Evidence map›Paper›PMID 29204812›Full record

ArticleJournal of genetic counseling2018

Tumor Screening in Beckwith-Wiedemann Syndrome: Parental Perspectives.

Kelly A Duffy, Katheryn L Grand, Kristin Zelley, Jennifer M Kalish

Open access · greenAbstract read
In one paragraph

Article in Journal of genetic counseling, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed, 2 pooled it
2.6field-weighted citation impact, top 10% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed, 2 syntheses or guidelines pooled it, 24 citations in OpenAlex.

  1. Guideline
  2. Guideline
  3. Review
  4. Article
  5. Update on Surveillance for Wilms Tumor and Hepatoblastoma in Beckwith-Wiedemann Syndrome and Other Predisposition Syndromes.Clinical cancer research : an official journal of the American Association for Cancer Research · 2024
    Review
  6. Article
  7. Universal newborn genetic screening for pediatric cancer predisposition syndromes: model-based insights.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
    Article
  8. Article
  9. Review
  10. Review
  11. Review
  12. Article
  13. Review
  14. Article
  15. Review
  16. Article
  17. Reply to Brioude et al.European journal of human genetics : EJHG · 2018
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors at 1 institution in 1 country.

Kelly A DuffyThe Division of Human Genetics, Children's Hospital of Philadelphia, 3028 Colket Translational Research Building, 3501 Civic Center Blvd, Philadelphia, PA, 19104, USA.
Katheryn L GrandThe Division of Human Genetics, Children's Hospital of Philadelphia, 3028 Colket Translational Research Building, 3501 Civic Center Blvd, Philadelphia, PA, 19104, USA.
Kristin ZelleyThe Division of Human Genetics, Children's Hospital of Philadelphia, 3028 Colket Translational Research Building, 3501 Civic Center Blvd, Philadelphia, PA, 19104, USA.
Jennifer M KalishThe Division of Human Genetics, Children's Hospital of Philadelphia, 3028 Colket Translational Research Building, 3501 Civic Center Blvd, Philadelphia, PA, 19104, USA. kalishj@email.chop.edu.ORCID 0000-0003-1500-9713
Children's Hospital of Philadelphia · US

Funding

The Mechanism of Tumor Formation in Beckwith-Wiedemann SyndromeK08CA193915 · NCI · CHILDREN'S HOSP OF PHILADELPHIA · PI KALISH, JENNIFER MELISSA · 2015 to 2019
$703k
NCI NIH HHS K08 CA193915
6 · The paper itself

Abstract

Children with Beckwith-Wiedemann Syndrome (BWS) and Isolated Hemihypertrophy (IHH) are at an increased risk for developing tumors. Tumor screening in this population is currently being reassessed by several groups and the effect on patients and patient-families has been argued both as a reason to screen and not to screen. Parental perspectives on this topic have never been systematically addressed for the BWS population. Here, we conducted a parent-based survey to evaluate knowledge and attitudes toward tumor screening in patients affected by BWS/IHH. A total of 261 surveys were completed. Overall, parents reported that screening decreased their worry and did not feel that screening increased worry or created a burden. This effect was observed across various demographic variables and other factors examined. Almost all significant differences observed could be attributed to parental knowledge of tumor risk. Parents who correctly identified their child's tumor risk were more likely to agree with stratified screening recommendations according to BWS type and risk, and were less likely to feel worried if recommendations were changed. These results highlight the need to educate families about their child's genetic type and tumor risk in order to facilitate an informed decision about tumor screening.

Indexed as

Attitude to HealthBeckwith-Wiedemann SyndromeChildCross-Sectional StudiesEarly Detection of CancerFemaleHumansMaleMass ScreeningParent-Child RelationsParentsRegistriesBeckwith-Wiedemann syndromeCancer predispositionTumor screening

Identifiers

PMID29204812
PMCPMC5986606
OpenAlexW2771980658

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.