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19.05.2022 | Original Article

Social media communities for patients and families affected by congenital pediatric surgical conditions

verfasst von: Marina L. Reppucci, Luis De La Torre, Kaci Pickett, Lea Wehrli, Margo M. Nolan, Jill Ketzer, Andrea Bischoff

Erschienen in: Pediatric Surgery International | Ausgabe 7/2022

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Abstract

Background

Social media has become a means to allow individuals affected by rare diseases to connect with others. This study aimed to characterize the use of three popular social media platforms by individuals affected by common pediatric surgery index conditions.

Methods

A systematic search of Instagram, Facebook, and Twitter was performed using standardized terms for the following pediatric surgical conditions: anorectal malformation, biliary atresia, bronchopulmonary sequestration, congenital diaphragmatic hernia (CDH), congenital pulmonary airway malformation, duodenal atresia, esophageal atresia/tracheoesophageal fistula (EA/TEF), gastroschisis, Hirschsprung disease (HD), and omphalocele. Accounts active within the last year were analyzed and assessed.

Results

A total of 666 accounts were identified. Instagram was the most common platform, but accounts dedicated to support and story sharing were most common on Facebook. Biliary atresia and CDH had the largest communities identified. Support groups were most common among those dedicated to EA/TEF (43.3%, p < 0.001). Most accounts were created by parents, but accounts dedicated to HD had the greatest proportion founded by patients (22.4%, p = 0.04).

Conclusions

Social media use is common among patients and families affected by congenital surgical conditions. Certain diseases have larger communities and support networks. Knowledge about their existence may allow surgeons to direct patients towards supportive communities and resources.

Level of evidence

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Titel: Social media communities for patients and families affected by congenital pediatric surgical conditions
verfasst von: Marina L. Reppucci
Luis De La Torre
Kaci Pickett
Lea Wehrli
Margo M. Nolan
Jill Ketzer
Andrea Bischoff
Publikationsdatum: 19.05.2022
Verlag: Springer Berlin Heidelberg
Erschienen in: Pediatric Surgery International / Ausgabe 7/2022
Print ISSN: 0179-0358
Elektronische ISSN: 1437-9813
DOI: https://doi.org/10.1007/s00383-022-05139-6

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Die Highlights vom Kongress des American College of Cardiology 2024

Springer Medizin

Social media communities for patients and families affected by congenital pediatric surgical conditions

Abstract

Background

Methods

Results

Conclusions

Level of evidence

Neu im Fachgebiet Pädiatrie

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Betalaktam-Allergie: praxisnahes Vorgehen beim Delabeling

Update Pädiatrie

Die Highlights vom Kongress des American College of Cardiology 2024

Springer Medizin

Abstract

Background

Methods

Results

Conclusions

Level of evidence

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