Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia
Patient-reported outcomes (PROs) and PRO measures (PROMs) are often used to help clinicians and researchers understand patients’ personal concerns, feelings, experiences, and perspectives following the implementation of an intervention. Notably, PROs and PROMs can inform health systems, health polic...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
| Published: |
Advocate Aurora Health
2021-10-01
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| Series: | Journal of Patient-Centered Research and Reviews |
| Subjects: | |
| Online Access: | https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1823&context=jpcrr |
| _version_ | 1797936644125360128 |
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| author | Rachele M. Hendricks-Sturrup Robert Block Christine Y. Lu |
| author_facet | Rachele M. Hendricks-Sturrup Robert Block Christine Y. Lu |
| author_sort | Rachele M. Hendricks-Sturrup |
| collection | DOAJ |
| description | Patient-reported outcomes (PROs) and PRO measures (PROMs) are often used to help clinicians and researchers understand patients’ personal concerns, feelings, experiences, and perspectives following the implementation of an intervention. Notably, PROs and PROMs can inform health systems, health policy, and payers on the utility of clinical genetic testing based on each patient’s personal values, perspectives, and potential health behaviors subsequent to testing. In this topic synopsis, we discuss the underexplored role of and implications for PROs and PROMs following genetic testing for familial hypercholesterolemia (FH), an autosomal dominant genetic disorder of cholesterol metabolism that can lead to highly premature fatal and nonfatal myocardial infarction and stroke. We also discuss why the use and consideration of patient perspectives, via PROs and PROMs, are critical to the process of optimizing patient care across various FH treatment contexts. As expert clinician groups consider the latest evidence when establishing recommendations for FH genetic testing, there is a ripe opportunity for clinicians and researchers to explore the value and utility of PROs to inform and possibly improve care for patients diagnosed with FH. |
| first_indexed | 2024-04-10T18:32:31Z |
| format | Article |
| id | doaj.art-ded3938e8391437c919219b137d33bd9 |
| institution | Directory Open Access Journal |
| issn | 2330-0698 |
| language | English |
| last_indexed | 2024-04-10T18:32:31Z |
| publishDate | 2021-10-01 |
| publisher | Advocate Aurora Health |
| record_format | Article |
| series | Journal of Patient-Centered Research and Reviews |
| spelling | doaj.art-ded3938e8391437c919219b137d33bd92023-02-02T03:17:37ZengAdvocate Aurora HealthJournal of Patient-Centered Research and Reviews2330-06982021-10-018433633910.17294/2330-0698.1823Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial HypercholesterolemiaRachele M. Hendricks-Sturrup0Robert Block1Christine Y. Lu2Harvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MAUniversity of Rochester Medical Center, Rochester, NYHarvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MAPatient-reported outcomes (PROs) and PRO measures (PROMs) are often used to help clinicians and researchers understand patients’ personal concerns, feelings, experiences, and perspectives following the implementation of an intervention. Notably, PROs and PROMs can inform health systems, health policy, and payers on the utility of clinical genetic testing based on each patient’s personal values, perspectives, and potential health behaviors subsequent to testing. In this topic synopsis, we discuss the underexplored role of and implications for PROs and PROMs following genetic testing for familial hypercholesterolemia (FH), an autosomal dominant genetic disorder of cholesterol metabolism that can lead to highly premature fatal and nonfatal myocardial infarction and stroke. We also discuss why the use and consideration of patient perspectives, via PROs and PROMs, are critical to the process of optimizing patient care across various FH treatment contexts. As expert clinician groups consider the latest evidence when establishing recommendations for FH genetic testing, there is a ripe opportunity for clinicians and researchers to explore the value and utility of PROs to inform and possibly improve care for patients diagnosed with FH.https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1823&context=jpcrrpatient-reported outcomesgenetic testingfamilial hypercholesterolemiaimplementation sciencecardiovascular disease |
| spellingShingle | Rachele M. Hendricks-Sturrup Robert Block Christine Y. Lu Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia Journal of Patient-Centered Research and Reviews patient-reported outcomes genetic testing familial hypercholesterolemia implementation science cardiovascular disease |
| title | Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia |
| title_full | Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia |
| title_fullStr | Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia |
| title_full_unstemmed | Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia |
| title_short | Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia |
| title_sort | integrating patient reported outcomes into clinical genetic testing for familial hypercholesterolemia |
| topic | patient-reported outcomes genetic testing familial hypercholesterolemia implementation science cardiovascular disease |
| url | https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1823&context=jpcrr |
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