دورية أكاديمية
أعرض في EDS

Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study.

التفاصيل البيبلوغرافية
العنوان: Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study.
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.)
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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
الوصف
تدمد:1099-1611
DOI:10.1002/pon.6016