{"id":1671,"date":"2022-06-01T17:56:04","date_gmt":"2022-06-01T17:56:04","guid":{"rendered":"https:\/\/lab.research.sickkids.ca\/hayeems\/?page_id=1671"},"modified":"2024-03-04T20:44:11","modified_gmt":"2024-03-04T20:44:11","slug":"p-guide","status":"publish","type":"page","link":"https:\/\/lab.research.sickkids.ca\/hayeems\/p-guide\/","title":{"rendered":"Patient Outcomes: P-GUIDE\u2122"},"content":{"rendered":"

Patient-reported Genetic testing Utility InDEx (P-GUIDE)\u2122<\/h2><\/div>
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About P-GUIDE\u2122<\/h2><\/div>
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Understanding patient values and preferences is essential to patient-centred care and strong healthcare policy.\u00a0<\/span>\u00a0<\/span><\/p>\n

However, standardized ways of measuring the value of genetic testing from a patient\u2019s perspective are limited. To address this, we are using a robust measurement science approach to co-design P-GUIDE\u2122 with patient partners.\u202f<\/span>\u202f<\/span>\u00a0<\/span><\/p>\n

\u202f<\/span>In our <\/span>first phase<\/b><\/span> of development, P-GUIDE\u2122 will be oriented toward parents and caregivers of children who have undergone genetic testing.\u00a0<\/span>\u00a0<\/span><\/p>\n

Once P-GUIDE\u2122 has been validated, it can be used to determine the <\/span>personal utility<\/span><\/span><\/b> of genetic testing in a range of clinical settings. Evidence from these studies will be used to inform patient-centred care, policy decisions and funding recommendations.\u202f\u202f<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n<\/div><\/div><\/div>

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P-GUIDE\u2122 Adaptations<\/h2><\/div>
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How patients value genetic testing varies greatly, depending on the reason for testing, the type and the result of the testing, their age, and other aspects of their lived experiences.\u202f<\/span>\u202f<\/span><\/p>\n

\u202f<\/span>For example, how genetic testing is valued by pregnant individuals is likely to be different from how it is valued by parents and caregivers of children with cancer.\u202f<\/span>\u202f<\/span><\/p>\n

\u202f<\/span>Therefore, we are adapting P-GUIDE\u2122 to meet the unique needs of different patient populations.\u202f\u202f<\/span><\/p>\n

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