Literature DB >> 22592952

Treatments for neurodevelopmental disorders: evidence, advocacy, and the Internet.

Nina C Di Pietro1, Louise Whiteley, Ania Mizgalewicz, Judy Illes.   

Abstract

The Internet is a major source of health-related information for parents of sick children despite concerns surrounding quality. For neurodevelopmental disorders, the websites of advocacy groups are a largely unexamined source of information. We evaluated treatment information posted on nine highly-trafficked advocacy websites for autism, cerebral palsy, and fetal alcohol spectrum disorder. We found that the majority of claims about treatment safety and efficacy were unsubstantiated. Instead, a range of rhetorical strategies were used to imply scientific support. When peer-reviewed publications were cited, 20 % were incorrect or irrelevant. We call for new partnerships between advocacy and experts in developmental disorders to ensure better accuracy and higher transparency about how treatment information is selected and evidenced on advocacy websites.

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Mesh:

Year:  2013        PMID: 22592952     DOI: 10.1007/s10803-012-1551-7

Source DB:  PubMed          Journal:  J Autism Dev Disord        ISSN: 0162-3257


  48 in total

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Review 3.  Complementary and alternative medicine in autism: an evidence-based approach to negotiating safe and efficacious interventions with families.

Authors:  R Scott Akins; Kathy Angkustsiri; Robin L Hansen
Journal:  Neurotherapeutics       Date:  2010-07       Impact factor: 7.620

4.  Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder.

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Journal:  J Autism Dev Disord       Date:  2007-04

5.  Internet health information use and e-mail access by parents attending a paediatric emergency department.

Authors:  R D Goldman; A Macpherson
Journal:  Emerg Med J       Date:  2006-05       Impact factor: 2.740

6.  Medicine. Stalled trial for autism highlights dilemma of alternative treatments.

Authors:  Erik Stokstad
Journal:  Science       Date:  2008-07-18       Impact factor: 47.728

7.  Chelation therapy trials halted.

Authors:  Mike Mitka
Journal:  JAMA       Date:  2008-11-19       Impact factor: 56.272

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Authors:  C Tuffrey; F Finlay
Journal:  Arch Dis Child       Date:  2002-12       Impact factor: 3.791

9.  Health information seeking by parents in the Internet age.

Authors:  Kaylyn Khoo; Penny Bolt; Franz E Babl; Susan Jury; Ran D Goldman
Journal:  J Paediatr Child Health       Date:  2008 Jul-Aug       Impact factor: 1.954

Review 10.  Complementary and alternative medicine treatments for children with autism spectrum disorders.

Authors:  Susan E Levy; Susan L Hyman
Journal:  Child Adolesc Psychiatr Clin N Am       Date:  2008-10
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  5 in total

Review 1.  Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE): Proposed DSM-5 Diagnosis.

Authors:  Julie A Kable; Mary J O'Connor; Heather Carmichael Olson; Blair Paley; Sarah N Mattson; Sally M Anderson; Edward P Riley
Journal:  Child Psychiatry Hum Dev       Date:  2016-04

2.  Googling for Neurological Disorders: From Seeking Health-Related Information to Patient Empowerment, Advocacy, and Open, Public Self-Disclosure in the Neurology 2.0 Era.

Authors:  Mariano Martini; Nicola Luigi Bragazzi
Journal:  J Med Internet Res       Date:  2021-03-26       Impact factor: 5.428

3.  Choice and Trade-offs: Parent Decision Making for Neurotechnologies for Pediatric Drug-Resistant Epilepsy.

Authors:  Viorica Hrincu; Patrick J McDonald; Mary B Connolly; Mark J Harrison; George M Ibrahim; Robert P Naftel; Winston Chiong; Armaghan Alam; Urs Ribary; Judy Illes
Journal:  J Child Neurol       Date:  2021-06-02       Impact factor: 1.987

Review 4.  Management of children with autism spectrum disorder in the dental setting: concerns, behavioural approaches and recommendations.

Authors:  Konstantina Delli; Peter A Reichart; Michael M Bornstein; Christos Livas
Journal:  Med Oral Patol Oral Cir Bucal       Date:  2013-11-01

5.  Age at diagnosis of autism spectrum disorders: is there an association with socioeconomic status and family self-education about autism?

Authors:  Michal Hrdlicka; Maria Vacova; Hana Oslejskova; Veronika Gondzova; Iveta Vadlejchova; Jana Kocourkova; Jiri Koutek; Iva Dudova
Journal:  Neuropsychiatr Dis Treat       Date:  2016-07-06       Impact factor: 2.570

  5 in total

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