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Understanding of and attitudes to genetic testing for inherited retinal disease: a patient perspective.

Willis TA, Potrata B, Ahmed M, Hewison J, Gale R, Downey L, McKibbin M - Br J Ophthalmol (2013)

Bottom Line: Subgroup analyses revealed differences associated with participant age, gender, education level and ethnicity (p<0.02).Participants reported a range of perceived benefits (eg, family planning, access to treatment) and risks (eg, impact upon family relationships, emotional consequences).Support was stronger for diagnostic and predictive testing than for testing as part of reproductive planning.

View Article: PubMed Central - PubMed

Affiliation: Leeds Institute of Health Sciences, University of Leeds, UK.

ABSTRACT

Background/aims: The views of people with inherited retinal disease are important to help develop health policy and plan services. This study aimed to record levels of understanding of and attitudes to genetic testing for inherited retinal disease, and views on the availability of testing.

Methods: Telephone questionnaires comprising quantitative and qualitative items were completed with adults with inherited retinal disease. Participants were recruited via postal invitation (response rate 48%), approach at clinic or newsletters of relevant charitable organisations.

Results: Questionnaires were completed with 200 participants. Responses indicated that participants' perceived understanding of genetic testing for inherited retinal disease was variable. The majority (90%) considered testing to be good/very good and would be likely to undergo genetic testing (90%) if offered. Most supported the provision of diagnostic (97%) and predictive (92%) testing, but support was less strong for testing as part of reproductive planning. Most (87%) agreed with the statement that testing should be offered only after the individual has received genetic counselling from a professional. Subgroup analyses revealed differences associated with participant age, gender, education level and ethnicity (p<0.02). Participants reported a range of perceived benefits (eg, family planning, access to treatment) and risks (eg, impact upon family relationships, emotional consequences).

Conclusions: Adults with inherited retinal disease strongly support the provision of publicly funded genetic testing. Support was stronger for diagnostic and predictive testing than for testing as part of reproductive planning.

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Related in: MedlinePlus

Participant understanding of, attitude to and willingness to undergo genetic testing for inherited retinal disease.
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BJOPHTHALMOL2013303434F1: Participant understanding of, attitude to and willingness to undergo genetic testing for inherited retinal disease.

Mentions: Responses to the Likert scale items are presented in figure 1. Overall, the level of self-reported understanding about genetic testing was variable: 33% of the sample reported that they had no or little understanding, while 41% perceived themselves to have a high level of understanding (figure 1; illustrative quotations are provided in box 1). Participants educated to college-level or beyond reported a greater level of understanding than those with lower educational attainment (p=0.019). Attitudes towards genetic testing for inherited eye disease were largely positive: 90% considered testing to be good/very good. Responses to the third Likert scale item (concerning willingness to undergo testing) were similarly positive, with 90% being likely/very likely to undergo genetic testing. Responses to these items did not differ significantly across subgroups. Participant views of potential benefits and risks of genetic testing are illustrated in boxes 2 and 3.Box 1Understanding of genetic testing


Understanding of and attitudes to genetic testing for inherited retinal disease: a patient perspective.

Willis TA, Potrata B, Ahmed M, Hewison J, Gale R, Downey L, McKibbin M - Br J Ophthalmol (2013)

Participant understanding of, attitude to and willingness to undergo genetic testing for inherited retinal disease.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC3756432&req=5

BJOPHTHALMOL2013303434F1: Participant understanding of, attitude to and willingness to undergo genetic testing for inherited retinal disease.
Mentions: Responses to the Likert scale items are presented in figure 1. Overall, the level of self-reported understanding about genetic testing was variable: 33% of the sample reported that they had no or little understanding, while 41% perceived themselves to have a high level of understanding (figure 1; illustrative quotations are provided in box 1). Participants educated to college-level or beyond reported a greater level of understanding than those with lower educational attainment (p=0.019). Attitudes towards genetic testing for inherited eye disease were largely positive: 90% considered testing to be good/very good. Responses to the third Likert scale item (concerning willingness to undergo testing) were similarly positive, with 90% being likely/very likely to undergo genetic testing. Responses to these items did not differ significantly across subgroups. Participant views of potential benefits and risks of genetic testing are illustrated in boxes 2 and 3.Box 1Understanding of genetic testing

Bottom Line: Subgroup analyses revealed differences associated with participant age, gender, education level and ethnicity (p<0.02).Participants reported a range of perceived benefits (eg, family planning, access to treatment) and risks (eg, impact upon family relationships, emotional consequences).Support was stronger for diagnostic and predictive testing than for testing as part of reproductive planning.

View Article: PubMed Central - PubMed

Affiliation: Leeds Institute of Health Sciences, University of Leeds, UK.

ABSTRACT

Background/aims: The views of people with inherited retinal disease are important to help develop health policy and plan services. This study aimed to record levels of understanding of and attitudes to genetic testing for inherited retinal disease, and views on the availability of testing.

Methods: Telephone questionnaires comprising quantitative and qualitative items were completed with adults with inherited retinal disease. Participants were recruited via postal invitation (response rate 48%), approach at clinic or newsletters of relevant charitable organisations.

Results: Questionnaires were completed with 200 participants. Responses indicated that participants' perceived understanding of genetic testing for inherited retinal disease was variable. The majority (90%) considered testing to be good/very good and would be likely to undergo genetic testing (90%) if offered. Most supported the provision of diagnostic (97%) and predictive (92%) testing, but support was less strong for testing as part of reproductive planning. Most (87%) agreed with the statement that testing should be offered only after the individual has received genetic counselling from a professional. Subgroup analyses revealed differences associated with participant age, gender, education level and ethnicity (p<0.02). Participants reported a range of perceived benefits (eg, family planning, access to treatment) and risks (eg, impact upon family relationships, emotional consequences).

Conclusions: Adults with inherited retinal disease strongly support the provision of publicly funded genetic testing. Support was stronger for diagnostic and predictive testing than for testing as part of reproductive planning.

Show MeSH
Related in: MedlinePlus