Web-Based Intervention Using Self-Compassionate Writing to Induce Positive Mood in Family Caregivers of Older Adults: Quantitative Study.

Background: Caregiver burden can impact the mental health of family caregivers, but self-compassion may help reduce this impact. Brief self-compassion interventions have been shown to be useful but have not been tested in family caregivers of older adults.

Objective: This study aimed to test the effects of a brief self-compassion intervention and its components (self-kindness, common humanity, and mindfulness) on mental well-being and mood when reflecting on difficult family caregiving experiences.

Rumination in dementia and its relationship with depression, anxiety, and attentional biases.

Rumination (self-referential and repetitive thinking), attentional biases (AB), and impaired cognitive control are theorized as being integral factors in depression and anxiety. Yet, research examining the relationship between rumination, mood, and AB for populations with reduced cognitive control, e.g.

Sexual activity (re-)engagement following spinal cord injury: Identifying behavior change targets for intervention development.

Objectives: This study used the behavior change wheel to identify the priority behavioral factors for a tailored intervention to support (re-)engagement in sexual activity following a spinal cord injury (SCI).

Research Method/design: Forty-eight semistructured interviews were conducted with participants from three outpatient/carer/clinician populations in the United Kingdom: people living with SCI, their partners/spouses, and healthcare professionals working in SCI rehabilitation. To identify potential strategies to facilitate (re-)engagement in sexual activity, the behavior change wheel (BCW) and behavior change technique taxonomy Version 1 were applied to code behavior change techniques (BCTs) present in interview transcripts.

Psychotherapy and professional psychological support in multiple sclerosis: Uncovering patients' patterns of access and preferences.

Background: Whilst there is research on psychotherapy and professional psychological support (PPS) in people with Multiple Sclerosis (pwMS) in discrete randomised controlled trials, little is known about the different types of PPS pwMS access throughout the trajectory of their illness and their perceived helpfulness. Additionally, research on what pwMS's preferences are with regard to PPS is lacking.

Method: In an online cross-sectional survey study with 565 pwMS, we asked about the types of PPS pwMS had accessed and their preferences.

Sexual function and sexual satisfaction following spinal cord injury: an interpretative phenomenological analysis of partner experiences.

Purpose: This study explored how partners/spouses of people with Spinal Cord Injury (SCI) experienced intimacy, sexual function, and sexual satisfaction post-SCI.

Materials And Methods: Qualitative, semi-structured interviews were conducted with the partners/spouses of people with SCI living in the community in the United Kingdom. Twelve participants (7 females; 5 males) were recruited using purposive sampling.

Internet-facilitated interventions for informal caregivers of patients with neurodegenerative disorders: Systematic review and meta-analysis.

Objective: This systematic review explored the effectiveness of internet-delivered interventions in improving psychological outcomes of informal caregivers for neurodegenerative-disorder (ND) patients.

Methods: We searched seven databases for English-language papers published from 1999 to May 2021. Study-eligibility required that interventions used a minimum 50% internet-facilitation, targeting unpaid, adult informal caregivers of community-based ND-patients.

Supporting Sexual Functioning and Satisfaction During Rehabilitation after Spinal Cord Injury: Barriers and Facilitators Identified by Healthcare Professionals.

Objective: To explore healthcare professionals' perspectives on the barriers and facilitators impacting provision of support for sexual functioning/satisfaction during spinal cord injury rehabilitation.

Design: Qualitative, semi-structured interview design.

Methods: Sixteen healthcare professionals working in spinal cord injury rehabilitation settings were recruited (14 females, 2 males).

Uncovering patterns of real-world psychological support seeking and the patient experience in multiple sclerosis.

Background: With the rate of psychological disorder being disproportionately high in people with Multiple Sclerosis (pwMS), it is important that they receive adequate psychological support. While there are informal and more formal sources of psychological support for pwMS available, there is a paucity of research in understanding the actual pattern of support that pwMS interact with in a real-world context. We aimed to understand this by examining the pattern of access across different sources of psychological support in the same large cohort of pwMS, and their experiences of support received.

"Data is the new oil": citizen science and informed consent in an era of researchers handling of an economically valuable resource.

As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention.

The COVID-19 Pandemic Experience in Multiple Sclerosis: The Good, the Bad and the Neutral.

Introduction: While the current COVID-19 pandemic has affected the lives of many, there is a paucity of information on the impact on people with multiple sclerosis (MS). This study sought to gain insight into the impact of the current situation on people with MS and the factors that influence this.

Methods: 324 MS patients participated in this online cross-sectional survey during the COVID-19 lockdown period.

An International Validation of a Clinical Tool to Assess Carers' Quality of Life in Huntington's Disease.

Family carers of individuals living with Huntington's disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life (QoL) for this group. The Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) was expanded ( = 47) and then administered to an international sample of 1716 partners and family carers from 13 countries.

Meaningful and Measurable Health Domains in Huntington's Disease: Large-Scale Validation of the Huntington's Disease Health-Related Quality of Life Questionnaire Across Severity Stages.

Background: Although health-related quality of life is key for patients with long-term neurodegenerative conditions, measuring this is less straightforward and complex in Huntington's disease (HD).

Objectives: To refine and validate a fully patient-derived instrument, the Huntington's Disease health-related Quality of Life questionnaire (HDQoL), and to elucidate health domains that are meaningful to patients' lived experience.

Methods: Five-hundred forty-one participants, from premanifest to end-stage disease, completed the HDQoL, together with generic quality-of-life measures and in-person motor, cognitive, and behavioral assessments.

Cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in progressive neurodegenerative conditions: A scoping review.

Background: Despite its potentially significant impact, cognitive disability may be overlooked in a number of progressive neurodegenerative conditions, as other difficulties dominate the clinical picture.

Objective: We examined the extent, nature and range of the research evidence relating to cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in Parkinsonian disorders, multiple sclerosis (MS), frontotemporal dementias (FTD), motor neuron disease and Huntington's disease.

Methods: Scoping review based on searches of MEDLINE and CINAHL up to 15 March 2016.

Rating Scales and Performance-based Measures for Assessment of Functional Ability in Huntington's Disease: Critique and Recommendations.

Limitation of functional ability is a major feature of Huntington's disease (HD). The International Parkinson and Movement Disorder Society (MDS) commissioned the appraisal of the use and clinimetric properties of clinical measures of functional ability that have been applied in HD studies and trials to date, to make recommendations regarding their use based on standardized criteria. After a systematic literature search, we included a total of 29 clinical measures grouped into two categories: (1) performance-based measures (e.

Quality of Life in Huntington's Disease: Critique and Recommendations for Measures Assessing Patient Health-Related Quality of Life and Caregiver Quality of Life.

The compromise of quality of life in Huntington's disease is a major issue, both for individuals with the disease as well as for their caregivers. The International Parkinson and Movement Disorder Society commissioned a review of the use and clinimetric validation status of measures used in Huntington's disease to assess aspects related with quality of life and to make recommendations on their use following standardized criteria. We included both patient-centered measures (patient health-related quality-of-life measures) and caregiver-centered measures (caregiver quality-of-life measures).

The long-term safety and efficacy of bilateral transplantation of human fetal striatal tissue in patients with mild to moderate Huntington's disease.

Huntington's disease (HD) is a fatal autosomal dominant neurodegenerative disease involving progressive motor, cognitive and behavioural decline, leading to death approximately 20 years after motor onset. The disease is characterised pathologically by an early and progressive striatal neuronal cell loss and atrophy, which has provided the rationale for first clinical trials of neural repair using fetal striatal cell transplantation. Between 2000 and 2003, the 'NEST-UK' consortium carried out bilateral striatal transplants of human fetal striatal tissue in five HD patients.

Health-related quality of life in Huntington's disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington's disease health-related quality of life questionnaire (HDQoL).

Huntington's disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. Proxy evaluation is relevant for HD as its manifestation might limit the ability of persons to report their health-related quality of life (HrQoL). This study explored patient-proxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings.

Assessment of cognitive symptoms in prodromal and early huntington disease.

The Functional Rating Scale Taskforce for pre-Huntington Disease (FuRST-pHD) is a multinational, multidisciplinary initiative with the goal of developing a data-driven, comprehensive, psychometrically sound, rating scale for assessing symptoms and functional ability in prodromal and early Huntington disease (HD) gene expansion carriers. The process involves input from numerous sources to identify relevant symptom domains, including HD individuals, caregivers, and experts from a variety of fields, as well as knowledge gained from the analysis of data from ongoing large-scale studies in HD using existing clinical scales. This is an iterative process in which an ongoing series of field tests in prodromal (prHD) and early HD individuals provides the team with data on which to make decisions regarding which questions should undergo further development or testing and which should be excluded.

Assessment of Day-to-Day Functioning in Prodromal and Early Huntington Disease.

The Functional Rating Scale Taskforce for pre-Huntington Disease (FuRST-pHD) is a multinational, multidisciplinary initiative with the goal of developing a data-driven, comprehensive, psychometrically sound, rating scale for assessing symptoms and functional ability in prodromal and early Huntington disease (HD) gene expansion carriers. The process involves input from numerous sources to identify relevant symptom domains, including HD individuals, caregivers, and experts from a variety of fields, as well as knowledge gained from the analysis of data from ongoing large-scale studies in HD using existing clinical scales. This is an iterative process in which an ongoing series of field tests in prodromal (prHD) and early HD individuals provides the team with data on which to make decisions regarding which questions should undergo further development or testing and which should be excluded.

Assessing behavioural manifestations prior to clinical diagnosis of huntington disease: "anger and irritability" and "obsessions and compulsions".

The Functional Rating Scale Taskforce for pre-Huntington Disease (FuRST-pHD) is a multinational, multidisciplinary initiative with the goal of developing a data-driven, comprehensive, psychometrically sound, rating scale for assessing symptoms and functional ability in prodromal and early Huntington disease (HD) gene expansion carriers. The process involves input from numerous sources to identify relevant symptom domains, including HD individuals, caregivers, and experts from a variety of fields, as well as knowledge gained from the analysis of data from ongoing large-scale studies in HD using existing clinical scales. This is an iterative process in which an ongoing series of field tests in prodromal (prHD) and early HD individuals provides the team with data on which to make decisions regarding which questions should undergo further development or testing and which should be excluded.

Assessment of motor symptoms and functional impact in prodromal and early huntington disease.

The Functional Rating Scale Taskforce for pre-Huntington Disease (FuRST-pHD) is a multinational, multidisciplinary initiative with the goal of developing a data-driven, comprehensive, psychometrically sound, rating scale for assessing symptoms and functional ability in prodromal and early Huntington disease (HD) gene expansion carriers. The process involves input from numerous sources to identify relevant symptom domains, including HD individuals, caregivers, and experts from a variety of fields, as well as knowledge gained from the analysis of data from ongoing large-scale studies in HD using existing clinical scales. This is an iterative process in which an ongoing series of field tests in prodromal (prHD) and early HD individuals provides the team with data on which to make decisions regarding which questions should undergo further development or testing and which should be excluded.

Assessment of depression, anxiety and apathy in prodromal and early huntington disease.

The Functional Rating Scale Taskforce for pre-Huntington Disease (FuRST-pHD) is a multinational, multidisciplinary initiative with the goal of developing a data-driven, comprehensive, psychometrically sound, rating scale for assessing symptoms and functional ability in prodromal and early Huntington disease (HD) gene expansion carriers. The process involves input from numerous sources to identify relevant symptom domains, including HD individuals, caregivers, and experts from a variety of fields, as well as knowledge gained from the analysis of data from ongoing large-scale studies in HD using existing clinical scales. This is an iterative process in which an ongoing series of field tests in prodromal (prHD) and early HD individuals provides the team with data on which to make decisions regarding which questions should undergo further development or testing and which should be excluded.

An item response analysis of the motor and behavioral subscales of the unified Huntington's disease rating scale in huntington disease gene expansion carriers.

Although the Unified Huntington's Disease Rating Scale (UHDRS) is widely used in the assessment of Huntington disease (HD), the ability of individual items to discriminate individual differences in motor or behavioral manifestations has not been extensively studied in HD gene expansion carriers without a motor-defined clinical diagnosis (ie, prodromal-HD or prHD). To elucidate the relationship between scores on individual motor and behavioral UHDRS items and total score for each subscale, a nonparametric item response analysis was performed on retrospective data from 2 multicenter longitudinal studies. Motor and behavioral assessments were supplied for 737 prHD individuals with data from 2114 visits (PREDICT-HD) and 686 HD individuals with data from 1482 visits (REGISTRY).

Observing Huntington's Disease: the European Huntington's Disease Network's REGISTRY.

Background: Huntington's disease (HD) is a rare triplet repeat (CAG) disorder. Advanced, multi-centre, multi-national research frameworks are needed to study simultaneously multiple complementary aspects of HD. This includes the natural history of HD, its management and the collection of clinical information and biosamples for research.

Cognitive follow up of a small cohort of Huntington's disease patients over a 5 year period.

A small group of patients with manifest Huntington's disease (HD) were followed longitudinally to assess cognitive decline in relation to time from disease diagnosis. This article looks at performance on a range of computerised and pencil and paper cognitive tasks in patients 5 years post diagnosis, who were assessed annually for a 5 year follow up period. The almost universal cognitive decline reported in other longitudinal studies of HD was not replicated in this study.