Psychological Interventions for People with Huntington’s Disease: A Call to Arms

Zarotti, Nicolò; Dale, Maria; Eccles, Fiona; Simpson, Jane

doi:10.3233/jhd-200418

Cited by 39 publications

(34 citation statements)

References 106 publications

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“…Even though the importance of psychological approaches in people with PD has received more recognition compared to other neurodegenerative conditions, such as Huntington’s disease and motor neuron disease (Anestis, Eccles, Fletcher, French, & Simpson, 2020; Simpson et al, 2019; Zarotti, Dale, Eccles, & Simpson, 2020; Zarotti, Mayberry, Ovaska‐stafford, Eccles, & Simpson, 2020), the current literature around psychological interventions for PD is mainly characterized by low‐level and/or underpowered studies, and more comprehensive high‐powered RCTs are urgently needed. In addition, since only five studies out of 56 involved samples with a mean age lower than 60, all of which showed promising results (Berardelli, Pasquini, Bloise, et al, 2015; Dreisig et al, 1999; Lundervold et al, 2013; Okai et al, 2013; Sproesser et al, 2010), further investigations are required to explore the impact of psychological interventions in younger patients, in particular due to the potentially lower severity of cognitive and motor difficulties.…”

Section: Discussionmentioning

confidence: 99%

Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand?

et al. 2020

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Purpose To explore the heterogeneity of the literature on psychological interventions for psychological difficulties in people with Parkinson’s disease (PD). Methods A scoping review was performed across five major databases (MEDLINE Complete, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library) up to June 2020. Results From an initial return of 4911 citations, 56 studies were included, of which 21 were RCTs. A relatively wide range of therapeutic models have been adopted with people with PD, from common therapies such as cognitive behavioural therapy (CBT) and mindfulness, to less frequent approaches, for example, acceptance and commitment therapy (ACT) and psychodrama. The clinical implications of the findings are discussed, and suggestions are provided for future research on intervention studies and key psychological outcomes. Conclusions CBT appears to be effective in treating depression and sleep disorders in people with PD, while psychoeducation programmes alone should be avoided. The use of CBT to improve anxiety, quality of life, and impulse control, as well mindfulness‐based interventions, should be undertaken with some caution because of insufficient research and inconsistent results. As we enter the new decade, more high‐quality evidence is required for psychological interventions in people with PD in general and to corroborate preliminary positive findings on the adoption of less frequent approaches such as ACT. Practitioner points Parkinson’s disease is a progressive neurodegenerative condition associated with several psychological difficulties which be targeted by psychological interventions. Currently, cognitive behavioural therapy (CBT) can be recommended to treat depression and sleep disorders in people with Parkinson’s, while psychoeducation alone should be avoided. Caution is advised regarding the use of CBT and mindfulness‐based interventions to improve anxiety, quality of life, and impulse control. Further evidence is required for less common approaches, such as acceptance and commitment therapy, psychodrama, and EMDR.

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Section: Discussionmentioning

confidence: 99%

Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand?

et al. 2020

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“…Intact metacognitive insight despite (impaired) cognitive performance in premanifest and early-HD is of clinical interest because it may be used to enhance subjective well-being and mental health (5). HD causes a wide range of psychological difficulties, but the literature on psychological interventions for people affected by HD is extremely limited (30)A recent feasibility study has shown that mindfulness-based cognitive therapy (which exploits metacognition) can be beneficial to individuals with premanifest HD (31). Our finding that early-HD gene-carriers retain good metacognitive insight further indicates that psychological therapies designed to apply this skill positively, may help maintain psychological well-being following a genetic diagnosis of HD.…”

Section: Discussionmentioning

confidence: 99%

Metacognitive insight into cognitive performance in pre and early-stage Huntington’s disease

Hewitt

White

Mason

et al. 2021

Preprint

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Objectives Insight is an important predictor of quality of life in Huntington's disease and other neurodegenerative conditions. However, estimating insight with traditional methods such as questionnaires is challenging and subject to limitations. This study experimentally quantified metacognitive insight into cognitive performance in Huntington's disease gene-carriers. Methods We dissociated perceptual decision-making performance and metacognitive insight into performance in healthy controls (n=29), premanifest (n=19) and early-manifest (n=10) Huntington's disease gene-carriers. Insight was operationalised as the degree to which a participant's confidence in their performance was informative of their actual performance (metacognitive efficiency) and estimated using a computational model (HMeta-d). Results We found that pre and early-manifest Huntington's disease gene-carriers were impaired in making perceptual decisions compared to controls. Gene-carriers required more evidence in favour of the correct choice to achieve similar performance and perceptual impairments were increased in those with manifest disease. Surprisingly, despite marked perceptual impairments, Huntington's disease gene-carriers retained metacognitive insight into their perceptual performance. This was the case after controlling for confounding variables and regardless of disease stage. Conclusion We report for the first time a dissociation between impaired cognition and intact metacognition (trial-by-trial insight) in the early-stages of a neurodegenerative disease. This unexpected finding contrasts with the prevailing assumption that cognitive deficits are associated with impaired insight. Future studies should investigate how intact metacognitive insight could be used by some early Huntington's disease gene-carriers to positively impact their quality of life. Key words: Huntington's disease, decision-making, cognition, insight, metacognition

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“…Additionally, there is a high prevalence of spiritual and existential distress (hopelessness, concern with death and dying, suicidality), 10,11 which is more salient than in other neurological diseases 12 . However, there are no evidence‐based palliative care models or psychotherapeutic interventions that can ameliorate these distressing symptoms among people with the HD gene mutation 9,13,14 …”

Section: Introductionmentioning

confidence: 99%

“…Despite the multitude of PROs, the non‐motor ones (e.g., cognition or depression) seem to be more potent contributors to HRQOL scores than do the motor impairments, and perhaps more so in the earlier disease stages. 7 , 8 , 9 Additionally, there is a high prevalence of spiritual and existential distress (hopelessness, concern with death and dying, suicidality), 10 , 11 which is more salient than in other neurological diseases. 12 However, there are no evidence‐based palliative care models or psychotherapeutic interventions that can ameliorate these distressing symptoms among people with the HD gene mutation.…”

Section: Introductionmentioning

confidence: 99%

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Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life

Sokol

Troost

Kluger

et al. 2021

Ann Clin Transl Neurol

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Objective Previous work in Huntington’s disease (HD) has shown that a sense of meaning and purpose (M&P) is positively associated with positive affect and well‐being (PAW); however, it was unknown whether HD‐validated patient‐reported outcomes (PROs) influence this association and how M&P impacts PROs in the future. Our study was designed to examine if HD‐validated PROs moderate the relationship between M&P and PAW and to evaluate if baseline M&P predicts 12‐ and 24‐month changes in HD‐validated PROs. Methods This was a longitudinal, multicenter study to develop several PROs (e.g., specific for the physical, emotional, cognitive, and social domains) for people with HD (HDQLIFE). The sample consisted of 322 people with HD (n = 50 prodromal, n = 171 early‐stage manifest, and n = 101 late‐stage manifest HD). A single, multivariate linear mixed‐effects model was performed with PAW as the outcome predicted by main effects for M&P and several moderators (i.e., an HD‐validated PRO) and interactions between M&P and a given PRO. Linear‐mixed models were also used to assess if baseline M&P predicted HD‐validated PROs at 12 and 24 months. Results Higher M&P was positively associated with higher PAW regardless of the magnitude of symptom burden, as represented by HD‐validated PROs, and independent of disease stage. In our primary analysis, baseline M&P predicted increased PAW and decreased depression, anxiety, anger, emotional/behavioral disruptions, and cognitive decline at 12 and 24 months across all disease stages. Interpretation These findings parallel those seen in the oncology population and have implications for adapting and developing psychotherapeutic and palliative HD interventions.

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Psychological Interventions for People with Huntington’s Disease: A Call to Arms

Cited by 39 publications

References 106 publications

Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand?

Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand?

Metacognitive insight into cognitive performance in pre and early-stage Huntington’s disease

Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life

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