Evidence map›Paper›PMID 37975942›Full record

ArticleEuropean journal of pediatrics2024

Availability of psychological resources for parents receiving communication of positivity at newborn screening for metabolic diseases in Italy.

Marco Bani, Stefania Caviglia, Giulia Bensi, Mirsada Sarah Carcereri, Benedetta Greco, Elisa Lastrucci, Pamela Massa, Sofia Vissani, Chiara Cazzorla

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Article in European journal of pediatrics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
0.4field-weighted citation impact, top 37% 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

5 citing papers in PubMed, 2 citations in OpenAlex.

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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

9 authors at 7 institutions in 1 country.

Marco BaniSchool of Medicine and Surgery, University of Milano-Bicocca, via Cadore 48, 20900, Monza, Italy. marco.bani1@unimib.it.
Stefania CavigliaClinical Psychology Unit, Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
Giulia BensiPediatrics and Neonatology Unit and Pediatric Neuropsychiatric Unit, Guglielmo da Saliceto Hospital, Piacenza, Italy.
Mirsada Sarah CarcereriInherited Metabolic Diseases Unit and Regional Centre for Newborn Screening, Diagnosis and Treatment of Inherited Metabolic Diseases and Congenital Endocrine Diseases, Azienda Ospedaliera Universitaria Integrata, Verona, Italy.
Benedetta GrecoDivision of Metabolic Diseases, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
Elisa LastrucciIRCCS Meyer Children's University Hospital, Florence, Italy.
Pamela MassaDivision of Inherited Metabolic Diseases, Department of Diagnostic Services, Padua University Hospital, Padua, Italy.
Sofia VissaniPediatric Unit, Program of Pediatric Endocrinology, IRCCS Sant'Orsola-Malpighi University Hospital, University of Bologna, Bologna, Italy.
Chiara CazzorlaDivision of Inherited Metabolic Diseases, Department of Diagnostic Services, Padua University Hospital, Padua, Italy.
Bambino Gesù Children's Hospital · ITUniversity of Padua · ITAzienda Ospedaliera Universitaria Integrata Verona · ITGuglielmo da Saliceto Hospital · ITMeyer Children's Hospital · ITUniversity of Bologna · ITUniversity of Milano-Bicocca · IT

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Receiving information in the case of a positive or false-positive expanded newborn screening (ENBS) result for metabolic diseases is a stressful event. The availability of psychological support to families is crucial across the different communication steps and is recommended by different guidelines and position papers. However, more information is needed about the availability of psychological resources in the ENBS process. This national survey aimed to provide an overview of the availability of psychological resources for parents who received communication of positivity at the ENBS in the 23 Italian centers and how the support is provided to parents. An online survey was sent to the Heads of the ENBS centers asking about the availability of a clinical psychologist, their involvement in the ENBS process, and an estimation of parents receiving psychological support. More than 60% of the centers report having a clinical psychologist in the ENBS team; however, in more than 50% of cases, the psychologist does not participate in the consultation with parents (nor for the first consultation post-positivity or at confirmation of diagnosis). Furthermore, nearly 60% of the centers reported the experience of parental rejection of psychological sessions.  Conclusion: There is a need for harmonization among the Italian ENBS centers concerning the availability of psychological resources and how these resources are provided to families. Parents' needs remained only partially fulfilled. What is Known: • Receiving communication of positivity at the ENBS can be highly stressful for parents and requires adequate psychological support. • The guidelines recommend psychological support for parents during the ENBS process. What is New: • Only 14/23 (60.9%) of Italian ENBS centers have a clinical psychologist within the team. • In half of the consultations with parents receiving communication of positivity, the clinical psychologist is never involved.

Indexed as

Metabolic DiseasesNeonatal ScreeningCommunicationHumansInfant, NewbornItalyParentsExpanded newborn screeningMetabolic diseasesParental distressPsychological support

Identifiers

PMID37975942
OpenAlexW4388760292

What OpenQuestion holds

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Registered trials

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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.