Development of Guidelines for Occupational Therapy in Huntington’s Disease

Cook, Clare; Page, Kirsty; Wagstaff, Anne; Simpson, Sheila A; Rae, D. O.

doi:10.2217/nmt.11.81

Cited by 12 publications

(12 citation statements)

References 10 publications

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“…An Occupational Therapist (OT) will seek to address the multiple facets of HD which strengthen or hinder the person’s performance in any of their activities of daily living (ADL) throughout their life span at a personal, environmental, and occupational level. As with many of the professions crucial to the success of MDT working in HD care, the scientific evidence documented for the outcomes of OT is sparse, but the value and scope of OT are acknowledged [ 44 ] with clear illustrations of the importance of assessing the functional manifestation of HD by Cook et al [ 45 ] and the consequences of not. Best practice guidelines were produced in 2012 to establish a standard of care, and from this summary, guidance is in the form of clinical tips (hda.org.uk).…”

Section: Clinical Managementmentioning

confidence: 99%

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper

Mühlbäck¹,

Walsem²,

Nance³

et al. 2023

Orphanet J Rare Dis

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Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of the disease demands multiple disciplines for treatment and care of patient and family. These health care providers need inter- and multidisciplinary collaboration to persevere and be efficacious in this devastating disease trajectory. Discussion The position paper outlines current knowledge and experience alongside the experience and consensus of a recognised group of HD multidisciplinary experts. Additionally the patient’s voice is clear and calls for health care providers with a holistic view on patient and family. Building long-term trust is a cornerstone of the network around the patient. This paper describes a managed care network comprising all the needed professionals and services. In the health care system, the role of a central coordinator or case manager is of key importance but lacks an appropriate guideline. Other disciplines currently without guidelines are general practitioners, nurses, psychologists, and social workers. Guidelines for neurologists, psychiatrists, geneticists, occupational therapists, speech and language therapists, physiotherapists, dieticians, and dentists are being discussed. Apart from all these profession-specific guidelines, distinctive inter- and multidisciplinary collaboration requirements must be met. Conclusions and recommendations The complex nature of Huntington's disease demands multidisciplinary treatment and care endorsed by international regulations and the lay association. Available guidelines as reviewed in this paper should be used, made available by a central body, and updated every 3–5 years. Time needs to be invested in developing missing guidelines but the lack of this ‘proof’ should not prevent the ‘doing’ of good care.

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Section: Clinical Managementmentioning

confidence: 99%

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper

Mühlbäck¹,

Walsem²,

Nance³

et al. 2023

Orphanet J Rare Dis

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“…Although there is general agreement that comprehensive, multidisciplinary care is needed [ 4 , 19 , 21 – 24 ], the complex and changing clinical picture may be a challenge for health professionals. Standards of care, aimed at separate groups of healthcare professionals (i.e., speech and language therapists) have been published, with the purpose of being a foundation for further research and evaluation of provided care [ 18 , 25 , 26 ]. A few clinics adapting comprehensive care models have emerged in the US, Australia and Europe [ 4 , 24 , 27 ].…”

Section: Introductionmentioning

confidence: 99%

Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional population-based study

Walsem

Howe

Iversen

et al. 2015

Orphanet J Rare Dis

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BackgroundIn order to plan and improve provision of comprehensive care in Huntington’s disease (HD), it is critical to understand the gaps in healthcare and social support services provided to HD patients. Research has described utilization of healthcare services in HD in Europe, however, studies systematically examining needs for healthcare services and social support are lacking. This study aims to identify the level and type of met and unmet needs for health and social care services among patients with HD, and explore associated clinical and socio-demographic factors.MethodsEighty-six patients with a clinical diagnosis of HD living in the South-Eastern region of Norway were recruited. Socio-demographic and clinical characteristics were collected. The Needs and Provision Complexity Scale (NPCS) was used to assess the patients’ needs for healthcare and social services. Functional ability and disease stage was assessed using the UHDRS Functional assessment scales. In order to investigate factors determining the level of total unmet needs and the level of unmet needs for Health and personal care and Social care and support services, multivariate logistic regression models were used.ResultsA high level of unmet needs for health and personal care and social support services were found across all five disease stages, but most marked in disease stage III. The middle phase (disease stage III) and advanced phase (disease stages IV and V) of HD increased odds of having a high level of total unmet needs by 3.5 times and 1.4 times respectively, compared with the early phase (disease stages I and II). Similar results were found for level of unmet needs in the domain Health and personal care. Higher education tended to decrease odds of high level of unmet needs in this domain (OR = 0.48) and increase odds of higher level of unmet needs in the domain of Social care and support (OR = 1.3). Patients reporting needs on their own tended to decrease odds of having unmet needs in Health and personal care (OR = 0.57).ConclusionsNeeds for healthcare and social services in patients with HD should be assessed in a systematic manner, in order to provide adequate comprehensive care during the course of disease.Electronic supplementary materialThe online version of this article (doi:10.1186/s13023-015-0324-8) contains supplementary material, which is available to authorized users.

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“…At the same time, a guide developed by occupational therapists who worked with patients with HD concluded that one of the most frequent problems of these patients was related to activities that involved manual tasks such as eating, fastening buttons, and writing. This is due to reduced manual dexterity, poor coordination, and reduced grip (Cook et al, 2012). Other studies based on the COPM have also identified self-care as the category, including most occupational difficulties (McColl et al, 2006).…”

Section: Discussionmentioning

confidence: 99%

Occupational performance in Huntington’s disease: A cross-sectional study

Simón-Vicente

García

Rivadeneyra-Posadas

et al. 2023

British Journal of Occupational Therapy

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Introduction: Huntington’s disease (HD) is an autosomal dominant neurodegenerative disorder characterized by motor dysfunction, cognitive impairment, and psychiatric disorders. These symptoms cause functional limitations in occupational performance. This study aimed to describe the difficulties in self-care, productivity, and leisure activities and to analyze the patients’ own perception and satisfaction and the association with sex, age, disability, HD severity, and quality of life. Method: We conducted an observational, retrospective study in 38 patients with HD without cognitive impairment at the Burgos University Hospital. We assessed occupational performance, quality of life, and HD severity with the Canadian Occupational Performance Measure, Short-Form Health Survey 12, Unified Huntington’s Disease Rating Scale, Total Functional Capacity, and the Problems Behavior Assessment. Results: One hundred sixty-five occupations (median 4, range 2–7) were categorized as self-care (50.90%), leisure (30.30%), and productivity (18.79%). Patients reported a higher degree of satisfaction with the activities prioritized than with the degree of performance. Elderly HD patients reported more satisfaction in leisure and women in self-care. Self-ratings of satisfaction in productivity were associated with higher levels of mental wellbeing. Conclusions: HD patients have problems with their daily life occupations, particularly with self-care. This underlines the need for assessment tools that capture the complexity of occupations.

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Development of Guidelines for Occupational Therapy in Huntington’s Disease

Cited by 12 publications

References 10 publications

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper

Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional population-based study

Occupational performance in Huntington’s disease: A cross-sectional study

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