The structure of mental health symptoms in Huntington’s disease: Comparisons with healthy populations

Maltby, John; Ovaska-Stafford, Noora; Gunn, Sarah

doi:10.1080/13803395.2021.2002824

Cited by 4 publications

(7 citation statements)

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“…Importantly, significant differences in symptom frequency between pwHD (manifest and premanifest) and noncarriers (family controls and genotype‐negative) were only found for three indices of the PBA‐s, and not for the remaining eight (depression, suicidal ideation, anxiety, irritability, aggression, perseveration, paranoia, and hallucinations). This supports previous findings that a degree of psychological distress in various forms is shared between carriers and noncarriers across HD‐affected families (Achenbach & Saft, 2021 ; Maltby et al., 2021 ). Descriptions of psychosocial contributions to HD‐related distress may support this interpretation, as both carriers and noncarriers may experience intense anxiety and distress relating to changed familial narratives, disrupted interpersonal dynamics, grief, and lost plans for the future (Berrios et al., 2002 ; Brouwer‐DudokdeWit et al., 2002 ; Tibben et al., 1997 ; Yu et al., 2019 ).…”

Section: Discussionsupporting

confidence: 91%

“…These include cognitive changes in memory, executive function, information processing, and emotional lability, and mental health symptoms such as depression, anxiety, irritability/anger, obsessive–compulsive behaviors, apathy, perseveration, and (less commonly) psychosis (Rickards et al., 2011 ; van Duijn, 2017 ; van Duijn et al., 2014 , 2007 ). Although motor changes are viewed as the most characteristic symptoms of HD, both people with HD (pwHD) and their families report that mental health is a primary issue in care (Mahmood et al., 2022 ; Smith et al., 2015 ), and mental distress has been demonstrated throughout HD families, including genetically unaffected individuals (Achenbach & Saft, 2021 ; Maltby et al., 2021 ).…”

Section: Introductionmentioning

confidence: 99%

“…This enables the identification of symptoms unique to pwHD and those shared by other relevant HD populations. One recent exploration (Maltby et al., 2021 ) of underlying structures of psychological distress in HD populations identified four latent factors across manifest and premanifest HD, family control, and genotype‐negative groups, comprising symptoms relating to depression, anxiety, temper, and self‐harm. No significant differences in anxiety levels were identified between pwHD and control groups, and few mental health differences were found between people with manifest HD and family controls (although the manifest group reported higher depression, temper, and self‐harm than the genotype‐negative group).…”

Section: Introductionmentioning

confidence: 99%

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Mental health symptoms among those affected by Huntington's disease: A cross‐sectional study

et al. 2023

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Background Although cognitive and motor symptoms of Huntington's disease (HD) are associated with disease progression, the underlying causes of psychological symptoms are not as clearly understood. Recent evidence suggests that some mental health difficulties experienced by people with HD are shared by noncarriers within HD families. Accordingly, there is a need to evaluate potential systemic contributors to HD mental distress, to support meaningful interventions for psychological symptoms in people with HD and affected families. Method We used short‐form Problem Behaviors Assessment mental health symptom data from the international Enroll‐HD data set to characterize mental health symptoms across eight HD groups: Stages 1–5, premanifest and genotype‐negative individuals, and family controls ( n = 8567) using chi‐square analysis with post hoc comparisons. Results We identified that people with later‐stage HD (Stages 2–5) had significantly higher apathy, obsessive–compulsiveness, and (from Stage 3) disorientation than the remaining groups at a medium effect size, and that these findings largely held across three measure administrations over time. Conclusions These findings highlight the critical symptoms in manifest HD from Stage 2 onward, but also demonstrate that crucial symptoms such as depression, anxiety, and irritability are present across HD‐affected groups (including noncarriers of the gene expansion). The outcomes highlight a need for specific clinical management of later‐stage HD psychological symptoms, and for systemic support across affected families.

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Section: Discussionsupporting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Mental health symptoms among those affected by Huntington's disease: A cross‐sectional study

et al. 2023

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“…The participants rated a lower degree of satisfaction with their occupational performance. This dissatisfaction could be due to depression and anxiety, very frequently related to HD (Maltby et al, 2021), and for that, they feel a lack of pleasure when performing occupations, which at the same time could influence their experience of satisfaction. A previous study reported that sadness and depressed mood were early symptoms of HD (Paoli et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

Occupational performance in Huntington’s disease: A cross-sectional study

Simón-Vicente

García

Rivadeneyra-Posadas

et al. 2023

British Journal of Occupational Therapy

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Introduction: Huntington’s disease (HD) is an autosomal dominant neurodegenerative disorder characterized by motor dysfunction, cognitive impairment, and psychiatric disorders. These symptoms cause functional limitations in occupational performance. This study aimed to describe the difficulties in self-care, productivity, and leisure activities and to analyze the patients’ own perception and satisfaction and the association with sex, age, disability, HD severity, and quality of life. Method: We conducted an observational, retrospective study in 38 patients with HD without cognitive impairment at the Burgos University Hospital. We assessed occupational performance, quality of life, and HD severity with the Canadian Occupational Performance Measure, Short-Form Health Survey 12, Unified Huntington’s Disease Rating Scale, Total Functional Capacity, and the Problems Behavior Assessment. Results: One hundred sixty-five occupations (median 4, range 2–7) were categorized as self-care (50.90%), leisure (30.30%), and productivity (18.79%). Patients reported a higher degree of satisfaction with the activities prioritized than with the degree of performance. Elderly HD patients reported more satisfaction in leisure and women in self-care. Self-ratings of satisfaction in productivity were associated with higher levels of mental wellbeing. Conclusions: HD patients have problems with their daily life occupations, particularly with self-care. This underlines the need for assessment tools that capture the complexity of occupations.

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“…Difficulties associated with HD can include emotional lability, irritability, anxious or obsessive-compulsive thoughts, low mood, demotivation and apathy and, less commonly, psychosis [ 10 , 11 , 12 , 13 ]. These can be highly challenging for both pwHD and those providing care and support [ 14 , 15 , 16 , 17 ]. Many of these difficulties may be associated with a wide range of losses linked with HD, which not only affect individuals directly (e.g., loss of family members to HD and legacy fears), but also crucial components of psychosocial functioning such as independence, communication, identity, and roles [ 18 ].…”

Section: Introductionmentioning

confidence: 99%

Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington’s Disease: A Descriptive, Evidence-Based Model

Dale

Wood

Zarotti

et al. 2022

JPM

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Huntington’s disease (HD) is an inherited, life-limiting neurodegenerative condition. People with HD experience changes in cognitive, motor and emotional functioning, and can also, mainly at later stages, exhibit behaviours that professionals and carers might find distressing such as hitting others, throwing objects, swearing or making inappropriate comments. While clinical formulation (an individualised approach used by mental health professionals to describe an individual’s difficulties) is a helpful tool to conceptualise patients’ wellbeing, a specific formulation framework has not yet been developed for HD. However, evidence has shown that formulation can help guide clinical interventions and increase consistency of approach across multi-disciplinary teams, refine risk management, and improve staff or carers’ empathic skills and understanding of complex presentations. As a consequence, this paper proposes a new clinical formulation model for understanding distress among people with HD, based on a biopsychosocial framework. More specifically, this includes key elements centring on an individual’s past experience and personal narratives, as well as anticipatory cognitions and emotions about the future. In-depth discussions regarding the components of the model and their importance in HD formulations are included, and a fictional yet representative case example is presented to illustrate their application within the context of personalised care.

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The structure of mental health symptoms in Huntington’s disease: Comparisons with healthy populations

Cited by 4 publications

References 46 publications

Mental health symptoms among those affected by Huntington's disease: A cross‐sectional study

Mental health symptoms among those affected by Huntington's disease: A cross‐sectional study

Occupational performance in Huntington’s disease: A cross-sectional study

Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington’s Disease: A Descriptive, Evidence-Based Model

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