scholarly journals Co-Design of Social Impact Domains with the Huntington’s Disease Community

Disabilities ◽  
2021 ◽  
Vol 1 (2) ◽  
pp. 116-131
Author(s):  
Natasha Layton ◽  
Natasha Brusco ◽  
Tammy Gardner ◽  
Libby Callaway
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Design Process ◽  
Social Life ◽  
Social Inclusion ◽  
Social Impact ◽  
Service Providers ◽  
The Social

Background: For people living with or affected by Huntington’s Disease (HD) to experience a good quality of life, tailored support is required to meet physical, cognitive-behavioral, psychological, and social support needs. Substantial service and knowledge gaps regarding HD exist across support providers and service systems. Measuring unmet needs and what quality of life looks like is a fundamental step required to determine the social impact of service investment and provision. The objectives of this study were to validate and map a draft set of HD Social Impact Domains (HD-SID) against existing national and international outcome frameworks; and evaluate and finalize the HD-SID set using a co-design approach with people with lived experience of, and expertise in, HD. Methods: This research used a qualitative co-design process, with 39 participants across four stakeholder groups (people who were HD gene-positive, gene-negative family members, academics, peak organizations, and service providers) to: (i) map and verify the social life areas impacted by HD; (ii) undertake a rigorous three-phased, qualitative process to critically evaluate the draft HD-SID; and (iii) seek feedback on and endorsement of the HD-SID through this co-design process, with a final set of HD-SID identified. Results: Endorsed HD-SID comprised risks and safety (including housing stability, and economic sustainability) and social inclusion (including health and symptom management, physical wellbeing, emotional wellbeing, and building resilient relationships). Conclusions: Effective measurement of the impacts and outcomes for people with HD is informed by both extant measures and an understanding of the specific population needs. This qualitative co-design research demonstrates that HD-SID resonate with the HD community.

scholarly journals Management of Traumatic Ulcerations of Lips in a Case of Huntington’s Disease: A Novel Application of Essix Retainer

2021 ◽  
pp. 030157422110234
Author(s):  
Mohamed Iqbal J
Keyword(s):  
Quality Of Life ◽  
Characteristic Feature ◽  
Neurodegenerative Disease ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Complete Resolution ◽  
Psychiatric Symptoms

Huntington’s disease is a progressive neurodegenerative disease characterized by motor, cognitive, and psychiatric symptoms. Dystonia of muscles is a characteristic feature of this condition. A case of Huntington’s disease, with orofacial dystonia, leading to severe uncontrolled biting of the lips, was referred by the Department of Neurology. Deep traumatic ulcerations were found in both upper and lower lips. A simple Essix retainer was fabricated and inserted, which acted as a barrier for the teeth from injuring the lips. The ulcers showed complete resolution in 3 to 4 weeks. The vacuum-formed retainers resulted in a good fit and resisted removal by the uncontrolled contortions of the orofacial muscles. The Essix retainer can be effectively used in improving the quality of life of patients, with Huntington’s disease, having such dystonia-related injuries to lips.

scholarly journals Psychometric Properties and Validation of the Polish Version of the 12-Item World Health Organization Disability Assessment Schedule 2.0 in Patients with Huntington’s Disease

2021 ◽  
Vol 10 (5) ◽  
pp. 1053
Author(s):  
Agnieszka Ćwirlej-Sozańska ◽  
Bernard Sozański ◽  
Mateusz Kupczyk ◽  
Justyna Leszczak ◽  
Andrzej Kwolek ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Psychometric Properties ◽  
Huntington’S Disease ◽  
Scale Score ◽  
World Health ◽  
Disability Assessment ◽  
Whodas 2.0 ◽  
Score Reliability

Background: Huntington’s disease is a progressive neurodegenerative disorder that usually manifests in adulthood and is inherited in an autosomal dominant manner. The main aim of the study was to assess the psychometric properties of the 12-item WHO Disability Assessment Schedule (WHODAS) 2.0 in studying the level of disability in people with Huntington’s disease. Method: This is a cross-sectional study that covered 128 people with Huntington’s disease living in Poland. We examined scale score reliability, internal consistency, convergent validity, and known-group validity. The disability and quality of life of people with Huntington’s disease were also assessed. Results: The scale score reliability of the entire tool for the research group was high. The Cronbach’s α test result for the whole scale was 0.97. Cronbach’s α for individual domains ranged from 0.95 to 0.79. Time consistency for the overall result was 0.99 and for particular domains ranged from 0.91 to 0.99, which confirmed that the scale was consistent over time. All of the 12-item WHODAS 2.0 domains negatively correlated with all of the Huntington Quality of Life Instrument (H-QoL-I) domains. All correlation coefficients were statistically significant at the level of p < 0.001. The results obtained in the linear regression model showed that with each subsequent point of decrease in BMI the level of disability increases by an average of 0.83 points on the 12-item WHODAS 2.0 scale. With each subsequent year of the disease, the level of disability increases by an average of 1.39 points. Conclusions: This is the first study assessing disability by means of the WHODAS 2.0 in the HD patient population in Poland, and it is also one of the few studies evaluating the validity of the WHODAS 2.0 scale in assessing the disability of people with HD in accordance with the recommendations of DSM-5 (R). We have confirmed that the 12-item WHODAS 2.0 is an effective tool for assessing disability and changes in functioning among people with Huntington’s disease.

Validation of the first quality-of-life measurement for patients with Huntington’s disease

2012 ◽  
Vol 27 (4) ◽  
pp. 208-214 ◽  
Author(s):  
Emilie Clay ◽  
Annunziata De Nicola ◽  
Julie Dorey ◽  
Ferdinando Squitieri ◽  
Samuel Aballéa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Life Measurement ◽  
Quality Of Life Measurement

Health-related quality of life in Huntington's disease: A comparison of two generic instruments, SF-36 and SIP

2004 ◽  
Vol 19 (11) ◽  
pp. 1341-1348 ◽  
Author(s):  
Aileen K. Ho ◽  
Anna O.G. Robbins ◽  
Stephen J. Walters ◽  
Stephen Kaptoge ◽  
Barbara J. Sahakian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related

Towards a Universal Social Impact Metric for Engineered Products That Alleviate Poverty

2017 ◽  
Author(s):  
Phillip D. Stevenson ◽  
Christopher A. Mattson ◽  
Kenneth M. Bryden ◽  
Nordica A. MacCarty
Keyword(s):  
Quality Of Life ◽  
Developing Countries ◽  
Social Impact ◽  
Multidimensional Poverty ◽  
Social Impacts ◽  
Five Dimensions ◽  
Multidimensional Poverty Index ◽  
The Social ◽  
The Impact

More than ever before, engineers are creating products for developing countries. One of the purposes of these products is to improve the consumer’s quality of life. Currently, there is no established method of measuring the social impact of these types of products. As a result, engineers have used their own metrics to assess their product’s impact, if at all. Some of the common metrics used include products sold and revenue, which measure the financial success of a product without recognizing the social successes or failures it might have. In this paper we introduce a potential metric, the Product Impact Metric (PIM), which quantifies the impact a product has on impoverished individuals — especially those living in developing countries. It measures social impact broadly in five dimensions: health, education, standard of living, employment quality, and security. The PIM is inspired by the Multidimensional Poverty Index (MPI) created by the United Nations Development Programme. The MPI measures how the depth of poverty within a nation changes year after year, and the PIM measures how an individual’s quality of life changes after being affected by an engineered product. The Product Impact Metric can be used to predict social impacts (using personas that represent real individuals) or measure social impacts (using specific data from products introduced into the market).

scholarly journals Therapeutic management of movement disorders present in Huntington’s Disease: a literature review

2021 ◽  
Author(s):  
Camila Angelo Vidal de Figueiredo ◽  
Kaline dos Santos Kishishita Castro ◽  
Sílvia Raimunda Costa Leite
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Adverse Effects ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Psychiatric Symptoms ◽  
Therapeutic Management ◽  
Abnormal Gait ◽  
Botulinum Toxin Injections

Background: Huntington’s Disease (HD) is a hereditary neurodegenerative genetic disease with motor, cognitive and behavioral repercussions that interferes in several areas of the patients’ lives. Therefore, to increase the quality of life for patients the therapeutic management of symptoms is necessary. Objective: to elucidate the main forms of treatment that reduces motor disorders present in HD. Methods: an integrative literature review was conducted using scientific articles published between 2016-2020 about this topic found in Pubmed and Google Scholar databases. Results: the chorea treatment in HD can be done using Tetrabenazine, deutetrabenazine or antipsychotics. During a study by the Huntington Study Group (HSG), tetrabenazine proved its efficacy, however, due to several adverse effects, its use was reduced. Thus, deutetrabenazine was created, which consists in a tetrabenazine deuterated version, with a longer half- life and less adverse effects. Studies by the HSG found that besides reducing chorea, it also improves motor function in general in patients. Antipsychotics are used when the patient has behavioral and psychiatric symptoms that prevent him from using the other drugs. The dystonia treatment involves physiotherapy and botulinum toxin injections, which are also used in the bruxism therapy, along with mouth protectors. Abnormal gait and balance problems can be reduced with psychomotor rehabilitation, physiotherapy, and using a walker. Conclusion: the control of HD motor symptoms is an important way to increase patients’ quality of life. Therefore, more studies are necessary to expand the effective therapeutic options.

J09 When do voice changes affect quality of life in Huntington's disease?

2010 ◽  
Vol 81 (Suppl 1) ◽  
pp. A42.3-A42
Author(s):  
A K Ho ◽  
J Cull ◽  
K Drake ◽  
R A Barker ◽  
S J Tabrizi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Voice Changes

I24 Quality of life of cypriot patients suffering with huntington’s disease: Abstract I24 Table 1

2016 ◽  
Vol 87 (Suppl 1) ◽  
pp. A67.1-A67
Author(s):  
Yiolanda Christou ◽  
Christiana A Demetriou ◽  
Eleni Varda ◽  
Alexandros Heraclides ◽  
Eleni Zamba-Papanicolaou
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Huntington’S Disease

Evaluation of Alzheimer's Australia Vic Memory Lane Cafés

2010 ◽  
Vol 23 (2) ◽  
pp. 246-255 ◽  
Author(s):  
Briony Dow ◽  
Betty Haralambous ◽  
Courtney Hempton ◽  
Susan Hunt ◽  
Diane Calleja
Keyword(s):  
Quality Of Life ◽  
Support Groups ◽  
Social Inclusion ◽  
Service Providers ◽  
Family Members ◽  
Memory Loss ◽  
Well Being ◽  
Human Research Ethics ◽  
People With Dementia

ABSTRACTBackground: This paper describes the evaluation of the Memory Lane Café service in Victoria, Australia. The Alzheimer's Australia Vic Memory Lane Café model aims to provide a social and educational service to people living with dementia and their carers, family members or friends. Dementia is a serious health issue in Australia, with prevalence estimated at 6.5% of people over 65 years of age. Living with dementia has significant social and psychological ramifications, often negatively affecting quality of life. Social support groups can improve quality of life for people living with dementia.Methods: The evaluation included focus groups and surveys of people with dementia and their carers, staff consultation, service provider interviews, and researcher observation. The Melbourne Health Mental Health Human Research Ethics Committee approved the project. Participants included people with dementia (aged 60 to 93 years, previously enrolled in the Alzheimer's Australia Vic's six-week Living With Memory Loss Program), their carers, friends and/or family members, staff working in the Cafés, and service providers with links to the Cafés.Results: This evaluation found that Memory Lane Cafés promote social inclusion, prevent isolation, and improve the social and emotional well-being of attendees. However, Cafés did not meet the needs of all potential attendees.Conclusions: The evaluation recommended that existing Café services be continued and possibilities for extending the Cafés be explored. Based on evaluation outcomes, the Department of Health Victoria is funding four additional pilot programs in café style support services.

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