دورية أكاديمية
Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study.
العنوان: | Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study. |
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المؤلفون: | Bon SBB; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands., Wouters RHP; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands., Hol JA; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands., Jongmans MCJ; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands.; Department of Genetics, University Medical Center Utrecht, Utrecht, The Netherlands.; Division of Child Health, UMCU-Wilhelmina's Children's Hospital, Utrecht, The Netherlands., van den Heuvel-Eibrink MM; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands.; Division of Child Health, UMCU-Wilhelmina's Children's Hospital, Utrecht, The Netherlands., Grootenhuis MA; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands.; Division of Child Health, UMCU-Wilhelmina's Children's Hospital, Utrecht, The Netherlands. |
المصدر: | Psycho-oncology [Psychooncology] 2022 Oct; Vol. 31 (10), pp. 1692-1699. Date of Electronic Publication: 2022 Aug 25. |
نوع المنشور: | Journal Article; Research Support, Non-U.S. Gov't |
اللغة: | English |
بيانات الدورية: | Publisher: Wiley Country of Publication: England NLM ID: 9214524 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1099-1611 (Electronic) Linking ISSN: 10579249 NLM ISO Abbreviation: Psychooncology Subsets: MEDLINE |
أسماء مطبوعة: | Original Publication: Chichester, W. Sussex, England : Wiley, c1992- |
مواضيع طبية MeSH: | Genetic Predisposition to Disease* , Kidney Neoplasms*/genetics, Child ; Child, Preschool ; Disclosure ; Female ; Humans ; Parents/psychology ; Qualitative Research |
مستخلص: | Objective: In pediatric oncology, large-scale genetic sequencing contributes to the identification of cancer predisposition, which can facilitate surveillance and family counseling. Our qualitative study explores families' motives, knowledge, and views regarding germline genetic sequencing to improve future counseling and support. Methods: Semi-structured interviews were conducted with parents of children with renal tumors participating in a national center, germline sequencing study. An inductive thematic analysis approach was used. Twenty nine parents participated, 17 mothers and 12 fathers. The median age of the affected children was 4 years. Results: Parents were generally positive about sequencing and reported a combination of individual and altruistic motives to participate. Some families counseled about sequencing shortly after cancer diagnosis felt overwhelmed. Many parents had difficulties distinguishing between panel and exome-wide analysis. Families in which no predisposition was identified felt reassured. Most families did not experience distress after a predisposition was disclosed, although sometimes stress following disclosure of a predisposition added to pre-existing (cancer-related) stress. Conclusions: Even though families reported positive experiences with germline genetic sequencing to detect cancer predisposition, timing of consent for sequencing as well as parents' understanding of genetic concepts can be further improved. (© 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.) |
References: | Eur J Cancer Care (Engl). 2018 Nov;27(6):e12877. (PMID: 30016002) J Clin Oncol. 2022 Jun 10;40(17):1892-1902. (PMID: 35230882) J Adolesc Young Adult Oncol. 2018 Jun;7(3):259-262. (PMID: 29336661) Eur J Hum Genet. 2016 Jan;24(1):21-9. (PMID: 25920556) Pediatr Blood Cancer. 2020 Feb;67(2):e28047. (PMID: 31736278) Genet Med. 2017 Mar;19(3):283-293. (PMID: 27584911) Cancer. 2015 Jan 15;121(2):286-93. (PMID: 25223899) Genet Med. 2016 Aug;18(8):755-62. (PMID: 26741411) Eur J Hum Genet. 2018 Apr;26(4):505-517. (PMID: 29379195) JAMA Oncol. 2016 May 01;2(5):616-624. (PMID: 26822237) J Clin Oncol. 2013 May 20;31(15):1842-8. (PMID: 23589552) J Genet Couns. 2018 Sep;27(5):1220-1227. (PMID: 29497922) Pediatr Blood Cancer. 2019 Aug;66(8):e27762. (PMID: 31006986) Pediatr Blood Cancer. 2021 Aug;68(8):e29101. (PMID: 34089211) Clin Genet. 2014 Feb;85(2):120-6. (PMID: 24033230) J Med Ethics. 2017 Aug;43(8):535-539. (PMID: 27888232) J Genet Couns. 2007 Dec;16(6):693-712. (PMID: 17694397) Clin Cancer Res. 2017 Jun 1;23(11):e1-e5. (PMID: 28572261) JCO Precis Oncol. 2017;1:. (PMID: 31886451) Genome Med. 2014 Sep 17;6(9):69. (PMID: 25317207) Hastings Cent Rep. 2019 May;49 Suppl 1:S2-S9. (PMID: 31268574) Front Genet. 2018 Dec 10;9:624. (PMID: 30619456) Genome Med. 2016 Dec 23;8(1):133. (PMID: 28007021) Nat Med. 2020 Nov;26(11):1684-1685. (PMID: 33077957) J Genet Couns. 2017 Aug;26(4):792-805. (PMID: 27987066) Pediatr Blood Cancer. 2015 Aug;62(8):1374-80. (PMID: 25832998) Patient. 2020 Jun;13(3):347-361. (PMID: 32037479) Eur J Pediatr. 2018 Jan;177(1):53-60. (PMID: 28929227) Psychooncology. 2022 Oct;31(10):1692-1699. (PMID: 35962481) |
فهرسة مساهمة: | Keywords: cancer; cancer predisposition; genetic counseling; informed consent; oncology; pediatric oncology; psycho-oncology |
تواريخ الأحداث: | Date Created: 20220813 Date Completed: 20221011 Latest Revision: 20230104 |
رمز التحديث: | 20231215 |
مُعرف محوري في PubMed: | PMC9804506 |
DOI: | 10.1002/pon.6016 |
PMID: | 35962481 |
قاعدة البيانات: | MEDLINE |
تدمد: | 1099-1611 |
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DOI: | 10.1002/pon.6016 |