Literature DB >> 23039041

Providing predictive testing for Huntington disease via telehealth: results of a pilot study in British Columbia, Canada.

A K Hawkins1, S Creighton, A Ho, B McManus, M R Hayden.   

Abstract

Predictive testing (PT) for Huntington disease (HD) usually requires several in-person appointments which acts as a barrier to testing for those from remote regions. This pilot study reports the use of telehealth PT to examine whether such telehealth testing improves access to HD PT while maintaining quality of care and support. Individuals underwent PT via the telehealth protocol or standard in-person protocol and were asked to complete surveys regarding their experience. Results reveal no significant differences between the in-person-tested and telehealth-tested groups with respect to quality of care, information, counselling and support. The majority of participants in both groups stated that pre-test counselling had provided them with sufficient knowledge about the advantages and disadvantages of undergoing testing, the opportunity to ask questions, and the ability to make an informed decision. The majority of participants in both groups were satisfied by the manner in which results were delivered and stated they had received sufficient information regarding the implications of these results. This study reveals that telehealth PT improves access while maintaining quality of care and support.
© 2012 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Entities:  

Mesh:

Year:  2012        PMID: 23039041     DOI: 10.1111/cge.12033

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  8 in total

Review 1.  The Promise of Telemedicine for Movement Disorders: an Interdisciplinary Approach.

Authors:  H Ben-Pazi; P Browne; P Chan; E Cubo; M Guttman; A Hassan; J Hatcher-Martin; Z Mari; E Moukheiber; N U Okubadejo; A Shalash
Journal:  Curr Neurol Neurosci Rep       Date:  2018-04-13       Impact factor: 5.081

2.  Telegenetics use in presymptomatic genetic counselling: patient evaluations on satisfaction and quality of care.

Authors:  Ellen Otten; Erwin Birnie; Adelita V Ranchor; Irene M van Langen
Journal:  Eur J Hum Genet       Date:  2015-07-15       Impact factor: 4.246

3.  Telegenetics: an Update on Availability and Use of Telemedicine in Clinical Genetics Service.

Authors:  Irena Vrečar; Dimitar Hristovski; Borut Peterlin
Journal:  J Med Syst       Date:  2016-12-17       Impact factor: 4.460

Review 4.  Genetic testing for neurodegenerative diseases: Ethical and health communication challenges.

Authors:  J Scott Roberts; Anne K Patterson; Wendy R Uhlmann
Journal:  Neurobiol Dis       Date:  2020-04-14       Impact factor: 5.996

5.  Patients' and professionals' perspective of non-in-person visits in hereditary cancer: predictors and impact of the COVID-19 pandemic.

Authors:  Adrià López-Fernández; Guillermo Villacampa; Elia Grau; Mónica Salinas; Esther Darder; Estela Carrasco; Sara Torres-Esquius; Silvia Iglesias; Ares Solanes; Neus Gadea; Angela Velasco; Gisela Urgell; Maite Torres; Noemí Tuset; Joan Brunet; Sergi Corbella; Judith Balmaña
Journal:  Genet Med       Date:  2021-04-06       Impact factor: 8.822

Review 6.  Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review.

Authors:  Ashley Crook; Chris Jacobs; Toby Newton-John; Rosie O'Shea; Alison McEwen
Journal:  J Neurol       Date:  2021-03-01       Impact factor: 6.682

7.  Far and wide: Exploring provider utilization of remote service provision for genome-wide sequencing in Canada.

Authors:  Emily A Enns; Tasha Wainstein; Nick Dragojlovic; Nicola Kopac; Larry D Lynd; Alison M Elliott
Journal:  Mol Genet Genomic Med       Date:  2021-09-17       Impact factor: 2.183

8.  Telemedicine for Hyperkinetic Movement Disorders.

Authors:  Ragini Srinivasan; Hilla Ben-Pazi; Marieke Dekker; Esther Cubo; Bas Bloem; Emile Moukheiber; Josefa Gonzalez-Santos; Mark Guttman
Journal:  Tremor Other Hyperkinet Mov (N Y)       Date:  2020-02-17
  8 in total

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