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.

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Increased Risk of Graves´ophthalmopathy in Patients With Increasing TRAb After Radioiodine Treatment and the Impact of CTLA4 on TRAb Titres

10.21203/rs.3.rs-883457/v1 ◽

2021 ◽

Author(s):

Bushra Shahida ◽

Kleoniki Tsoumani ◽

Tereza Planck ◽

Vijayachitra Modhukur ◽

Pernilla Asp ◽

...

Keyword(s):

Previous Treatment ◽

University Hospital ◽

P Value ◽

Graves Ophthalmopathy ◽

Increased Risk ◽

Orbital Tissue ◽

One Year ◽

The Impact ◽

The Relationship

Abstract Introduction. Treatment of Graves´ disease (GD) with radioiodine increases the risk of developing Graves´ ophthalmopathy (GO) but the link between thyroid and orbital tissue remains undefined.The aim was to investigate the relationship between GO and TRAb after treatment with radioiodine and to define the impact of risk genes.Methods. GD patients without ophthalmopathy or previous treatment with radioiodine were prospectively included at treatment with radioiodine for hyperthyroidism. A follow-up was performed one year later for registration of GO development. The study was performed at a University Hospital Clinic; referral center of all patients treated with radioiodine in the south of Sweden. The main outcome measures were development of TRAb, anti-TPO, anti-TG after three months and GO after 12 months and relationship to the genetic background (HLA, CTLA-4, CYR61).Results. Three months of radioiodine TRAb increased in two thirds of patients (p<0.0005) but not in the other third. Anti-TPO was associated with TRAb (R=0.362, p <0.0001) but not anti-TG. At follow-up one year later (n=204) 32 patients developed GO with a proportion of 70% in the group increasing in TRAb and 30 % in the group with unchanged or lower TRAb (p-value <0.0005). Patients with GO had higher levels of TRAb than patients without GO. CTLA-4 (rs231775 SNP) was significantly (p<0.005) associated with TRAb levels above the median three months after radioiodine.Conclusions. The increase in TRAb after treatment with radioiodine is associated with GO and a genetic variation in CTLA-4 is associated with higher levels of TRAb.

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Riluzole in Huntington's disease (HD): an open label study with one year follow up

Journal of Neurology ◽

10.1007/s004150170071 ◽

2001 ◽

Vol 248 (10) ◽

pp. 866-869 ◽

Cited By ~ 46

Author(s):

Klaus Seppi ◽

Joerg Mueller ◽

Thomas Bodner ◽

Elisabeth Brandauer ◽

Thomas Benke ◽

...

Keyword(s):

Huntington's Disease ◽

Huntington’S Disease ◽

Open Label ◽

Open Label Study ◽

Label Study ◽

One Year

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The Effects of Noncompliance to Prolia (Denosumab) on the Changes in Bone Mineral Density: A Retrospective Review

Journal of Osteoporosis ◽

10.1155/2016/7903128 ◽

2016 ◽

Vol 2016 ◽

pp. 1-5 ◽

Cited By ~ 1

Author(s):

Matthew Wong-Pack ◽

Aashish Kalani ◽

Jacob Hordyk ◽

George Ioannidis ◽

Robert Bensen ◽

...

Keyword(s):

Bone Mineral Density ◽

Bone Mineral ◽

Retrospective Review ◽

Mineral Density ◽

Eligibility Criteria ◽

Multivariable Regression ◽

One Year ◽

The Impact ◽

The Relationship

Although denosumab (Prolia) has been shown to be a safe and efficacious therapy for osteoporotic patients in numerous clinical trials, few studies have determined its effectiveness in real world clinical practice. A retrospective review of patients prescribed Prolia assessing the impact that noncompliance from the regular dosing regimen of six months for denosumab has on bone mineral density (BMD) was performed. 924 patient records were reviewed between August 2012 and September 2013 with 436 patients meeting the eligibility criteria. Patients were divided into three groups: subsequent injection of denosumab (1) less than five months, (2) between five and seven months, and (3) more than seven months after their initial subcutaneous injection. A multivariable regression analysis was conducted comparing the differences among the three prespecified groups in BMD change (g/cm2) after one year of denosumab therapy at both the lumbar spine (LS) and femoral neck (FN). The differences in LS and FN BMD have shown that the relationship between the timing of drug administration in these three groups and change in BMD over 1 year was not clinically or statistically significant (p>0.05). A follow-up study with a larger sample size and longer follow-up duration is required to further characterize this relationship.

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F77 A pilot evaluation of mindfulness-based cognitive therapy for pre-manifest people with the huntington’s disease gene–findings at one year

10.1136/jnnp-2018-ehdn.174 ◽

2018 ◽

Author(s):

Jane Simpson ◽

Alistair Smith ◽

Fiona Eccles ◽

Siofra Peeren ◽

Dawn Rogers ◽

...

Keyword(s):

Huntington's Disease ◽

Huntington’S Disease ◽

Cognitive Therapy ◽

Disease Gene ◽

One Year

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The relationship with the partner after predictive DNA-testing for Huntington's disease: A five-year follow-up study

PsycEXTRA Dataset ◽

10.1037/e524332011-016 ◽

2004 ◽

Author(s):

M. Decruyenaere ◽

G. Evers-Kiebooms ◽

T. Cloostermans ◽

A. Boogaerts ◽

K. Demyttenaere ◽

...

Keyword(s):

Huntington's Disease ◽

Huntington’S Disease ◽

Dna Testing ◽

Follow Up Study ◽

The Relationship

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Ventricular arrhythmias in patients with functional mitral regurgitation and implantable cardiac devices: implications of mitral valve repair with Mitraclip

European Heart Journal ◽

10.1093/ehjci/ehaa946.2636 ◽

2020 ◽

Vol 41 (Supplement_2) ◽

Author(s):

T Benito Gonzalez ◽

X Freixa ◽

C Godino ◽

M Taramasso ◽

R Estevez-Loureiro ◽

...

Keyword(s):

Mitral Valve ◽

Mitral Regurgitation ◽

Mitral Valve Repair ◽

Left Ventricular ◽

Left Ventricular Ejection ◽

Functional Mitral Regurgitation ◽

Valve Repair ◽

One Year ◽

The Impact

Abstract Background Limited information has been reported regarding the impact of percutaneous mitral valve repair (PMVR) on ventricular arrhythmic (VA) burden. The aim of this study was to address the incidence of VA and appropriate antitachycardia implantable cardiac defibrillator (ICD) therapies before and after PMVR. Methods We retrospectively analyzed all consecutive patients with heart failure with reduce left ventricular ejection fraction, functional mitral regurgitation grade 3+ or 4+ and an active ICD or cardiac resynchronizer who underwent PMVR in any of the eleven recruiting centers. Only patients with complete available device VA monitoring from one-year before to one year after PMVR were included. Baseline clinical and echocardiographic characteristics were collected before PMVR and at 12-months follow-up. Results 93 patients (68.2±10.9 years old, male 88.2%) were enrolled. PMVR was successfully performed in all patients and device success at discharge was 91.4%. At 12-months follow-up, we observed a significant reduction in mitral regurgitation severity, NT-proBNP and prevalence of severe pulmonary hypertension and severe kidney disease. Patients also referred a significant improvement in NYHA functional class and showed a non-significant trend to reserve left ventricular remodeling. After PMVR a significant decrease in the incidence of non-sustained ventricular tachycardia (VT) (5.0–17.8 vs 2.7–13.5, p=0.002), sustained VT or ventricular fibrillation (0.9–2.5 vs 0.5–2.9, p=0.012) and ICD antitachycardia therapies (2.5–12.0 vs 0.9–5.0, p=0.033) were observed. Conclusion PMVR was related to a reduction in arrhythmic burden and ICD therapies in our cohort. Proportion of patients who presented ven Funding Acknowledgement Type of funding source: None

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Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic

Journal of Child Neurology ◽

10.1177/08830738211001209 ◽

2021 ◽

pp. 088307382110012

Author(s):

Michelle Kowanda ◽

Lindsey Cartner ◽

Catherine Kentros ◽

Alexa R. Geltzeiler ◽

Kaitlyn E. Singer ◽

...

Keyword(s):

Caregiver Burden ◽

Educational Programs ◽

Medical Systems ◽

Medical Needs ◽

Neurodevelopmental Disabilities ◽

Delivery Of Services ◽

The Impact ◽

The Relationship

Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers’ reported impact on their dependent’s services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported “feeling stressed but able to deal with problems as they arise,” and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.

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Abnormal Spinal Cord Myelination due to Oligodendrocyte Dysfunction in a Model of Huntington’s Disease

Journal of Huntington s Disease ◽

10.3233/jhd-210495 ◽

2021 ◽

pp. 1-8

Author(s):

Costanza Ferrari Bardile ◽

Harwin Sidik ◽

Reynard Quek ◽

Nur Amirah Binte Mohammad Yusof ◽

Marta Garcia-Miralles ◽

...

Keyword(s):

Spinal Cord ◽

Huntington's Disease ◽

Huntington’S Disease ◽

Oligodendrocyte Progenitor Cells ◽

Wild Type ◽

Specific Expression ◽

Relative Contribution ◽

Related Proteins ◽

The Impact ◽

Cervical Area

Background: The relative contribution of grey matter (GM) and white matter (WM) degeneration to the progressive brain atrophy in Huntington’s disease (HD) has been well studied. The pathology of the spinal cord in HD is comparatively less well documented. Objective: We aim to characterize spinal cord WM abnormalities in a mouse model of HD and evaluate whether selective removal of mutant huntingtin (mHTT) from oligodendroglia rescues these deficits. Methods: Histological assessments were used to determine the area of GM and WM in the spinal cord of 12-month-old BACHD mice, while electron microscopy was used to analyze myelin fibers in the cervical area of the spinal cord. To investigate the impact of inactivation of mHTT in oligodendroglia on these measures, we used the previously described BACHDxNG2Cre mouse line where mHTT is specifically reduced in oligodendrocyte progenitor cells. Results: We show that spinal GM and WM areas are significantly atrophied in HD mice compared to wild-type controls. We further demonstrate that specific reduction of mHTT in oligodendroglial cells rescues the atrophy of spinal cord WM, but not GM, observed in HD mice. Inactivation of mHTT in oligodendroglia had no effect on the density of oligodendroglial cells but enhanced the expression of myelin-related proteins in the spinal cord. Conclusion: Our findings demonstrate that the myelination abnormalities observed in brain WM structures in HD extend to the spinal cord and suggest that specific expression of mHTT in oligodendrocytes contributes to such abnormalities.

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