Development of an interactive computer-assisted instruction (ICAI) program for patient prenatal genetic screening and carrier testing for use in clinical settings

Griffith, Jennifer M.; Sorenson, James R.; Jennings-Grant, Tracey; Fowler, Beth

doi:10.1016/j.pec.2004.11.007

Cited by 8 publications

(4 citation statements)

References 3 publications

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“…A total of 10 studies were randomized controlled trials (RCT), the remainder being descriptive/usability studies (40,44,47,49,50). The most common design (five studies) compared conventional GC alone to GC used with an e-tool; (51)(52)(53)(54)(55)(56)(57) three studies compared counselling by another health care professional (HCP) alone to counselling plus an e-tool (44,49,50,58). Two studies performed a direct comparison between GC and an e-tool (39,42,43).…”

Section: Summary Of Study Designsmentioning

confidence: 99%

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Birch

2014

Clinical Genetics

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In-person genetic counselling (GC) is the model typically used to provide patients with information regarding their genetic testing options. Current and emerging demand for genetic testing may overburden the health care system and exceed the available numbers of genetic counsellors. Furthermore, GC is not always available at times and places convenient for patients. There is little evidence that the in-person model alone is always optimal and alternatives to in-person GC have been studied in genetics and other areas of health care. This review summarizes the published evidence between 1994 and March 2014 for interactive e-learning and decisional support e-tools that could be used in pre-test GC. A total of 21 papers from 15 heterogeneous studies of interactive e-learning tools, with or without decision aids, were reviewed. Study populations, designs, and outcomes varied widely but most used an e-tool as an adjunct to conventional GC. Knowledge acquisition and decisional comfort were achieved and the e-tools were generally well-accepted by users. In a time when health care budgets are constrained and availability of GC is limited, research is needed to determine the specific circumstances in which e-tools might replace or supplement some of the functions of genetic counsellors.

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Section: Summary Of Study Designsmentioning

confidence: 99%

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Birch

2014

Clinical Genetics

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“…Screening organisations should evaluate the possible use of interactive computer assisted delivery of information for the release of initial or pre-test information, many of which are currently under development (e.g., http://comex.presentation.it/, [82,83]). …”

Section: Communicationmentioning

confidence: 99%

Benchmarks for Cystic Fibrosis carrier screening: A European consensus document

Castellani

Maçek

Cassiman

et al. 2010

Journal of Cystic Fibrosis

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This paper presents an overview of the conclusions from an international conference convened to address current issues related to the provision of Cystic Fibrosis carrier screening within Europe. Consensus was not aimed at stating whether such a programme should be implemented. Instead the focus was to provide a framework for countries and agencies who are considering or planning its establishment. The general principles and target population of Cystic Fibrosis carrier screening, advantages and disadvantages, health economics, monitoring and future evaluative and research directions were covered. A range of screening strategies have been assessed and compared: pre-conceptional and prenatal screening; individual and couple screening; sequential and simultaneous sampling or testing. Furthermore, technical issues were examined with respect to the choice of the panel of mutations, its detection rate, sensitivity, management of intermediate 'at-risk' couples, screening approach to different populations and ethnic minorities, and assurance of laboratory quality control. The consensus statement also aims to establish the benchmarks for communicating with health care providers, the general public and potential and actual participants before and after the genetic test.

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“…However, these educational materials are limited in their scope, they often do not include sufficient information to meet the requirements of informed consent, and they do not allow interaction with the end user [Shepperd et al, 2006]. Interactive computer‐based programs (IC) may potentially be an excellent alternative [Griffith et al, 2005a,b]. Specifically designed software can help individuals understand risk, learn about options, clarify values, and examine the consequences of their decisions [Meilleur and Littleton‐Kearney, 2009].…”

Section: Introductionmentioning

confidence: 99%

An interactive computer program can effectively educate potential users of cystic fibrosis carrier tests

et al. 2011

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The demand for cystic fibrosis (CF) carrier testing is steadily growing, not only from individuals with raised a priori carrier risk, but also from the general population. This trend will likely exceed the availability of genetic counselors, making it impossible to provide standard face-to-face genetic counseling to all those asking for the test. In order to reduce the time needed to educate individuals on the basics of the disease, its genetic transmission, and carrier testing peculiarities, we developed an educational method based on an interactive computer program (IC). To assess the effectiveness of this program and to compare it to a classical genetic counseling session, we conducted a comparative trial. In a population setting of people undergoing assisted reproduction, 44 individuals were randomly assigned to either receiving standard one-on-one genetic counseling or education by the IC program. We measured pre- and post-intervention knowledge about CF genetic transmission and carrier testing. Starting from an equivalent baseline of correct answers to a specially designed multiple-choice questionnaire (47% in the counselor group and 45% in the computer group) both groups showed a highly significant and similar increase (reaching 84% in the counselor group and 85% in the computer group). The computer program under evaluation can successfully educate individuals considering genetic testing for CF.

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Development of an interactive computer-assisted instruction (ICAI) program for patient prenatal genetic screening and carrier testing for use in clinical settings

Cited by 8 publications

References 3 publications

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Benchmarks for Cystic Fibrosis carrier screening: A European consensus document

An interactive computer program can effectively educate potential users of cystic fibrosis carrier tests

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