The Parent PrU : A measure to assess personal utility of pediatric genomic results
Copyright © 2023 American College of Medical Genetics and Genomics. Published by Elsevier Inc. All rights reserved..
PURPOSE: We aimed to adapt and validate an existing patient-reported outcome measure, the personal-utility (PrU) scale, for use in the pediatric genomic context.
METHODS: We adapted the adult version of the PrU and obtained feedback from 6 parents whose child had undergone sequencing. The resulting measure, the Parent PrU, was administered to parents of children in 4 pediatric cohorts of the Clinical Sequencing Evidence-Generating Research consortium after they received their children's genomic results. We investigated the measure's structural validity and internal consistency.
RESULTS: We conducted a principal-axis factor analysis with oblimin rotation on data from 755 participants to determine structural validity. These analyses yielded a 3-factor solution, accounting for 76% of the variance in the 16 items. We used Cronbach's α to assess the internal consistency of each factor: (1) child benefits (α = .95), (2) affective parent benefits (α = .90), and (3) parent control (α = .94).
CONCLUSION: Our evidence suggests that the Parent PrU scale has potential as a measure for assessing parent-reported personal utility of their children's genomic results. Additional research is needed to further validate the Parent PrU scale, including by comparing its findings with utility assessments reported by clinicians and children themselves.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2024 |
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| Erschienen: |
2024 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:26 |
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| Enthalten in: |
Genetics in medicine : official journal of the American College of Medical Genetics - 26(2024), 1 vom: 20. Jan., Seite 100994 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Turbitt, Erin [VerfasserIn] |
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| Links: |
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| Themen: |
Health services evaluation |
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| Anmerkungen: |
Date Completed 08.01.2024 Date Revised 07.02.2024 published: Print-Electronic Citation Status MEDLINE |
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| doi: |
10.1016/j.gim.2023.100994 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM363318003 |
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| 245 | 1 | 4 | |a The Parent PrU |b A measure to assess personal utility of pediatric genomic results |
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| 500 | |a Date Revised 07.02.2024 | ||
| 500 | |a published: Print-Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a Copyright © 2023 American College of Medical Genetics and Genomics. Published by Elsevier Inc. All rights reserved. | ||
| 520 | |a PURPOSE: We aimed to adapt and validate an existing patient-reported outcome measure, the personal-utility (PrU) scale, for use in the pediatric genomic context | ||
| 520 | |a METHODS: We adapted the adult version of the PrU and obtained feedback from 6 parents whose child had undergone sequencing. The resulting measure, the Parent PrU, was administered to parents of children in 4 pediatric cohorts of the Clinical Sequencing Evidence-Generating Research consortium after they received their children's genomic results. We investigated the measure's structural validity and internal consistency | ||
| 520 | |a RESULTS: We conducted a principal-axis factor analysis with oblimin rotation on data from 755 participants to determine structural validity. These analyses yielded a 3-factor solution, accounting for 76% of the variance in the 16 items. We used Cronbach's α to assess the internal consistency of each factor: (1) child benefits (α = .95), (2) affective parent benefits (α = .90), and (3) parent control (α = .94) | ||
| 520 | |a CONCLUSION: Our evidence suggests that the Parent PrU scale has potential as a measure for assessing parent-reported personal utility of their children's genomic results. Additional research is needed to further validate the Parent PrU scale, including by comparing its findings with utility assessments reported by clinicians and children themselves | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Health services evaluation | |
| 650 | 4 | |a Parent benefits | |
| 650 | 4 | |a Patient-reported outcome measure | |
| 650 | 4 | |a Perceived value | |
| 650 | 4 | |a Psychometrics | |
| 700 | 1 | |a Kohler, Jennefer N |e verfasserin |4 aut | |
| 700 | 1 | |a Brothers, Kyle B |e verfasserin |4 aut | |
| 700 | 1 | |a Outram, Simon M |e verfasserin |4 aut | |
| 700 | 1 | |a Rini, Christine |e verfasserin |4 aut | |
| 700 | 1 | |a Sahin-Hodoglugil, Nuriye |e verfasserin |4 aut | |
| 700 | 1 | |a Leo, Michael C |e verfasserin |4 aut | |
| 700 | 1 | |a Biesecker, Barbara B |e verfasserin |4 aut | |
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