Contemporary health care for Huntington disease

Edmondson, Mary; Goodman, LaVonne

doi:10.1016/b978-0-12-801893-4.00014-6

Cited by 7 publications

(10 citation statements)

References 34 publications

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“…With regard to medical visits, most of our patients only reported follow-up visits with neurology/neurogenetics, contrasting with national and international HD guidelines. These guidelines recommend an integral healthcare strategy for HD patients that includes, in conjunction with symptomatic pharmacological therapies, regular visits to neurologists, geneticists, psychiatrists/psychologists, endocrinologists, gastroenterologists, nutritionists, rehabilitation specialists and general practitioners, among others [36, 37].…”

Section: Discussionmentioning

confidence: 99%

Economic burden of Huntington’s disease in Peru

Silva-Paredes¹,

Urbanos-Garrido

Inca‐Martinez

et al. 2019

BMC Health Serv Res

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BackgroundHuntington’s disease (HD) is a devastating and fatal neurodegenerative disorder that leads to progressive disability, and over time to total dependence. The economic impact of HD on patients living in developing countries like Peru is still unknown. This study aims to estimate the economic burden by estimating direct and indirect costs of Huntington’s disease in Peru, as well as the proportion of direct costs borne by patients and their families.MethodsDisease-cost cross-sectional study where 97 participants and their primary caregivers were interviewed using a common questionnaire. Prevalence and human capital approaches were used to estimate direct and indirect costs, respectively.ResultsThe average annual cost of HD reached USD 8120 per patient in 2015. Direct non-healthcare costs represented 78.3% of total cost, indirect costs 14.4% and direct healthcare costs the remaining 7.3%. The mean cost of HD increased with the degree of patient dependency: from USD 6572 for Barthel 4 & 5 (slight dependency and total independency, respectively) to USD 23,251 for Barthel 1 (total dependency). Direct costs were primarily financed by patients and their families.ConclusionsThe estimated annual cost of HD for Peruvian society reached USD 1.2 million in 2015. The cost impact of HD on patients and their families is very high, becoming catastrophic for most dependent patients, and thus making it essential to prioritize full coverage by the State.

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Section: Discussionmentioning

confidence: 99%

Economic burden of Huntington’s disease in Peru

Silva-Paredes¹,

Urbanos-Garrido

Inca‐Martinez

et al. 2019

BMC Health Serv Res

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“…Due to the complex clinical nature of HD, there is an increasing need for comprehensive and multidisciplinary care services ( 16 , 17 ), ranging from advice about genetic testing to palliative care. Although several HD expertise centers have been established across Europe ( 2 , 18 , 19 ), these specialist services often serve large geographical areas. Moreover, these services are not always instantly available, accessible or in close proximity to those seeking care ( 18 ).…”

Section: Introductionmentioning

confidence: 99%

“…Although several HD expertise centers have been established across Europe ( 2 , 18 , 19 ), these specialist services often serve large geographical areas. Moreover, these services are not always instantly available, accessible or in close proximity to those seeking care ( 18 ). Other barriers impeding HD care provision include health care and transportation costs ( 2 , 18 ).…”

Section: Introductionmentioning

confidence: 99%

“…Moreover, these services are not always instantly available, accessible or in close proximity to those seeking care ( 18 ). Other barriers impeding HD care provision include health care and transportation costs ( 2 , 18 ). In addition, increasing physical limitations and burden, especially in the later stages of the disease, might pose difficulty in seeking and accessing care, leaving those with the greatest care need receiving the least care ( 20 ).…”

Section: Introductionmentioning

confidence: 99%

“…As a high level of unmet needs for health and social services can negatively impact health-related QoL in HD ( 12 ), it is important to include the needs of both HDGECs and their partners in the development of eHealth technologies. By also actively involving HCPs with expertise in HD, disease-specific characteristics, in particular neuropsychiatric and cognitive impairments ( 18 ), can be considered in advance in the eHealth development process.…”

Section: Introductionmentioning

confidence: 99%

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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

et al. 2021

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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.

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