Psychosocial interventions affecting global perceptions of control in people with Parkinson's disease: a scoping review.

PURPOSE: Perceived control is an important construct for the psychological well-being of people affected by chronic conditions, and higher perceived control is associated with better outcomes. Psychosocial interventions have been trialled in these populations to improve both global and specific perceptions of control. However, most interventions involving people with Parkinson's have focused on single-domain forms of control, while those addressing global perceived control are yet to be reviewed. This study aimed to identify and map the types of psychosocial interventions in individuals with Parkinson's which have included forms of global perceived control as an outcome. MATERIALS AND METHODS: Scoping review based on a search across MEDLINE, PsycINFO, CINAHL, Academic Search Ultimate. RESULTS: From an initial return of 4388 citations, 12 citations were eventually included. These consisted of 8 quantitative and 4 qualitative studies, and covered 4 overarching categories of psychosocial interventions. Mixed results were found for cognitive, educational, and physical interventions, while a randomised controlled trial on mindfulness-based lifestyle programme showed more preliminary positive evidence. CONCLUSIONS: Further rigorous research is required on the topic to build on these preliminary findings. In the meantime, clinicians may need to consider programmes which proved effective with populations similar to people with Parkinson's.IMPLICATIONS FOR REHABILITATIONPerceived control is a psychological construct important for people with chronic illnesses, which can be targeted by psychosocial interventions.This article reviewed psychosocial interventions targeting global forms of perceived control in Parkinson's.Mixed results were reported for the cognitive, educational, and physical interventions identified, while a randomised controlled trial on a mindfulness-based lifestyle programme showed more promising evidence.In the meantime, clinicians may need to consider programmes found to be effective with people with similar conditions to Parkinson's.

Perceived control as a predictor of medication adherence in people with Parkinson's: a large-scale cross-sectional study.

PURPOSE: Medication adherence is a multi-faceted construct associated with several positive consequences in people with chronic conditions. However, non-adherence currently represents a major issue in Parkinson's, potentially due to low perceptions of control. This study investigated the predictive ability of several aspects of perceived control on adherence in people with Parkinson's, while accounting for previously established predictors such as depression and medication variables. MATERIALS AND METHODS: An online cross-sectional survey was carried out with 1210 adults with Parkinson's from 15 English-speaking countries. Demographic and clinical questions, as well as measures of depression, aspects of perceived control, and medication adherence were included. Pearson's correlations and a 4-block hierarchical regression analysis were performed to assess the relationship between the variables. RESULTS: Perceived control explained a slightly higher amount of variance in medication adherence compared to medication variables when entered in the last block. Unexpectedly, depression was not significantly related with adherence. Internal locus of control was an independent negative predictor of adherence, while external dimensions of locus of control emerged as independent positive predictors. CONCLUSIONS: In people with Parkinson's, perceptions of control may have a larger impact on adherence compared to medication variables. Implications for clinical practice and future research are discussed.Implications for RehabilitationPerceived control and depression are considered important constructs for medication adherence in Parkinson's, which in turn is often problematic for affected individuals.The specific predictive value of different aspects of perceived control on medication adherence in Parkinson's is currently unclear.This large-scale study found that perceptions of control may have a larger impact on adherence compared to medication variables, while depression was unrelated to it.A need for psychologically-informed interventions, person-centred approaches to medication management, and Parkinson-specific measures of adherence are highlighted.

Guided self-help for anxiety among Huntington's disease gene expansion carriers (GUIDE-HD) compared to treatment as usual: a randomised controlled feasibility trial.

BACKGROUND: Huntington's disease (HD) is an adult-onset genetic neurodegenerative condition associated with cognitive decline, motor impairments, and emotional difficulties. Anxiety affects up to 71% of HD gene expansion carriers (i.e., those with the version of the gene that causes HD) and can negatively impact quality of life, worsen other HD symptoms, and increase suicide risk. Therefore, helping people with their anxiety should be a clinical priority. A significant evidence base now exists for low-cost talking therapies for anxiety, such as guided self-help, and with people with other neurodegenerative conditions (e.g., Parkinson's disease). However, this type of intervention has not been specifically assessed with HD gene expansion carriers. METHODS: This protocol describes an exploratory randomised controlled feasibility study of a psychological intervention for anxiety for HD gene expansion carriers. The 10 session guided self-help intervention ('GUIDE-HD') is based on a blend of second and third wave cognitive behavioural models of anxiety (cognitive behaviour therapy [CBT] and acceptance and commitment therapy [ACT]) and is adapted to meet the specific needs of an HD population. This study will compare guided self-help with treatment as usual (TAU), with 15 HD gene expansion carriers randomly allocated to each group. Participants will be recruited across the UK. Quantitative data will be collected pre-intervention, immediately post-intervention, 3-month post-intervention and 6-month post-intervention. Qualitative data will be collected at one month post-intervention from participants, including HD carers. The data will be analysed to assess whether the current intervention and study design are feasible to progress to a larger randomised controlled trial. Feasibility has been defined in terms of recruitment rate, retention rate to both trial arms, intervention adherence, and acceptability of the intervention and measurement tools. DISCUSSION: Given the lack of evidenced interventions to date to support the wellbeing of people with the expanded Huntington's gene, this study will assess the feasibility of progressing this particular intervention to a full trial. To try and increase the acceptability of the intervention, a number of stakeholders, including those affected by HD and in caring roles, have been fundamental to the creation of the intervention (e.g., therapy manual, planned therapy process) to date. TRIAL REGISTRATION: Trial ID: ISRCTN47330596 . Date registered: 28/09/2022. Protocol version and date: Version 2, 09/06/22. Trial sponsor organisation and contact: Leicestershire Partnership NHS Trust (Dave Clarke). Role of sponsor: Overall responsibility for the conduct and governance of the trial. Role of funder: Review of initial research proposal.

Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis.

OBJECTIVES: Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals. METHODS: Interviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF). RESULTS: All three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite). DISCUSSION: To promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities.

Stigma, self-compassion, and psychological distress among people with Parkinson's.

PURPOSE: People with Parkinson's disease (hereafter Parkinson's) can experience stigma through the attitudes and actions of others (enacted stigma) and through anticipation of enacted stigma and internalisation of negative stereotypes (felt stigma). Self-compassion may protect against the impact of stigma. This study aimed to investigate the relationships between self-compassion, stigma, and psychological distress among people with Parkinson's. METHODS: A total of 130 people with Parkinson's completed questionnaires measuring self-compassion, enacted and felt stigma, and depression, anxiety, and stress. Correlation, mediation, and moderation models were used to investigate relationships between variables. RESULTS: All variables correlated significantly in the expected directions. Felt stigma mediated the relationship between self-compassion and the three outcome variables - depression, anxiety, and stress. Self-compassion did not moderate the relationship between enacted stigma and distress and suggested enacted stigma was associated with distress, regardless of levels of self-compassion. CONCLUSIONS: Self-compassion and both enacted and felt stigma are important predictors of distress for people with Parkinson's. Part of the relationship between lower self-compassion and psychological distress appears to occur via the internalisation of stigma. These findings may be relevant to the development of individualised and societal interventions with the aim of improving the psychological wellbeing of people with Parkinson's.Implications for rehabilitationSelf-compassion was associated with lower levels of psychological distress (i.e., depression, anxiety, and stress) and self-stigma partially mediated this relationship.Self-compassion did not moderate the relationship between enacted stigma and psychological distress, suggesting enacted stigma increases distress, regardless of self-compassion.The development and assessment of the effectiveness of compassion-focused interventions tailored for people with Parkinson's may be important as well as systemic stigma focused interventions.

Third wave cognitive behavioural therapies for people with multiple sclerosis: a scoping review.

PURPOSE: Multiple sclerosis (MS) is a chronic condition linked to a wide range of psychological difficulties. While traditional cognitive behavioural therapy has been studied extensively with people with MS, much less is known about more recent "third wave" approaches. METHODS: A scoping review was carried out by performing a systematic search across MEDLINE Complete, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library up to January 2022. RESULTS: From an initial return of 8306 citations, 35 studies were included, 20 of which were randomised controlled trials (RCTs). These showed that four third wave approaches have been investigated with people with MS to date: acceptance and commitment therapy (ACT), dialectical behaviour therapy (DBT), mindfulness-based stress reduction (MBSR), and mindfulness-based cognitive therapy (MBCT). MBSR and MBCT may be helpful to address a range of psychological difficulties up to three months post-intervention. However, MS-specific adaptations may be required, and more evidence is needed on longer-term effectiveness. Limited evidence is also available for DBT and ACT, but additional research is warranted before any recommendation can be made. CONCLUSIONS: As third wave approaches keep being refined, further more rigorous investigations are needed to implement them to the benefit of people with MS. Implications for RehabilitationMultiple sclerosis is linked to a wide range of psychological difficulties in adults.Little is currently known on third wave psychotherapies for people with MS.Mindfulness-based stress reduction and mindfulness-based cognitive therapy may be helpful to address a wide range of difficulties in MS.Specific adaptations may be needed to deliver suitable therapies to people with MS.Additional research is warranted to build on preliminary findings for DBT and ACT.

Compassion-Focused Therapy for an Older Adult with Motor Functional Neurological Disorder: A Case Study.

OBJECTIVES: Motor functional neurological disorder (mFND) is a condition where individuals may experience difficulties such as tremors, gait impairments, and paralysis which are not explained by identified structural damage to the brain. Studies on chronic conditions have suggested that psychological interventions such as compassion-focused therapy (CFT) may be effective in improving well-being in people with mFND. However, no evidence is currently available on psychotherapy for older people with mFND. METHODS: A 12-session CFT intervention was delivered to an 81-year-old British male with mFND. Standardized measures were administered at baseline and post-intervention. RESULTS: At post-intervention, a 30% decrease in perceived psychological impact of mFND was found, along with clinically significant changes in anxiety and depression. Good levels of feasibility and acceptability were also observed. CONCLUSIONS: To our knowledge, this is the first evidence of the feasibility, acceptability, and potential effectiveness of CFT for psychological difficulties linked with mFND, as well as the first evidence for any psychotherapy with an older adult with mFND. CLINICAL IMPLICATIONS: CFT shows the potential to be effective, feasible, and acceptable for treating difficulties linked with mFND in older people. However, further high-quality investigations based on experimental designs are needed to build on the present preliminary findings.

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

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.

'It's working together with what you've got': Healthcare professionals' experiences of working with people with combined intellectual disability and personality disorder diagnoses.

BACKGROUND: People with intellectual disability often receive diagnoses which may complicate their clinical care. Among these, personality disorder diagnoses are still considered contentious. Little is also known on the perspectives of staff caring for people with intellectual disability who have received a personality disorder diagnosis. METHODS: Three focus groups were carried out to explore 15 healthcare professionals' subjective experiences of working with people with intellectual disability who also have a recorded additional diagnosis of personality disorder. Data were analysed through thematic analysis. FINDINGS: Four overarching themes were identified: (a) diagnostic issues and the need for person-centred approaches; (b) challenges and adjustments to working with combined intellectual disability and PD diagnoses; (c) the importance of multidisciplinary team training, support, and cohesion; (d) provision issues and barriers to service access. CONCLUSIONS: The themes are outlined in depth and a number of implications for clinical management and service improvement are discussed.

Online Emotion Regulation for an Adolescent With Misophonia: A Case Study.

Misophonia is a novel diagnosis characterised by extreme and uncontrollable autonomic reactions and emotional responses to selective auditory stimuli, which can significantly impair an individual's daily life. No agreed diagnostic criteria are currently available for misophonia, and any therapeutic guidance is yet to be formalised. In this case study, a tailored psychological intervention based on the cognitive model and developed around emotion regulation principles and techniques was adopted to treat misophonia in a 16-year-old female from the United Kingdom. The treatment lasted for 15 weeks and was delivered online due to the ongoing COVID-19 social distancing regulations. The results showed that the intervention was feasible and acceptable, and effective at reducing levels of misophonic symptoms from severe to moderate/mild while also improving emotion dysregulation and overall anxiety and depression. Particular improvements were observed for specific skills such as acceptance and awareness of emotional responses and increased access to emotion regulation strategies. These findings also translated into a number of reported daily life improvements in the client's psychological and social well-being. As the current evidence base on misophonia continues to develop, more methodologically rigorous research is warranted to build on the present findings and inform the adoption of further psychotherapeutic approaches to treat this new condition.

More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington's Disease.

Huntington's disease (HD) is a rare and complex condition where affected individuals, family members, caregivers, and clinicians face a number of both long-term and fluctuating challenges. The predominant biomedical framework adopted in HD to date has traditionally viewed it as a brain disorder first and foremost. As a consequence, one of the most challenging aspects of the condition-psychological difficulties and their care-is often not given the emphasis it deserves in everyday clinical practice. Here, we propose a manifesto outlining five points to address the quality, effectiveness, availability, and accessibility of psychological care in HD. These include (1) Listening to People with HD, (2) Reformulating Difficulties Psychologically, (3) Exploring New Interventions, (4) Increasing Psychological Provision, and (5) Learning from Other Conditions. As the search for a cure continues, we hope that this manifesto will create a new impetus towards refining the current approach to psychological difficulties in HD and ultimately improve the quality of life of the tens of thousands of families affected by HD worldwide.

'It's a double whammy': A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19.

OBJECTIVES: The purpose of this study was to explore the experiences of individuals with Parkinson's through the theoretical lens of illness uncertainty during the first UK full lockdown period (March-June 2020) put in place due outbreak of the COVID-19 pandemic. METHODS: Individual semi-structured interviews were carried out via telephone in May 2020 with 10 individuals with Parkinson's (six men and four women) recruited from Parkinson's UK. Interviews were recorded and transcribed verbatim, and thematic analysis was adopted to analyse the resulting data. RESULTS: Four overarching themes emerged from the interview data: (1) COVID-19 amplifying existing fears and difficulties around the uncertainty of Parkinson's; (2) practical and psychological efforts to manage uncertainty; (3) benefit-finding as a way of acknowledging the positives of lockdown; (4) risk and future management in the context of uncertainty. DISCUSSION: Participants reported a range of implicit and explicit strategies to cope with the 'double whammy' of uncertainty caused by having Parkinson's during a global pandemic. While these were generally successful in maintaining well-being, it is important that such successful accounts are used to help inform novel strategies and interventions targeting individuals who might need additional support.

The nutritional management of people living with amyotrophic lateral sclerosis: A national survey of dietitians.

BACKGROUND: People living with amyotrophic lateral sclerosis (ALS) face many challenges with respect to taking adequate nutrition. Growing evidence links weight loss with negative prognostic outcomes. We aimed to explore the practice of dietitians in the UK with regard to the nutritional management of ALS. METHODS: A national online survey was disseminated via professional groups, social media and newsletters to UK healthcare professionals between September and November 2018. The survey examined the nutritional management of ALS. Dietitian responses are reported in the present study. RESULTS: In total, 130 dietitians responded to the survey. Two-thirds reported that ALS comprised less than 20% of their total patient caseload. Forty-two percent reported that nutritional screening took place in their organisation. One-half of dietitians reported that patients were referred for dietetic assessment at 'about the right time', although 44% reported referrals were made too late. The majority (83%) of dietitians used resting energy expenditure predictive equations not validated in ALS. When setting weight goals, dietitians reported most frequently recommending weight maintenance if the patient's body mass index was 18.5-25 kg m-2 (72%), 25-30 kg m-2 (98%), and > 30 kg m-2 (79%). In addition, 43% reported that people with ALS were not weighed sufficiently frequently. CONCLUSIONS: Although the importance of early nutritional assessment is recognised, the timeliness of dietetic input and on-going monitoring of nutritional status in ALS care might not currently be ideal. Dietitians report using energy requirement predictive equations and setting weight goals that may not promote positive outcomes. Further research is required to understand the optimal nutritional management of ALS.

Experiences of Mindfulness-Based Cognitive Therapy for Premanifest Huntington's Disease.

BACKGROUND: Psychological difficulties such as anxiety, depression, and irritability are common in Huntington's disease, even for premanifest individuals. However, very little evidence exists of psychological approaches to manage this distress. We have conducted a feasibility study with an embedded qualitative component to investigate the possibility of using mindfulness-based cognitive therapy (MBCT) and present here the findings from the qualitative data. OBJECTIVE: To investigate the experience of premanifest individuals learning and practising mindfulness through completing a course of MBCT. METHODS: Twelve premanifest individuals completed a course of MBCT and attended three follow up reunion meetings over the following year. Eleven participants agreed to be interviewed post-course and ten participants one year post-course about their experience of the course and any impact on their lives. Seven participants nominated a friend or relative (supporter) to be involved in the research, of whom six agreed to be interviewed post-course and two at one year about the impact of the course on the participants. Data were analysed using reflexive thematic analysis. RESULTS: Four themes were constructed from the data: 1) A meeting of minds: the group facilitating learning and support; 2) Mindfulness is hard, but enables more effective emotional management; 3) Mindfulness can change the relationship with self and others; and 4) Benefiting from mindfulness: the importance of persistence. CONCLUSION: The participants who completed the course found it beneficial. Some participants reported reductions in psychological distress, a greater sense of calm and better emotion regulation, with some of these positive changes also noticed by supporters. MBCT is worthy of further investigation for this population.

Delivery of nutritional management services to people with amyotrophic lateral sclerosis (ALS).

OBJECTIVES: The aim of this study was to investigate how nutritional management services for people with Amyotrophic Lateral Sclerosis (pwALS) are structured in the UK, in order to gain insight into current practice and identify key barriers and enablers to delivering and providing services. Methods: A three-part, sequential mixed-methods study was conducted that comprised (i) a thematic analysis of data from five focus groups (with 47 ALS health professionals from 41 UK organizations and four service user representatives), (ii) a nationwide cross-sectional survey (281 ALS healthcare professionals) and (iii) a freedom of information request (251 organizations). Results: UK nutritional management services for pwALS are coordinated from specialist (n = 22) and non-specialist care centers (n = 89), with national variability in the organization and delivery of services. Multidisciplinary working was highlighted to facilitate the coordination of nutritional care. However, the need to provide evidence-based continuing education for HCPs was evident. Overall, the lack of clear guidelines on the nutritional management of people with ALS was identified as a key barrier to the delivery of effective nutritional care, as was the lack of transparency and consistency in the commissioning of nutritional services. Further concerns over the timeliness of the dietetic intervention and equity of access and provision were raised. Conclusions: Our findings suggest that development of guidelines for nutritional management, particularly at diagnosis and pre-gastrostomy, could drive standardization of high quality nutritional care for pwALS. Such guidance has the potential to reduce inequalities in geographical provision by providing clarity for those commissioning specialist nutrition services.

Psychological interventions for people with motor neuron disease: a scoping review.

OBJECTIVE: Motor neuron disease (MND) is a rapidly progressive neurodegenerative condition with no known cure. MND can affect every aspect of a person's life and has been associated with a wide range of psychological difficulties, which can occur from pre-diagnosis through to the condition's later stages. However, very little research has been conducted on psychological interventions for people with MND (pwMND). This paper aimed to provide the first review specifically targeting psychological interventions in MND and offer potential directions for future research. Methods: A scoping review was carried out across five major databases (PubMed, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library) until 1st of March 2020. Results: From an initial return of 1278 citations, 10 papers were included in the review. These included three randomized controlled trials (RCTs), two quasi-experiments, three uncontrolled pretest-post-test designs, one single case study, and one qualitative secondary analysis. The existing studies focused on a limited number of psychological outcomes and did not take into account site of MND onset or level of depression/anxiety before intervention. Implications for clinical practice are discussed and suggestions for future research are provided. Conclusions: The literature on psychological interventions is still extremely sparse. Mindfulness-based stress reduction (MBSR) and cognitive behavioral therapy (CBT) based on the stress-coping model show promise in RCTs, but require further evaluation. The need for further development and evaluation of psychological interventions to improve the well-being of pwMND cannot be overstated, particularly as the struggle toward the discovery of an effective treatment for MND continues.

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

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.

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

BACKGROUND: Although Huntington's disease (HD) can cause a wide range of psychological difficulties, no review has ever been carried out on the range of psychological interventions adopted with this population. OBJECTIVE: To scope the literature on psychological interventions for psychological difficulties in people affected by HD. METHODS: A systematic scoping review was performed across MEDLINE, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library up to 1 March 2020. RESULTS: From an initial return of 1579 citations, a total of nine papers were considered eligible for review. These included a qualitative investigation, three case studies, two case series, two uncontrolled pretest-posttest designs, and only one randomised control trial (RCT). Despite the wide range of psychological difficulties which can be experienced by people affected by the HD gene expansion, the adopted interventions only accounted for five main psychological outcomes (anxiety, apathy, depression, irritability, and coping). Further discussion and suggestions for future research are provided for each outcome. CONCLUSION: The current literature on psychological interventions in people affected by HD is extremely limited both in terms of methods and addressed clinical outcomes. Consequently, no conclusions can be offered yet as to which psychological therapy may help this population. As further more comprehensive research is urgently needed for this group, the ultimate aim of the present review is to act as a call to arms for HD researchers worldwide to help shed light on the most effective way to translate psychological theory into practice for the benefit of people affected by HD.

Interventions to promote oral nutritional behaviours in people living with neurodegenerative disorders of the motor system: A systematic review.

BACKGROUND & AIMS: Weight loss is common in people with neurodegenerative diseases of the motor system (NDMS), such as Parkinson's disease and Amyotrophic Lateral Sclerosis, and is associated with reduced quality of life, functional ability and survival. This systematic review aims to identify interventions and intervention components (i.e. behaviour change techniques [BCTs] and modes of delivery [MoDs]) that are associated with increased effectiveness in promoting oral nutritional behaviours that help people with NDMS to achieve a high calorie diet. METHODS: Eight electronic databases including MEDLINE and CINAHL were searched from inception to May 2018. All interventions from included studies were coded for relevant BCTs and MoDs. Methodological quality of studies was assessed using the Cochrane risk of bias tool. RESULTS: Fourteen studies were included. Of these, eight studies reported interventions to assist with swallowing difficulties and six studies reported interventions targeting dietary content. Beneficial effects in managing swallowing difficulties were observed with video assisted swallowing therapy, lung volume recruitment and swallowing management clinics with outpatient support. In contrast, studies reporting effectiveness of chin down posture, use of thickened liquids and respiratory muscle training were inconclusive. Positive effects in interventions targeting dietary content included the use of food pyramid tools, individualised nutritional advice with nutritional interventions, electronic health applications, face-to-face dietary counselling and high fat, high carbohydrate and milk whey protein supplements. Individualised nutritional advice with weekly phone contact did not appear to be effective. Most frequently coded BCTs were 'instructions on how to perform the behaviour', 'self-monitoring' and 'behavioural practice/rehearsal'. Most commonly identified MoDs were 'human, face-to-face' and 'somatic therapy'. However, the robustness of these findings are low due to the small number of studies, small sample sizes and large between-study variability. CONCLUSIONS: Despite the limited evidence, these findings may help inform the development of more effective interventions to promote oral nutritional behaviours in people with NDMS. However, further research is needed to demonstrate which interventions, or intervention components, yield most benefit.

Health care professionals' views on psychological factors affecting nutritional behaviour in people with motor neuron disease: A thematic analysis.

Motor neuron disease (MND), also known as amyotrophic lateral sclerosis, is a neurodegenerative disorder that causes progressive muscle paralysis and typically leads to death within 3 years. As no cure is currently available, symptomatic management is the mainstay of treatment. An important part of this is optimizing nutritional intake with evidence that this may positively affect survival and quality of life. Health care professionals (HCPs) play a pivotal role in nutritional management of people with MND (pwMND) but, to date, their views on the psychological barriers faced by pwMND have not been explored. Such an exploration may identify ways in which the delivery of nutritional care for pwMND can be optimized. METHODS: Five qualitative focus groups were carried out across the United Kingdom in June 2018 with 51 participants, including 47 HCPs involved with MND care and four service user representatives. Data were analysed through thematic analysis. RESULTS: Four overarching themes were identified: psychological adjustment and patient engagement; nutrition and the need for control; knowledge of nutrition and the complexity of MND; and the psychosocial nature of eating. CONCLUSIONS: The findings suggest that the nutritional management of pwMND should be mindful of factors such as the impact of distress at the time of diagnosis, the availability of clear information on nutrition and MND, as well as the importance of illness perceptions and coping strategies. Moreover, tailored psychological interventions should be considered to mitigate the impact on MND on the experience of eating. Statement of contribution What is already known on this subject? Since weight loss and reduced body mass index (BMI) have been identified as independent risk factors for prognosis and survival in motor neuron disease (MND), nutritional management represents an important component of the symptomatic care of people with MND (pwMND) aimed at prolonging survival and maintaining or improving quality of life. However, the current guidelines and quantitative and qualitative literature on the topic are mainly focused on issues around enteral feeding and gastrostomy insertion, and very little is currently known about potential psychological enablers or barriers to earlier nutritional management, especially from the perspectives of health care professionals (HCPs) involved in the delivery of nutritional care in pwMND. What does this study add? First qualitative investigation of enablers or barriers to nutritional care in pwMND from the perspective of HCPs. New insight into psychological factors (e.g., adjustment, avoidance, loss of control) in nutritional care for pwMND. Practical implications and novel clinical suggestions for HCPs involved in nutritional care of pwMND.