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  • 1
    Online Resource
    Online Resource
    Management of speech, language and communication difficulties in Huntington’s disease
    Future Medicine Ltd ; 2012
    In:  Neurodegenerative Disease Management Vol. 2, No. 1 ( 2012-02), p. 67-77
    Details
    In: Neurodegenerative Disease Management, Future Medicine Ltd, Vol. 2, No. 1 ( 2012-02), p. 67-77
    Abstract: SUMMARY Speech and language therapists play an important role in the management of communication difficulties in Huntington’s disease (HD). As the disease progresses the effectiveness of communication becomes increasingly compromised by a combination of changes in motor function, diminishing cognitive linguistic abilities and neuropsychiatric changes, such as depression and apathy. The complexities and challenges presented by communication breakdown in HD require comprehensive assessment and interventions that are responsive to the changing motor, cognitive and emotional needs of the individual. The European Huntington’s Disease Network Standards of Care Speech and Language Therapy Working Group has brought together expert speech and language therapists from across Europe to produce guidelines to improve the management of communication disorders for individuals with HD. The guidelines were developed with the aim of promoting timely and appropriate assessment and focused management throughout all stages of the disease. Literature was thoroughly searched and evaluated in an attempt to ensure that the guidelines are based on available evidence. However as there is a paucity of good-quality, high-level evidence the guidance is based predominantly on expert opinion and consensus. The provision of care varies widely between countries in Europe and the implementation of these guidelines aims to help improve the quality of care delivered to individuals with HD.
    Type of Medium: Online Resource
    ISSN: 1758-2024 , 1758-2032
    URL: Article
    DOI: 10.2217/nmt.11.78
    Language: English
    Publisher: Future Medicine Ltd
    Publication Date: 2012
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  • 2
    Online Resource
    Online Resource
    Study Protocol for the Development of a European eHealth Platform to Improve Quality of Life in Individuals With Huntington's Disease and Their Partners (HD-eHelp Study): A User-Centered Design Approach
    Frontiers Media SA ; 2021
    In:  Frontiers in Neurology Vol. 12 ( 2021-9-13)
    Details
    In: Frontiers in Neurology, Frontiers Media SA, Vol. 12 ( 2021-9-13)
    Abstract: Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that affects the quality of life (QoL) of HD gene expansion carriers (HDGECs) and their partners. Although HD expertise centers have been emerging across Europe, there are still some important barriers to care provision for those affected by this rare disease, including transportation costs, geographic distance of centers, and availability/accessibility of these services in general. eHealth seems promising in overcoming these barriers, yet research on eHealth in HD is limited and fails to use telehealth services specifically designed to fit the perspectives and expectations of HDGECs and their families. In the European HD-eHelp study, we aim to capture the needs and wishes of HDGECs, partners of HDGECs, and health care providers (HCPs) in order to develop a multinational eHealth platform targeting QoL of both HDGECs and partners at home. Methods: We will employ a participatory user-centered design (UCD) approach, which focusses on an in-depth understanding of the end-users' needs and their contexts. Premanifest and manifest adult HDGECs ( n = 76), partners of HDGECs ( n = 76), and HCPs ( n = 76) will be involved as end-users in all three phases of the research and design process: (1) Exploration and mapping of the end-users' needs, experiences and wishes; (2) Development of concepts in collaboration with end-users to ensure desirability; (3) Detailing of final prototype with quick review rounds by end-users to create a positive user-experience. This study will be conducted in the Netherlands, Germany, Czech Republic, Italy, and Ireland to develop and test a multilingual platform that is suitable in different healthcare systems and cultural contexts. Discussion: Following the principles of UCD, an innovative European eHealth platform will be developed that addresses the needs and wishes of HDGECs, partners and HCPs. This allows for high-quality, tailored care to be moved partially into the participants' home, thereby circumventing some barriers in current HD care provision. By actively involving end-users in all design decisions, the platform will be tailored to the end-users' unique requirements, which can be considered pivotal in eHealth services for a disease as complex and rare as HD.
    Type of Medium: Online Resource
    ISSN: 1664-2295
    URL: Article
    DOI: 10.3389/fneur.2021.719460
    Language: Unknown
    Publisher: Frontiers Media SA
    Publication Date: 2021
    detail.hit.zdb_id: 2564214-5
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  • 3
    Online Resource
    Online Resource
    Quality of life, health-related quality of life, and associated factors in Huntington’s disease: a systematic review
    Springer Science and Business Media LLC ; 2023
    In:  Journal of Neurology Vol. 270, No. 5 ( 2023-05), p. 2416-2437
    Details
    In: Journal of Neurology, Springer Science and Business Media LLC, Vol. 270, No. 5 ( 2023-05), p. 2416-2437
    Abstract: Huntington’s disease (HD) is a genetic, neurodegenerative disease. Due to the progressive nature of HD and the absence of a cure, (health-related) quality of life ((HR)QoL) is an important topic. Several studies have investigated (HR)QoL in HD, yet a clear synthesis of the existing literature is lacking to date. We performed a systematic review on self-reported (HR)QoL, and factors and intervention effects associated with (HR)QoL in premanifest and manifest HD gene expansion carriers (pHDGECs and mHDGECs, respectively). Methods PubMed, EMBASE, Web of Science, and PsycINFO were searched systematically from September 17th, 2021, up to August 11th, 2022. Methodological and conceptual quality of the included studies was assessed with two appraisal tools. Results 30 out of 70 eligible articles were included. mHDGECs experienced lower (HR)QoL compared to pHDGECs and controls, whereas mixed findings were reported when compared to other neurological diseases. Several factors were associated with (HR)QoL that might contribute to lower (HR)QoL in mHDGECs, including depressive symptoms, physical and psychological symptoms, lower functional capacity, lower support, and unmet needs. Multidisciplinary rehabilitation programs and a respiratory muscle training were beneficial for (HR)QoL in mHDGECs. Discussion (HR)QoL is experienced differently across the course of the disease. Although (HR)QoL is key for understanding the impact of HD and the effect of symptomatic treatment, there is a need to improve the methodological and conceptual shortcomings that were found in most studies, especially regarding the conceptual clarity when reporting on QoL and HRQoL. Suggestions for strengthening these shortcomings are provided in this review.
    Type of Medium: Online Resource
    ISSN: 0340-5354 , 1432-1459
    URL: Article
    DOI: 10.1007/s00415-022-11551-8
    RVK:
    XA 10000
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 1421299-7
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  • 4
    Online Resource
    Online Resource
    H1 Dysphagia in huntington’s disease: symptoms and a patient perspective
    BMJ ; 2016
    In:  Journal of Neurology, Neurosurgery & Psychiatry Vol. 87, No. Suppl 1 ( 2016-09), p. A56.4-A57
    Details
    In: Journal of Neurology, Neurosurgery & Psychiatry, BMJ, Vol. 87, No. Suppl 1 ( 2016-09), p. A56.4-A57
    Type of Medium: Online Resource
    ISSN: 0022-3050 , 1468-330X
    URL: Article
    DOI: 10.1136/jnnp-2016-314597.159
    RVK:
    XA 10000
    Language: English
    Publisher: BMJ
    Publication Date: 2016
    detail.hit.zdb_id: 1480429-3
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  • 5
    Online Resource
    Online Resource
    The Huntington's disease dysphagia scale
    Wiley ; 2014
    In:  Movement Disorders Vol. 29, No. 10 ( 2014-09), p. 1312-1316
    Details
    In: Movement Disorders, Wiley, Vol. 29, No. 10 ( 2014-09), p. 1312-1316
    Abstract: Little is known about the swallowing disturbances of patients with Huntington's disease; therefore, we developed the Huntington's Disease Dysphagia Scale. Methods The scale was developed in four stages: (1) item generation, (2) comprehension testing, (3) evaluation of reliability, (4) item reduction and validity testing. The questionnaire was presented twice to 50 Huntington's disease patients and their caregivers. The Kruskal‐Wallis test was used to evaluate whether the severity of swallowing difficulties increased with advancing disease. Pearson's correlation coefficient was used to examine the construct validity with the Swallowing Disturbance Questionnaire. Results The final version contained 11 items with five response options and exhibited a Cronbach's alpha coefficient of 0.728. The severity of swallowing difficulties was significantly higher in more advanced Huntington's disease. The correlation with the Swallowing Disturbance Questionnaire was 0.734. Conclusion We developed a valid and reliable 11‐item scale to measure the severity of dysphagia in Huntington's disease. © 2014 International Parkinson and Movement Disorder Society
    Type of Medium: Online Resource
    ISSN: 0885-3185 , 1531-8257
    URL: Issue
    URL: Article
    DOI: 10.1002/mds.v29.10
    DOI: 10.1002/mds.25922
    RVK:
    XA 10000
    Language: English
    Publisher: Wiley
    Publication Date: 2014
    detail.hit.zdb_id: 2041249-6
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  • 6
    Online Resource
    Online Resource
    Palliative care in advanced Huntington’s disease: a scoping review
    Springer Science and Business Media LLC ; 2023
    In:  BMC Palliative Care Vol. 22, No. 1 ( 2023-05-03)
    Details
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 22, No. 1 ( 2023-05-03)
    Abstract: As Huntington’s disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care. Objective To review the literature focusing on palliative care in advanced stage HD, and the level of evidence. Methods Publications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) – V (low) were determined as defined by the Joanna Briggs Institute. Results Our search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III). Conclusions To deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient’s wishes and needs.
    Type of Medium: Online Resource
    ISSN: 1472-684X
    URL: Article
    DOI: 10.1186/s12904-023-01171-y
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2091556-1
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  • 7
    Online Resource
    Online Resource
    H6 Oral feeding in huntington’s disease: a dutch guideline for speech and language therapists
    BMJ ; 2016
    In:  Journal of Neurology, Neurosurgery & Psychiatry Vol. 87, No. Suppl 1 ( 2016-09), p. A58.3-A59
    Details
    In: Journal of Neurology, Neurosurgery & Psychiatry, BMJ, Vol. 87, No. Suppl 1 ( 2016-09), p. A58.3-A59
    Type of Medium: Online Resource
    ISSN: 0022-3050 , 1468-330X
    URL: Article
    DOI: 10.1136/jnnp-2016-314597.164
    RVK:
    XA 10000
    Language: English
    Publisher: BMJ
    Publication Date: 2016
    detail.hit.zdb_id: 1480429-3
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  • 8
    Online Resource
    Online Resource
    Aspiration pneumonia and death in Huntington’s disease
    Public Library of Science (PLoS) ; 2012
    In:  PLoS Currents Vol. 4 ( 2012-1-30), p. RRN1293-
    Details
    In: PLoS Currents, Public Library of Science (PLoS), Vol. 4 ( 2012-1-30), p. RRN1293-
    Type of Medium: Online Resource
    ISSN: 2157-3999
    URL: Article
    DOI: 10.1371/currents.RRN1293
    Language: Unknown
    Publisher: Public Library of Science (PLoS)
    Publication Date: 2012
    detail.hit.zdb_id: 2583641-9
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  • 9
    Online Resource
    Online Resource
    Oral feeding in Huntington’s disease: a guideline document for speech and language therapists
    Future Medicine Ltd ; 2012
    In:  Neurodegenerative Disease Management Vol. 2, No. 1 ( 2012-02), p. 45-53
    Details
    In: Neurodegenerative Disease Management, Future Medicine Ltd, Vol. 2, No. 1 ( 2012-02), p. 45-53
    Abstract: SUMMARY Speech and language therapy has an important role in the management of Huntington’s disease (HD). Swallowing difficulties affect most individuals with HD. Throughout the disease process these difficulties require management with timely and effective therapeutic intervention. Currently there are no European guidelines for the assessment and management of swallowing impairments in HD. The European Huntington’s Disease Network (EHDN) Standards of Care Speech and Language Therapy Working Group has brought together expert speech and language therapists from across Europe to produce guidelines to improve the management of swallowing disorders for individuals with Huntington’s disease. The guidelines were developed with the aim of promoting timely and appropriate assessment of the swallowing process and focused management throughout all stages of the disease. Literature was systematically searched in an attempt to ensure that the recommendations are based on sound evidence. Where evidence was lacking, specific guidance is based on expert consensus. The provision of care varies widely between countries in Europe and the implementation of those guidelines should improve the quality of care delivered to individuals with HD.
    Type of Medium: Online Resource
    ISSN: 1758-2024 , 1758-2032
    URL: Article
    DOI: 10.2217/nmt.11.77
    Language: English
    Publisher: Future Medicine Ltd
    Publication Date: 2012
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  • 10
    Online Resource
    Online Resource
    Dysphagia in Huntington’s Disease: A Review
    Springer Science and Business Media LLC ; 2011
    In:  Dysphagia Vol. 26, No. 1 ( 2011-3), p. 62-66
    Details
    In: Dysphagia, Springer Science and Business Media LLC, Vol. 26, No. 1 ( 2011-3), p. 62-66
    Type of Medium: Online Resource
    ISSN: 0179-051X , 1432-0460
    URL: Article
    DOI: 10.1007/s00455-010-9302-4
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2011
    detail.hit.zdb_id: 1459017-7
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