RESUMEN
Background: Huntington's disease (HD) exerts significant impacts on individuals and families worldwide. Nevertheless, data on its economic burden in Brazil are scarce, revealing a critical gap in understanding the associated healthcare costs. Objective: This study was conducted at a tertiary neurology outpatient clinic in Brazil with the aim of assessing annual healthcare service utilization and associated costs for HD patients. Methods: We conducted a cross-sectional observational study involving 34 HD patients. A structured questionnaire was applied to collect data on direct medical costs (outpatient services, medications), non-medical direct costs (complementary therapies, mobility aids, home adaptations), and indirect costs (lost productivity, caregiver costs, government benefits) over one year. Results: Significant economic impacts were observed, with average annual direct medical costs of $4686.82 per HD patient. Non-medical direct and indirect costs increased the financial burden, highlighting extensive resource utilization beyond healthcare services. Thirty-three out of 34 HD patients were unemployed or retired, and 16 relied on government benefits, reflecting broader socioeconomic implications. Despite the dataset's limitations, it provides crucial insights into the economic impact of HD on patients and the Brazilian public health system. Conclusions: The findings underscore the urgent need for a more comprehensive evaluation of the costs to inform governmental policies related to HD. Future research is needed to expand the data pool and develop a nuanced understanding of the economic burdens of HD to help formulate effective healthcare strategies for patients.
Asunto(s)
Costo de Enfermedad , Costos de la Atención en Salud , Enfermedad de Huntington , Humanos , Enfermedad de Huntington/economía , Enfermedad de Huntington/terapia , Brasil , Masculino , Femenino , Estudios Transversales , Persona de Mediana Edad , Costos de la Atención en Salud/estadística & datos numéricos , Adulto , Atención Terciaria de Salud/economía , AncianoRESUMEN
BACKGROUND: Huntington'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. METHODS: Disease-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. RESULTS: The 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. CONCLUSIONS: The 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.
Asunto(s)
Costo de Enfermedad , Enfermedad de Huntington/economía , Adulto , Estudios Transversales , Femenino , Costos de la Atención en Salud/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Perú , Encuestas y CuestionariosAsunto(s)
Instituciones de Atención Ambulatoria/tendencias , Recursos en Salud/tendencias , Enfermedad de Huntington/epidemiología , Enfermedad de Huntington/terapia , Neurología/tendencias , Instituciones de Atención Ambulatoria/economía , Recursos en Salud/economía , Humanos , Enfermedad de Huntington/economía , Enfermedades Neurodegenerativas/economía , Enfermedades Neurodegenerativas/epidemiología , Enfermedades Neurodegenerativas/terapia , Neurología/economía , Perú/epidemiologíaAsunto(s)
Personajes , Enfermedad de Huntington/psicología , Enfermedad de Huntington/terapia , Religión y Medicina , Estigma Social , Investigación Biomédica/economía , Investigación Biomédica/tendencias , Femenino , Humanos , Enfermedad de Huntington/economía , Masculino , Ciudad del Vaticano , VenezuelaRESUMEN
Among the diseases affecting the central nervous system (CNS), neurodegenerations attract the interest of both the clinician and the medicinal chemist. The increasing average age of population, the growing number of patients, and the lack of long-term effective remedies push ahead the quest for novel tools against this class of pathologies. We present a review on the state of the art of the molecules (or combination of molecules) of natural origin that are currently under study against two well-defined pathologies: Parkinson's disease (PD) and Huntington's disease (HD). Nowadays, very few tools are available for preventing or counteracting the progression of such diseases. Two major parameters were considered for the preparation of this review: particular attention was reserved to these research works presenting well-defined molecular mechanisms for the studied compounds, and where available, papers reporting in vivo data were preferred. A literature search for peer-reviewed articles using PubMed, Scopus, and Reaxys databases was performed, exploiting different keywords and logical operators: 91 papers were considered (preferentially published after 2015). The review presents a brief overview on the etiology of the studied neurodegenerations and the current treatments, followed by a detailed discussion of the natural and semisynthetic compounds dividing them in different paragraphs considering their several mechanisms of action.
Asunto(s)
Antidiscinéticos/química , Productos Biológicos/química , Enfermedad de Huntington/tratamiento farmacológico , Enfermedad de Parkinson/tratamiento farmacológico , Animales , Antidiscinéticos/síntesis química , Antidiscinéticos/economía , Antidiscinéticos/uso terapéutico , Antioxidantes/farmacología , Antioxidantes/uso terapéutico , Antiparkinsonianos/síntesis química , Antiparkinsonianos/química , Antiparkinsonianos/economía , Antiparkinsonianos/uso terapéutico , Autofagia/efectos de los fármacos , Productos Biológicos/economía , Productos Biológicos/uso terapéutico , Demencia/tratamiento farmacológico , Demencia/economía , Demencia/epidemiología , Dopamina/metabolismo , Descubrimiento de Drogas , Evaluación Preclínica de Medicamentos , Humanos , Enfermedad de Huntington/economía , Enfermedad de Huntington/epidemiología , Enfermedad de Huntington/fisiopatología , Microglía/efectos de los fármacos , Mitocondrias/efectos de los fármacos , Terapia Molecular Dirigida , Inhibidores de la Monoaminooxidasa/uso terapéutico , Estrés Oxidativo/efectos de los fármacos , Enfermedad de Parkinson/economía , Enfermedad de Parkinson/epidemiología , Enfermedad de Parkinson/fisiopatología , Preparaciones de Plantas/farmacología , Preparaciones de Plantas/uso terapéutico , Agregación Patológica de Proteínas/tratamiento farmacológico , Transducción de Señal/efectos de los fármacos , alfa-Sinucleína/antagonistas & inhibidoresRESUMEN
BACKGROUND AND PURPOSE: Approximately 9000 people in the UK are affected by Huntington's disease (HD). People with HD require ongoing health and social care support. There is a knowledge gap about costs of health and social care use associated with HD in the UK. This paper estimates the economic cost in the UK. METHODS: Data on UK patients for the year 2013 were extracted from the European Huntington's Disease Network REGISTRY study, a full clinical dataset, including the full medical history and medication history for patients with HD. National unit costs for the price year 2013 were applied to health and social care services. RESULTS: Data were available for 131 people. The mean annual cost per person with HD was £21 605. The largest proportion of this cost (65%) was due to informal care (£14 085). CONCLUSIONS: Informal care was the largest driver of costs across all stages of HD; thus there is a need to also consider the needs of carers when planning services for people with HD.
Asunto(s)
Costos de la Atención en Salud/estadística & datos numéricos , Enfermedad de Huntington/economía , Atención al Paciente/economía , Sistema de Registros/estadística & datos numéricos , Humanos , Reino UnidoRESUMEN
BACKGROUND: Huntington's disease (HD) is a progressive neurodegenerative disease that spans distinct disease stages over 15-20 years. Various interventions are available which may allow patients to live outside of a nursing home for a longer time. However, little is known about use of these interventions by disease stage and by insurance type. OBJECTIVE: We compared use of interventions among early, middle and late stages of HD in commercial (C) and Medicaid (M) health insurance populations. METHODS: HD patients (ICD-9-CM 333.4) were identified from Thomson Reuters' MarketScan C and M database (2002-2009) and hierarchically grouped into disease stages based upon the presence of defining clinical markers. RESULTS: A total of 1,272 HD patients (752/520 C/M) were identified. While stage distribution was nearly uniform in the C database - 34.0/35.5/34.0% (early/middle/late stage) - in the M population the majority were late stage (74.0%). Overall mean age was similar between C and M populations. Among late-stage patients, more M patients resided in a nursing home (M:73.8% v. C:40.6%) and received hospice care (M:18.4% v. C:11.3%). Physical therapy (PT) and home assistance were the most frequent interventions used by middle-stage patients, however more C patients received PT (C:64.0% v. M:37.1%) while more M patients received home assistance (M:75.3% v. C:53.2%). Among late-stage patients, PT was also higher in the C population (56.3% v. 48.3%). More M patients had assistive devices at home in both middle (M:25.8% v. C:9.7%) and late stages (M:35.6% v.C:23.4%). CONCLUSIONS: Apparent interventional differences emerged which varied by disease stage and insurance type.
Asunto(s)
Enfermedad de Huntington/epidemiología , Enfermedad de Huntington/terapia , Seguro de Salud/estadística & datos numéricos , Medicaid/estadística & datos numéricos , Adolescente , Adulto , Anciano , Bases de Datos Factuales , Progresión de la Enfermedad , Femenino , Humanos , Enfermedad de Huntington/economía , Masculino , Persona de Mediana Edad , Estudios Retrospectivos , Estados Unidos/epidemiología , Adulto JovenRESUMEN
OBJECTIVE: This study quantified the direct healthcare costs and major cost drivers among patients with Huntington's disease (HD), by disease stage in commercial and Medicaid databases. METHODS: This retrospective database analysis used healthcare utilization/cost data for HD patients (ICD-9-CM 333.4) from Thomson Reuters' MarketScan Commercial and Medicaid 2002-2009 databases. Patients were classified by disease stage (Early/Middle/Late) by a hierarchical assessment of markers of disease severity, confirmed by literature review and key opinion leader input. Costs were measured over the follow-up time of each patient with total costs per patient per stage annualized using a patient-year cost approach. RESULTS: Among 1272 HD patients, the mean age was similar in commercial (752 patients) and Medicaid (520 patients) populations (48.5 years (SD = 13.3) and 49.3 years (SD = 17.2), respectively). Commercial patients were evenly distributed by stage (30.5%/35.5%/34.0%; Early/Middle/Late). However, most (74.0%) Medicaid HD patients were classified as Late stage. The mean total annualized cost per patient increased by stage (commercial: $4947 (SD = $6040)-$22,582 (SD = $39,028); Medicaid: $3257 (SD = $5670)-$37,495 (SD = $27,111). Outpatient costs were the primary healthcare cost component. The vast majority (73.8%) of Medicaid Late stage patients received nursing home care and the majority (54.6%) of Medicaid Late stage costs were associated with nursing home care. In comparison, only 40.6% of commercial Late stage patients received nursing home care, which contributed to only 4.6% of commercial Late stage costs. CONCLUSIONS: The annual direct economic burden of HD is substantial and increased with disease progression. More late stage Medicaid HD patients were in nursing homes and for a longer time than their commercial counterparts, reflected by their higher costs (suggesting greater disease severity). Key limitations include the classification of patients into a single stage, as well as a lack of visibility into full long-term care/nursing home-related costs for commercial patients.
Asunto(s)
Servicios de Salud/economía , Servicios de Salud/estadística & datos numéricos , Enfermedad de Huntington/economía , Seguro de Salud/estadística & datos numéricos , Medicaid/estadística & datos numéricos , Adolescente , Adulto , Anciano , Progresión de la Enfermedad , Femenino , Humanos , Enfermedad de Huntington/fisiopatología , Revisión de Utilización de Seguros/estadística & datos numéricos , Cuidados a Largo Plazo/economía , Masculino , Persona de Mediana Edad , Modelos Económicos , Estudios Retrospectivos , Índice de Severidad de la Enfermedad , Estados Unidos , Adulto JovenAsunto(s)
Detección Precoz del Cáncer/estadística & datos numéricos , Escolaridad , Conductas Relacionadas con la Salud , Enfermedad de Huntington , Adolescente , Adulto , Femenino , Humanos , Enfermedad de Huntington/economía , Esperanza de Vida , Masculino , Persona de Mediana Edad , Servicios Preventivos de Salud/estadística & datos numéricos , Fumar , Estados UnidosRESUMEN
BACKGROUND: The purpose of this study is to investigate the epidemiology and medical expenses of Huntington's disease (HD) in Taiwan. METHODS: Cases of HD were identified from the National Health Insurance Research Database with corresponding International Classification of Diseases, Ninth Revision (ICD-9) code 333.4 from January 2000 to December 2007. Age- and sex-specific incidences were estimated by dividing the incidence number by population data obtained from the Department of Statistics, Ministry of the Interior. RESULTS: During the study period, 182 cases were identified, including 81 males and 101 females. The average annual incidence rate was 0.1 per 100,000. The age-specific incidence peaked in the 40-49 age group in men (0.23 per 100,000 per year) and in the 50-59 age group in women (0.24 per 100,000 per year). The incidence rate was only 0.01 per 100,000 per year in those under 20 years of age. The prevalence was 0.42 per 100,000 in 2007. CONCLUSIONS: This is the first population-based epidemiologic study on HD in Taiwan. The incidence rates and prevalence were much lower than those of Caucasians although the age distribution was similar.
Asunto(s)
Enfermedad de Huntington/epidemiología , Adulto , Distribución por Edad , Anciano , Anciano de 80 o más Años , Pueblo Asiatico/estadística & datos numéricos , Femenino , Costos de la Atención en Salud , Servicios de Salud/economía , Servicios de Salud/estadística & datos numéricos , Humanos , Enfermedad de Huntington/economía , Enfermedad de Huntington/terapia , Incidencia , Masculino , Persona de Mediana Edad , Prevalencia , Distribución por Sexo , Taiwán/epidemiología , Población Blanca/estadística & datos numéricos , Adulto JovenAsunto(s)
Investigación Biomédica/economía , Organizaciones de Beneficencia/economía , Fundaciones/economía , Enfermedad de Huntington/economía , Investigadores/economía , Apoyo a la Investigación como Asunto/economía , Animales , Financiación Gubernamental/economía , Humanos , Enfermedad de Huntington/terapia , Ratones , Reino UnidoRESUMEN
Ideomotor limb apraxia, a disorder of goal-directed movement, has been attributed to lesions in the frontal and parietal lobes, but the role of subcortical structures is less certain. In order to determine its prevalence in a disorder affecting the basal ganglia and corticostriatal connections, we examined imitation of hand gestures in Huntington's disease (HD) patients. We also assessed the relationship between apraxia and cognitive and motor dysfunction in an effort to better understand the neural underpinnings of apraxia in HD. If damage restricted to the basal ganglia produces ideomotor limb apraxia, then we would expect to find evidence of apraxia in patients who were early in the disease course when selective striatal damage is most common. Such a pattern, however, was not found in our sample. Instead, patients with greater neurological impairment and with a longer duration of disease were more likely than less affected patients to demonstrate apraxia. Apraxia was not related to severity of chorea, but was associated with greater impairment in eye movements, voluntary movements, and verbal fluency. These findings suggest that apraxia in HD results from damage to the corticostriate pathways and the basal ganglia rather than from damage restricted to the basal ganglia.
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Apraxia Ideomotora/etiología , Ganglios Basales/fisiopatología , Corteza Cerebral/fisiopatología , Enfermedad de Huntington/fisiopatología , Adulto , Anciano , Análisis de Varianza , Estudios de Casos y Controles , Extremidades , Movimientos Oculares/fisiología , Femenino , Humanos , Enfermedad de Huntington/economía , Masculino , Persona de Mediana Edad , Destreza Motora/fisiología , Pruebas Neuropsicológicas , Desempeño Psicomotor , Análisis de RegresiónAsunto(s)
Pruebas Genéticas/legislación & jurisprudencia , Enfermedad de Huntington/genética , Cobertura del Seguro/legislación & jurisprudencia , Selección Tendenciosa de Seguro , Ética Médica , Testimonio de Experto , Genes Dominantes , Predisposición Genética a la Enfermedad , Humanos , Enfermedad de Huntington/economía , Prejuicio , Reino UnidoRESUMEN
Home assistance has recently received wide approval among the facilities provided to the individuals suffering from chronic-degenerative diseases. This mode of caring seems to offer both the opportunities to reduce costs and to allow the affected individual to live in a familiar environment. The increasing relevance of genetic diseases in the context of the National Health Service suggested the authors to analyze, by means of an ad hoc questionnaire, the experience of home assistance in a group of families with Huntington's Disease (HD). HD is a chronic, degenerative, genetic disease characterized by neurological and/or mental symptoms. The article underlines the peculiar and complex needs of individuals affected by genetic diseases and of their families.
Asunto(s)
Enfermedades Genéticas Congénitas/enfermería , Servicios de Atención de Salud a Domicilio , Enfermedad de Huntington/enfermería , Adulto , Anciano , Cuidadores , Control de Costos , Familia , Femenino , Necesidades y Demandas de Servicios de Salud , Servicios de Atención de Salud a Domicilio/economía , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Auxiliares de Salud a Domicilio , Atención Domiciliaria de Salud/estadística & datos numéricos , Humanos , Enfermedad de Huntington/economía , Italia , Masculino , Persona de Mediana Edad , Programas Nacionales de Salud , Educación del Paciente como Asunto , Satisfacción del Paciente , Encuestas y CuestionariosRESUMEN
La enfermedad de Huntington (EH) es un padecimiento neurodegenerativo y autosómico dominante, caracterizado por movimientos involuntarios, alteraciones de la conducta y demencia. El diagnóstico confirmativo trae consigo una serie de reacciones en la familia y en el paciente; ambas se ven en la necesidad de hacer cambios en su estilo de vida. La economía se ve afectada directamente, pues el paciente ya no contribuye al ingreso familiar; todo esto trae como consecuencia que la dinámica familiar se vea afectada teniendo que adaptarse a nuevas situaciones. El presente trabajo tiene como objetivo conocer el perfil socioeconómico y la dinámica familiar de 36 familias con EH estudiadas en el departamento de neurogenética del Instituto Nacional de Neurología y Neurocirugía, se aplicó un cuestionario estructurado con 16 reactivos que recabaron información sociodemográfica, económica y familiar. En las 36 familias había hasta el momento de la investigación, 41 pacientes vivos y 243 personas en riesgo de éstas 116 ya son padres de familia. La situación socioeconómica encontrada fue precaria debido a que el ingreso mensual sólo alcanza para cubrir las necesidades básicas. En importante mencionar que el 4 por ciento de las familias sufrió modificaciones con respecto a la comunicación que mantenían antes del diagnóstico y el 19 por ciento sufrió ruptura total de la convivencia. Es importante seguir fomentando la participación de los familiares en el grupo de apoyo para incrementar los conocimientos acerca de la enfermedad y así contribuir a la mejor adaptación y aceptación del paciente
Asunto(s)
Humanos , Masculino , Femenino , Persona de Mediana Edad , Enfermedad de Huntington/economía , Relaciones Familiares , Gastos en Salud , Enfermedad de Huntington , Factores SocioeconómicosAsunto(s)
Enfermedad de Huntington/enfermería , Casas de Salud/organización & administración , Adulto , Humanos , Enfermedad de Huntington/economía , Diseño Interior y Mobiliario , Cuidados a Largo Plazo/economía , Medicaid , Persona de Mediana Edad , Casas de Salud/economía , Grupo de Atención al Paciente , Estados UnidosRESUMEN
Yearly changes of intractable disease patients receiving financial aid for treatment were observed for 24 intractable disease patients from 1983 to 1987. The results obtained were as follows. 1. The number of intractable disease patients receiving financial aid for treatment increased from 1983 to 1987 for 23 of the diseases. Only the number of SMON patients did not increase. 2. Medical care expenditures for these patients also increased since 1983. Greater increases for in-patients than for out-patients were seen for Huntington's chorea and Behcet's disease, while larger increases were seen for out-patients with Parkinson's disease, Scleroderma.dermatomyositis.primary multiple myositis, Buerger's disease, and others. 3. The proportion of national health insurance holders among intractable disease patients was 42.1% as compared with 34.7% among total national patients. The proportion was especially higher for Huntington's chorea (64.6%), Parkinson's disease (64.1%) and SMON (59.4%) patients.
Asunto(s)
Síndrome de Behçet/economía , Gastos en Salud , Enfermedad de Huntington/economía , Programas Nacionales de Salud , Enfermedad de Parkinson/economía , Síndrome de Behçet/epidemiología , Asignación de Costos , Humanos , Enfermedad de Huntington/epidemiología , Lactante , Pacientes Internos , Pacientes Ambulatorios , Enfermedad de Parkinson/epidemiologíaRESUMEN
The cost and place of care of 158 patients affected with Huntington's chorea in the North Western Region was analysed with respect to their age, domestic background and the nature and duration of their symptoms. Twenty-five per cent of patients are in residential care which is more costly and less desirable than supported care at home. The paper discusses the various options for the care of those with progressive long term neurological disorders.