Hostname: page-component-76d6cb85b7-vdhp9 Total loading time: 0 Render date: 2026-07-22T01:42:04.537Z Has data issue: false hasContentIssue false
  • English
  • Français

Specialty Care Programme for Autism Spectrum Disorders in an Urban Population: A Case-Management Model for Health Care Delivery in an asd Population

Published online by Cambridge University Press:  09 September 2011

M. Parellada ,
L. Boada ,
C. Moreno ,
C. Llorente ,
J. Romo ,
C. Muela  and
C. Arango
M. Parellada*
Affiliation:
Department of psychiatry, Hospital General Universitario Gregorio Marañón, Centro de Investigación Biomédica en Red de Salud Mental, CIBERSAM, Madrid, Spain
L. Boada
Affiliation:
Department of psychiatry, Hospital General Universitario Gregorio Marañón, Madrid, Spain
C. Moreno
Affiliation:
Department of psychiatry, Hospital General Universitario Gregorio Marañón, Centro de Investigación Biomédica en Red de Salud Mental, CIBERSAM, Madrid, Spain
C. Llorente
Affiliation:
Department of psychiatry, Hospital General Universitario Gregorio Marañón, Madrid, Spain
J. Romo
Affiliation:
Department of psychiatry, Hospital General Universitario Gregorio Marañón, Madrid, Spain
C. Muela
Affiliation:
Asociación Nuevo Horizonte, Federación Austismo, Madrid, Spain
C. Arango
Affiliation:
Department of psychiatry, Hospital General Universitario Gregorio Marañón, Centro de Investigación Biomédica en Red de Salud Mental, CIBERSAM, Madrid, Spain
*
⁎Corresponding author. E-mail address: parellada@hggm.es (M. Parellada).
Get access

Abstract

Subjects with autism spectrum disorders (ASD) have more medical needs and more difficulties accessing health care services than the general population. Their verbal and non-verbal communication difficulties and particular behaviors, along with lack of expertise on the part of physicians and failure of the services to make adjustments, make it difficult for them to obtain an appropriate health care.

Purpose

To describe a model for health care delivery in an ASD population.

Method

Review of relevant literature and a discussion process with stakeholders leading to the design of a service to meet the specialty health needs of subjects of all ages with ASD for a region with a population of 6,000,000.

Results

A service was designed centred around the concepts of case management, individualization, facilitation, accompaniment, continuous training and updating, and quality management. Five hundred and thirteen patients with ASD have been seen over a period of 18 months. The programme generated 1566 psychiatric visits and 1052 visits to other specialties (mainly Nutrition, Stomatology, Neurology, and Gastroenterology) in the same period.

Conclusion

Persons with ASD may benefit from adjustments of health care services in order to improve their access to adequate health care at the quality level of the rest of the population.

Keywords

AutismQuality of carePsychiatry in Europe

Information

Type
Original article
Information
European Psychiatry , Volume 28 , Issue 2 , February 2013 , pp. 102 - 109
Copyright
Copyright © Elsevier Masson SAS 2013

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Article purchase

Temporarily unavailable

References

Alvarez, R., Lobatón, S., Rojano, M.Las personas con autismo en el ámbito sanitario: una guía para profesionales, familiares y personas con TEA: Federación Autismo Andalucía; 2005.Google Scholar
Autism Task Force. Autism: searching for a brighter future, Service Guidelines for Individuals with Autism Spectrum Disorder/Pervasive Developmental Disorder (ASD/PDD), Birth to Twenty-One 2003.Google Scholar
Bauman, M.L.Medical comorbidities in autism: challenges to diagnosis and treatment. Neurotherapeutics. 2010;7(3):320–327.CrossRefGoogle ScholarPubMed
Belinchón, M.Situación y necesidades de las personas con Trastornos del Espectro Autista en la Comunidad de Madrid. Universidad Autónoma, Madrid: Caja Madrid, Obra Social; 2001.Google Scholar
Brookman-Frazee, L.I., Taylor, R., Garland, A.F.Characterizing community-based mental health services for children with autism spectrum disorders and disruptive behavior problems. J Autism Dev Disord 2010;40(10):1188–1201.CrossRefGoogle ScholarPubMed
Buie, T., Campbell, D.B., Fuchs, G.J.3rd, Furuta, G.T., Levy, J., Vandewater, J.et al.Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: a consensus report. Pediatrics 2010;125(Suppl. 1):S1–S18.CrossRefGoogle ScholarPubMed
Burke, L.M., Kalpakjian, C.Z., Smith, Y.R., Quint, E.H.Gynecologic issues of adolescents with Down syndrome, autism, and cerebral palsy. J Pediatr Adolesc Gynecol 2010;23(1):11–15.CrossRefGoogle ScholarPubMed
California-Department-of-Developmental-Services. Autism Spectrum Disorders, best practice guidelines for screening diagnosis and assessment 2002.Google Scholar
Carr, E.G., Owen-Deschryver, J.S.Physical illness, pain, and problem behavior in minimally verbal people with developmental disabilities. J Autism Dev Disord 2007;37(3):413–424.CrossRefGoogle ScholarPubMed
Coury, D., Jones, N.E., Klatka, K., Winklosky, B., Perrin, J.M.Healthcare for children with autism: the Autism Treatment Network. Curr Opin Pediatr 2009;21(6):828–832.CrossRefGoogle ScholarPubMed
Couteur, A., Group, W.National Autism Plan for Children (NAPC) plan for the identification, diagnosis and access to early itnerventions for pre-school and primary school aged children with autism spectrum disorders (ASD), produced by NIASA: National Initiative for autism: screening and assessment March, 2003.Google Scholar
Curtin, C., Bandini, L.G., Perrin, E.C., Tybor, D.J., Must, A.Prevalence of overweight in children and adolescents with attention deficit hyperactivity disorder and autism spectrum disorders: a chart review. BMC Pediatr 2005;5:48.CrossRefGoogle ScholarPubMed
Decálogo conclusión del seminario de la atención sanitaria a las personas con discapacidad. Tercer punto. 2001.Google Scholar
Denis, D., Burillon, C., Livet, M.O., Burguiere, O.Ophthalmologic signs in children with autism. J Fr Ophtalmol 1997;20(2):103–110.Google ScholarPubMed
Dua, V.Standards and guidelines for the assessment and diagnosis of young children with autism spectrum disorder in British Columbia, an evidence-based report. British Columbia Ministry of Health Planning; 2003.Google Scholar
Ekinci, O., Arman, A.R., Isik, U., Bez, Y., Berkem, M.EEG abnormalities and epilepsy in autistic spectrum disorders: clinical and familial correlates. Epilepsy Behav 2010;17(2):178–182.CrossRefGoogle ScholarPubMed
Encuesta De Satisfacción De Los Usuarios De Los Servicios De Atención Primaria. Madrid: Instituto Nacional De Salud, Subdireccion General de Coordinacion administrativa 2001 Contract No.: ISBN 84-351-0396-X.Google Scholar
Esbensen, A.J., Greenberg, J.S., Seltzer, M.M., Aman, M.G.A longitudinal investigation of psychotropic and non-psychotropic medication use among adolescents and adults with autism spectrum disorders. J Autism Dev Disord 2009;39(9):1339–1349.CrossRefGoogle ScholarPubMed
Gerlai, J., Gerlai, R.Autism: a large unmet medical need and a complex research problem. Physiol Behav 2003;79(3):461–470.CrossRefGoogle Scholar
Gillberg, C., Billstedt, E.Autism and Asperger syndrome: coexistence with other clinical disorders. Acta Psychiatr Scand 2000;102(5):321–330.CrossRefGoogle ScholarPubMed
Gillberg, C., Billstedt, E., Sundh, V., Gillberg, I.C.Mortality in autism: a prospective longitudinal community-based study. J Autism Dev Disord 2010;40(3):352–357.CrossRefGoogle ScholarPubMed
Golnik, A., Ireland, M., Borowsky, I.W.Medical homes for children with autism: a physician survey. Pediatrics 2009;123(3):966–971.CrossRefGoogle ScholarPubMed
Hedley, A.A., Ogden, C.L., Johnson, C.L., Carroll, M.D., Curtin, L.R., Flegal, K.M.Prevalence of overweight and obesity among US children, adolescents, and adults, 1999–2002. JAMA 2004;291(23):2847–2850.CrossRefGoogle Scholar
Herbert, M.R.Large brains in autism: the challenge of pervasive abnormality. Neuroscientist 2005;11(5):417–440.CrossRefGoogle ScholarPubMed
Horvath, K., Perman, J.A.Autism and gastrointestinal symptoms. Curr Gastroenterol Rep 2002;4(3):251–258.CrossRefGoogle ScholarPubMed
Ingudomnukul, E., Baron-Cohen, S., Wheelwright, S., Knickmeyer, R.Elevated rates of testosterone-related disorders in women with autism spectrum conditions. Horm Behav 2007;51(5):597–604.CrossRefGoogle ScholarPubMed
James, S.J., Melnyk, S., Jernigan, S., Hubanks, A., Rose, S., Gaylor, D.W.Abnormal transmethylation/transsulfuration metabolism and DNA hypomethylation among parents of children with autism. J Autism Dev Disord 2008;38(10):1976.CrossRefGoogle ScholarPubMed
Jordan, R., Jones, G., Morgan, H.Guide to services for children with Autistic Spectrum Disorders for commisioners and providers: foundation for people with learning disabilities. Dhirley Foundations; 1998.Google Scholar
Kogan, M.D., Strickland, B.B., Blumberg, S.J., Singh, G.K., Perrin, J.M., van Dyck, P.C.A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics 2008;122(6):e1149–e1158.CrossRefGoogle ScholarPubMed
Konstantareas, M.M., Homatidis, S.Ear infections in autistic and normal children. J Autism Dev Disord 1987;17(4):585–594.CrossRefGoogle ScholarPubMed
Krakowiak, P., Goodlin-Jones, B., Hertz-Picciotto, I., Croen, L.A., Hansen, R.L.Sleep problems in children with autism spectrum disorders, developmental delays, and typical development: a population-based study. J Sleep Res 2008;17(2):197–206.CrossRefGoogle ScholarPubMed
Krauss, M.W., Gulley, S., Sciegaj, M., Wells, N.Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Ment Retard 2003;41(5):329–339.2.0.CO;2>CrossRefGoogle ScholarPubMed
Kuehn, B.M.CDC: autism spectrum disorders common. JAMA 2007;297(9):940.Google ScholarPubMed
Liptak, G.S., Stuart, T., Auinger, P.Health care utilization and expenditures for children with autism: data from U.S. national samples. J Autism Dev Disord 2006;36(7):871–879.CrossRefGoogle ScholarPubMed
Liptak, G.S., Benzoni, L.B., Mruzek, D.W., Nolan, K.W., Thingvoll, M.A., Wade, C.M.et al.Disparities in diagnosis and access to health services for children with autism: data from the National Survey of Children's Health. J Dev Behav Pediatr 2008;29(3):152–160.CrossRefGoogle ScholarPubMed
Magalhaes, E.S., Pinto-Mariz, F., Bastos-Pinto, S., Pontes, A.T., Prado, E.A., deAzevedo, L.C.Immune allergic response in Asperger syndrome. J Neuroimmunol 2009;216(1–2):108–112.CrossRefGoogle ScholarPubMed
McConachie, H., Robinson, G.What services do young children with autism spectrum disorder receive?. Child Care Health Dev 2006;32(5):553–557.CrossRefGoogle Scholar
Medical Research Council. Review of autism research, epidemiology and causes. United Kigdom 2001.Google Scholar
Merkes, M., Lewis, V., Canaway, R.Supporting good practice in the provision of services to people with comorbid mental health and alcohol and other drug problems in Australia: describing key elements of good service models. BMC Health Serv Res 2010;10:325.CrossRefGoogle ScholarPubMed
Michel, T.M., Sheldrick, A.J., Frentzel, T.G., Herpertz-Dahlmann, B., Herpertz, S., Habel, U.et al.Evaluation of diagnostic and therapeutic services in German university hospitals for adults with autism spectrum disorder (ASD). Fortschr Neurol Psychiatr 2010;78(7):402–413.CrossRefGoogle Scholar
Ming, X., Hashim, A., Fleishman, S., West, T., Kang, N., Chen, X.et al.Access to specialty care in autism spectrum disorders-a pilot study of referral source. BMC Health Serv Res 2011;11(1):99.CrossRefGoogle ScholarPubMed
Mouridsen, S.E., Bronnum-Hansen, H., Rich, B., Isager, T.Mortality and causes of death in autism spectrum disorders: an update. Autism 2008;12(4):403–414.CrossRefGoogle ScholarPubMed
Muñoz, J., Marin, M.Yo también digo 33: Programa para el apoyo y la mejora de la atención a personas con discapacidad intellectual en el ámbito de la salud. Madrid: Centro de Psicología Aplicada, Universidad Autónoma de Madrid; 2004.Google Scholar
Paavonen, E.J., Vehkalahti, K., Vanhala, R., von Wendt, L., Nieminen-von Wendt, T., Aronen, E.T.Sleep in children with Asperger syndrome. J Autism Dev Disord 2008;38(1):41–51.CrossRefGoogle ScholarPubMed
Parmeggiani, A., Barcia, G., Posar, A., Raimondi, E., Santucci, M., Scaduto, M.C.Epilepsy and EEG paroxysmal abnormalities in autism spectrum disorders. Brain Dev 2010;32(9):783–789.CrossRefGoogle ScholarPubMed
Perry, A.R.C.Evidence-based practices for children and adolescents with Autism Spectrum Disorders: review of the literature and practice guide. Ontario: Childreńs Mental Health Ontario; 2003.Google Scholar
Renty, J.O., Roeyers, H.Quality of life in high-functioning adults with autism spectrum disorder: the predictive value of disability and support characteristics. Autism 2006;10(5):511–524.CrossRefGoogle ScholarPubMed
Roberts, J.A review of the research to identify the most effective models of best practice in the management of children with Autism Spectrum Disorders. Centre for the Developmental Disability Studies, University of Sidney; 2004.Google Scholar
Rosenberg, R.E., Mandell, D.S., Farmer, J.E., Law, J.K., Marvin, A.R., Law, P.A.Psychotropic medication use among children with autism spectrum disorders enrolled in a national registry, 2007–2008. J Autism Dev Disord 2010;40(3):342–351.CrossRefGoogle Scholar
Ruble, L.A., Heflinger, C.A., Renfrew, J.W., Saunders, R.C.Access and service use by children with autism spectrum disorders in Medicaid Managed Care. J Autism Dev Disord 2005;35(1):3–13.CrossRefGoogle ScholarPubMed
Saxena, S., Lora, A., van Ommeren, M., Barrett, T., Morris, J., Saraceno, B.WHO's Assessment Instrument for Mental Health Systems: collecting essential information for policy and service delivery. Psychiatr Serv 2007;58(6):816–821.CrossRefGoogle ScholarPubMed
Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., Baird, G.Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. J Am Acad Child Adolesc Psychiatry 2008;47(8):921–929.CrossRefGoogle Scholar
Vallejo, P., Ruiz-Sancho, A., Dominguez, M., Ayuso, M.J., Mendez, L., Romo, J.et al.Improving quality at the hospital psychiatric ward level through the use of the EFQM model. Int J Qual Health Care 2007;19(2):74–79.CrossRefGoogle ScholarPubMed
Volkmar, F., Cook, E.H. Jr., Pomeroy, J., Realmuto, G., Tanguay, P.Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. American Academy of Child and Adolescent Psychiatry Working Group on Quality Issues. J Am Acad Child Adolesc Psychiatry 1999;38(12 Suppl):32S–54S.CrossRefGoogle Scholar
Wille, N., Badia, X., Bonsel, G., Burstrom, K., Cavrini, G., Devlin, N.et al.Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Qual Life Res 2010;19(6):875–886.CrossRefGoogle ScholarPubMed
Submit a response

Comments

No Comments have been published for this article.