An Exploratory Survey on the Care for Ataxic Patients in the American Continents and the Caribbean. Jardim, L. B., Hasan, A., Kuo, S., Magaña, J. J., França, M., Marques, W., Camejo, C., Santana-da-Silva, L. C., Leão, E. E., Espíndola, G., Canals, F., Miranda, M., Salvatierra, I., Cornejo-Olivas, M., Fernandez-Ruiz, J., Braga-Neto, P., Dávila-Ortiz de Montellano, D. J., Flores-Lagunes, L. L., Dupré, N., Brais, B., Vargas, F. R., Godeiro, C., Coutinho, L., Teive, H. G., Kaufmann, M., Saffie, P., Furtado, G. V., Saraiva-Pereira, M. L., Barsottini, O., Pedroso, J. L., Rodríguez-Labrada, R., Velázquez-Pérez, L., Gomez, C., & PAHAN Cerebellum (London, England), 22(4):708–718, August, 2023.
doi  abstract   bibtex   
Little is known about access of rare disease carriers to health care. To increase this knowledge, the Pan American Hereditary Ataxia Network (PAHAN) conducted an exploratory survey about care for hereditary ataxias in American continents and the Caribbean. A questionnaire was sent to health professionals about the hereditary ataxias identified; access to care; and local teaching and research. The number of ataxics under current care per 100,000 inhabitants was subtracted from the expected overall prevalence of 6/100,000, to estimate the prevalence of uncovered ataxic patients. Local Human Development Indexes (HDI) were used to measure socio-economic factors. Twenty-six sites participated. Twelve sites had very high, 13 had high, and one site had medium HDI. Participants reported on 2239 and 602 patients with spinocerebellar ataxias and recessive forms under current care. The number of patients under current care per inhabitants varied between 0.14 and 12/100,000. The estimated prevalence of uncovered ataxic patients was inversely proportional to HDIs (rho = 0.665, p = 0.003). Access to diagnosis, pre-symptomatic tests, and rehabilitation were associated with HDIs. More and better molecular diagnostic tools, protocols and guidelines, and professional training for ataxia care were the top priorities common to all respondents. Evidence of inequalities was confirmed. Lower HDIs were associated with high potential numbers of uncovered ataxic subjects, and with lack of molecular diagnosis, pre-symptomatic testing, and rehabilitation. More and better diagnostic tools, guidelines, and professional training were priorities to all sites. PAHAN consortium might help with the last two tasks.
@article{jardim_exploratory_2023,
	title = {An {Exploratory} {Survey} on the {Care} for {Ataxic} {Patients} in the {American} {Continents} and the {Caribbean}},
	volume = {22},
	issn = {1473-4230},
	doi = {10.1007/s12311-022-01442-z},
	abstract = {Little is known about access of rare disease carriers to health care. To increase this knowledge, the Pan American Hereditary Ataxia Network (PAHAN) conducted an exploratory survey about care for hereditary ataxias in American continents and the Caribbean. A questionnaire was sent to health professionals about the hereditary ataxias identified; access to care; and local teaching and research. The number of ataxics under current care per 100,000 inhabitants was subtracted from the expected overall prevalence of 6/100,000, to estimate the prevalence of uncovered ataxic patients. Local Human Development Indexes (HDI) were used to measure socio-economic factors. Twenty-six sites participated. Twelve sites had very high, 13 had high, and one site had medium HDI. Participants reported on 2239 and 602 patients with spinocerebellar ataxias and recessive forms under current care. The number of patients under current care per inhabitants varied between 0.14 and 12/100,000. The estimated prevalence of uncovered ataxic patients was inversely proportional to HDIs (rho = 0.665, p = 0.003). Access to diagnosis, pre-symptomatic tests, and rehabilitation were associated with HDIs. More and better molecular diagnostic tools, protocols and guidelines, and professional training for ataxia care were the top priorities common to all respondents. Evidence of inequalities was confirmed. Lower HDIs were associated with high potential numbers of uncovered ataxic subjects, and with lack of molecular diagnosis, pre-symptomatic testing, and rehabilitation. More and better diagnostic tools, guidelines, and professional training were priorities to all sites. PAHAN consortium might help with the last two tasks.},
	language = {eng},
	number = {4},
	journal = {Cerebellum (London, England)},
	author = {Jardim, Laura Bannach and Hasan, Ali and Kuo, Sheng-Han and Magaña, Jonathan Javier and França, Marcondes and Marques, Wilson and Camejo, Claudia and Santana-da-Silva, Luiz Carlos and Leão, Emília Embiruçu and Espíndola, Gisele and Canals, Francisca and Miranda, Marcelo and Salvatierra, Igor and Cornejo-Olivas, Mario and Fernandez-Ruiz, Juan and Braga-Neto, Pedro and Dávila-Ortiz de Montellano, David José and Flores-Lagunes, Luis Leonardo and Dupré, Nicolas and Brais, Bernard and Vargas, Fernando Regla and Godeiro, Clécio and Coutinho, Léo and Teive, Helio G. and Kaufmann, Marcelo and Saffie, Paula and Furtado, Gabriel Vasata and Saraiva-Pereira, Maria Luiza and Barsottini, Orlando and Pedroso, José Luiz and Rodríguez-Labrada, Roberto and Velázquez-Pérez, Luis and Gomez, Christopher and {PAHAN}},
	month = aug,
	year = {2023},
	pmid = {35796998},
	keywords = {Access to health care, American continents, Ataxia, Caribbean Region, Cerebellar Ataxia, Humans, Inherited ataxias, Spinocerebellar Ataxias, Spinocerebellar Degenerations, The Caribbean},
	pages = {708--718},
}
Downloads: 0
About
Documentation
Keywords
Search
Users
Terms and Conditions of Use
Privacy Policy
Sitemap
© BibBase.org 2021