatory anxiety, and in some cases a previous history and thoughts of self-harm. One participant (Michelle) took the test at 18-years-old. She grew up in a single parent family with her affected mother and sibling. Michelle disclosed a history of self-harm, but “is getting help for that”. Gaps in emotional support were highlighted in pre-test counselling. Those separating from parents and/or with traumatic experiences of growing up with HD could become very isolated during the test process. The post-test period was particularly difficult if there were unanticipated changes in family dynamics or an individual's result contradicted what they expected.
Maltby et al. (2016), United Kingdom	Irritability in Huntington's disease: Factor analysis of Snaith's Irritability Scale.	HD gene expansion carriers (n = 1264).	Non-HD carriers and relatives at no genetic risk served as a control group	Shoulson & Fahn system based on TFC scores: Pre-manifest (n = 250); Stage 1 (n = 276); Stage 2 (n = 311); Stage 3 (n = 315); Stage 4 (n = 101); Stage 5 (n = 11).	To analyze the factor structure of this scale among a HD population.	Empirical study with secondary mention of SIB: Psychometric validation.	SIS*	Using data from the European Huntington's Disease Network (EHDN), SIS assessments were analyzed via exploratory factor analysis and confirmatory factor analysis to examine the structural properties of the SIS. Self-harm was distinct from outward-directed temper, suggesting that some patients experience internalized irritability that may manifest in self-injurious thoughts or behaviors
Maltby et al. (2021), United Kingdom	The structure of mental health symptoms in Huntington's disease: Comparisons with healthy populations.	Pre-manifest HD (n = 1226); Manifest HD (n = 2509); Genotype negative (n = 808); Family control (n = 751).	No	Shoulson & Fahn system based on TFC scores: Stage 1 (n = 867); Stage 2 (n = 986); Stage 3 (n = 506); Stage 4 (n = 132); Stage 5 (n = 15).	To compare patterns and occurrences of mental distress between people with HD and genetically unaffected control groups, to determine systemic and environmental contributions to HD-related distress.	Empirical study with secondary mention of SIB: Cross-sectional.	PBA-s; HADS; SIS*	Using Enroll-HD data, conducted a latent profile analysis of emotional dysfunction in HD. The PBA-s includes ‘Suicidal Ideation’ with suggested prompts including: ‘Have you thought about harming yourself or even making an attempt at suicide? Are you planning to hurt yourself or kill yourself?’). The SIS includes: ‘I feel like harming myself’ and ‘The thought of hurting myself occurs to me’. Authors identified five emotional factors, including ‘self-harm’ (empirically separable from other mood symptoms such as anxiety, depression, and irritability, suggesting a distinct behavioral or affective pattern). Although not statistically significant, self-harm appeared heightened compared to controls. However, the term ‘self-harm’ was not elaborated in detail or conceptually defined beyond the items referring to ‘harming’ or ‘hurting’ oneself.
Omri et al. (2024), Germany	Clinical reasoning and challenges faced with onset psychotic symptoms in a case of combined Huntington's disease and Gayet-Wernicke Encephalopathy.	29-year-old female HD gene expansion carrier (n = 1).	No	No	To delineate the diagnostic trajectory and the sequential steps that culminated in identifying HD, a process that was further complicated by the absence of overt motor symptoms and the substantial influence of alcoholism.	Case report with description of SIB.	No	This case study delineated the diagnostic trajectory and sequential steps that culminated in identifying HD, complicated by substantial influence of alcoholism and absence of overt motor symptoms: a case of a patient who underwent multiple hospitalizations during adolescence due to self-harm and impulsive behaviors such as neglect of personal safety and risky decision-making. History of multiple hospitalizations during adolescence due to self-harm and impulsive behaviors such as neglect of personal safety and risky decision-making. Patient was admitted to hospital due to an acute psychotic episode and agitation, and high-risk behaviors (setting her home on fire and damaging furniture). She was misdiagnosed with schizophreniform disorder. Three months later the patient was readmitted to hospital exhibiting temporal disorientation and motor agitation, which was attributed to Wernick's encephalopathy. Following significant cognitive decline and the patient's third hospitalization, a HD diagnosis was confirmed by genetic testing and family history.
Shiwach & Patej (1993), United Kingdom	Aggressive behavior in Huntington's disease: A cross-sectional study in a nursing home population.	Patients residing in the Sue Ryder nursing home with HD (n = 27).	No	No	To describe the nature and frequency of aggressive behavior in this sample of patients, and to examine the relationship of aggressive behavior with functional impairment in HD.	Empirical study with secondary mention of SIB: Cross-sectional.	RAGE	This cross-sectional study described the nature and frequency of aggressive behavior and examined its relationship with functional impairment in HD residents in a nursing home. SIB was not elaborated beyond the RAGE item: ‘…has the patient inflicted any injury on him/herself?’ Behavioral ratings were made by nursing staff after a 3-day observation period. Self-injury was not numerically quantified; however it was reported that there was a relatively “low incidence of direct self-injury”, however, several participants demonstrated behaviors such as shouting, aggression, resisting care, and self-directed frustration. These were interpreted as manifestations of psychiatric morbidity and behavioral dysregulation, particularly in middle-to-late stages of the disease.
Van Duijn et al. (2018), Netherlands	Suicidal ideation and suicidal behavior according to the C-SSRS in a European cohort of Huntington's disease gene expansion carriers.	HD gene expansion carriers (n = 1438); Pre-manifest HD (n = 289); Manifest HD (n = 1149).	No	Shoulson & Fahn system based on TFC scores for manifest group: Stage 1 (n = 376); Stage 2 (n = 347); Stage 3 (n = 324); Stage 4/5 (n = 112).	To assess lifetime prevalence of various levels of suicidal ideation and suicidal behavior, using the C-SSRS to be able to compare results of future trials in HD populations with naturalistic reference data.	Empirical study with SIB as a primary focus.	UHDRS-B; PBA-s; C-SSRS	1.9% lifetime NSSI prevalence, exhibited in 26/1451 participants (6 pre-manifest; 20 manifest (according to TFC scores, 4 = Stage 1, 8 = Stage 2, 7 = Stage 3, 2 = Stage 4/5)). NSSI significantly more prevalent in those with moderate to severe depressed mood. No significant differences between pre-manifest and manifest, or between disease stages. However, most at mid-stage, potentially limiting power to detect meaningful differences across disease stages – may obscure subtle stage-related variations in SIB presentation and warrants further investigation in more stratified cohorts. Furthermore, it did not provide clear operational definition of NSSI, nor describe the specific forms or expressions.
Yang et al. (2024), USA	Juvenile-onset Huntington's disease: Spectrum and evolution of presenting movement disorders.	Juvenile-onset HD (n = 7)	No	No	The full spectrum of movement disorders in children with HD remains incompletely understood. Here, we detail seven cases of Juvenile HD and document movement disorders.	Case series with description of SIB.	No	This case series described seven individuals with juvenile-onset HD who presented with behavioral, psychiatric, and cognitive symptoms alongside a broad spectrum of movement disorders. Four of the seven cases (Patients 3, 4, 5, and 6) were reported to have engaged in SIB, though the details for Patient 4 were unclear and inconsistently reported between the table and the text. Patient 3 exhibited early psychiatric disturbances, including disruptive mood dysregulation disorder at age 10, followed by depression, self-harm, and suicide attempts. Patient 4, noted in the published table as showing SIB, had no such behaviors described in the main text. Instead, the authors reported declining school performance attributed to anxiety, poor executive function, and impulsivity. At age 11, risperidone was prescribed for aggressive behavior, poor sleep, and rapid cognitive decline. Patient 5 initially presented with motor apraxia and persistent toe-walking in childhood and was diagnosed with autism spectrum disorder (ASD) at age 10. SIB, including head banging and hair pulling, was documented. Patient 6 presented with delayed milestones, diagnoses of ADHD, ASD, and learning disability, as well as progressive gait decline with progressive falls from age 7. They were not listed as engaging in SIB in the table, yet the text described how quality of life was further affected by anxiety and aggressive, impulsive, and self-injurious behaviors.

Abbreviations: Columbia-Suicide Severity Rating Scale (C-SSRS), Hospital Anxiety and Depression Scale (HADS), Huntington's disease (HD), Non-Suicidal Self-Injury (NSSI), Problem Behaviors Assessment-short form (PBA-s), Psychogeriatric Dependency Rating Scale (PGDRS), Rating Scale for Aggressive Behavior in the Elderly (RAGE), Snaith Irritability Scale (SIS), Total Functional Capacity (TFC), Unified Huntington's Disease Rating Scale (UHDRS), Unified Huntington's Disease Rating Scale-Behavior (UHDRS-B).

A key challenge in recognizing SIB in Huntington's lies in the diagnostic complexity of its symptom presentation. Unlike populations with primary mental illness or developmental disorders, Huntington's is a progressive, genetically determined neurodegenerative process that affects cognitive, motor, and psychiatric domains. This triad introduces unique diagnostic ambiguities that may mask or alter the intention behind SIB and complicates behavioral interpretation. SIB occurred within the context of impaired executive functioning, disinhibition and impulsivity, emotional dysregulation, agitation, irritability, loss of autonomy, social withdrawal, trauma, depression, and hopelessness.^2–7^,10–15 Cognitive-affective precursors such as genetic uncertainty and identity disruption were also highlighted as particularly relevant in the context of Huntington's, with at-risk individuals, including those navigating predictive testing, markedly psychologically vulnerable.^5,6,10

SIB emerged not only as a psychiatric symptom but as a potential early disease feature observed before motor symptom onset, raising the possibility that it could represent an early behavioral marker in prodromal pathology.^2–5^,7 Yet, at-risk individuals who exhibit early behavioral or psychiatric symptoms are often misdiagnosed with primary psychiatric disorders, with consideration of underlying neurodegenerative processes missing from behavioral interpretation.^2,3 This highlights the importance of interpreting behavioral expressions not simply as symptoms but meaningful indicators of internal psychological states. Further, where injuries co-occur with motor dysfunction, boundaries between intentional self-harm, impulsive behavior, and accidental injury, become increasingly blurred,^4,5,7 particularly in relation to involuntary movements.² Individuals may present with bruises or lacerations that are attributed to chorea, dystonia, or falls, yet closer examination may reveal emotional distress, compulsive tendencies, or internalized aggression.

As Huntington's may shape SIB in ways that are phenomenologically distinct from other clinical groups, it may be difficult to apply standard psychiatric frameworks or general population risk assessments. Conceptual ambiguity was evident in the Huntington's literature. SIB was rarely explicitly labelled or classified as a distinct behavioral phenomenon – even when self-injurious or self-endangering acts were described. This absence of direct labelling may reflect its conceptualization and categorization within available measures.¹ Five studies reported formal assessment tools.^8–10^,13,15 These varied considerably, reflecting the heterogenous study aims (methodologically consistent with the largely secondary nature of SIB reporting). However, the tools did not distinguish self-injury from suicidal behavior, support the inference of intent, explore psychosocial factors, nor account for accidental injury caused by motor symptoms. Advancing our understanding requires a more thorough and methodologically rigorous approach. The development and adoption of clear operational definitions and targeted tools or adapted scales that specifically detect and track SIB-related phenomena in a way sensitive to the unique neurocognitive Huntington's profile, would decrease the likelihood of SIB becoming misclassified or overlooked. Key would be the ability to identify a range of SIBs, distinguish suicidal from non-suicidal intent, take account of the Huntington's symptom triad, and integrate psychosocial elements.

The current evidence-base fails to provide a coherent or comprehensive foundational understanding of SIB in Huntington's. Limited reporting may reflect a genuine infrequency of phenomenon. However, current data are insufficient to ascertain whether this indicates actual low prevalence or lack of focused examination. Regardless, rarity should not preclude investigation, particularly when SIB carries potentially significant implications for safety and wellbeing. We risk becoming caught in a vicious cycle where SIB remains conceptually ill-defined, absent from validated measures, diagnostically ambiguous, obscured and underreported clinically, and empirically overlooked. Within this trap, we are unable to ascertain true prevalence or characteristics, ensure accurate assessment and early identification, or develop appropriate clinical interventions tailored to the needs of individuals living with Huntington's. In this letter we have summarized what we can know of SIB from the sparse evidence-base available to us. We hope it serves as a call to action to generate and report new data about this existing but poorly defined phenomenon in Huntington's.

Footnotes

Acknowledgements

The authors would like to thank Dr Kieran Breen for his valuable support during the write-up process.

ORCID iDs

Inga Stewart

Fiona Stone

Esther Gathii

Ethical considerations

There are no human participants in this article and informed consent is not required.

Consent to participate

Not applicable.

Consent for publication

Not applicable.

Author contributions

Dr Inga Stewart: Conceptualization, Validation, Supervision, Writing – Reviewing & Editing. Fiona Stone: Conceptualization, Methodology, Writing – Original Draft, Writing – Reviewing & Editing. Esther Gathii: Conceptualization, Methodology, Validation.

All authors have contributed to, reviewed, and approved the final manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supplemental material

Supplemental material for this article is available online.

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