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Pediatric Surgery International

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Open Access 01-01-2020 | Diaphragmatic Hernia | Original Article

Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey

Authors: Beverley Power, Soichi Shibuya, Brenda Lane, Simon Eaton, Paolo De Coppi

Published in: Pediatric Surgery International | Issue 1/2020

Abstract

Background

CDH UK is a registered charity governed by a volunteer committee and providing informal support to patients, families and healthcare workers affected directly or indirectly with congenital diaphragmatic hernia (CDH) internationally. This is the first patient-led survey undertaken by CDH UK aiming for highlighting the feeding problems and their impact on the daily life of CDH survivors.

Methods

Answers from CDH survivors were collected through an online questionnaire (SurveyMonkey^®) undertaken by CDH UK. The questionnaire contained questions about their feeding problems and support they were receiving for it.

Main results

Overall, 151 patients answered some parts of the survey and 102 patients completed the questionnaire. Overall, 116 (76.8%) responders reported suffering from any type of feeding issue. Gastric acid reflux (GER) and growth retardation were the commonest symptoms experienced by 97 (91.5%) and 72 (62.2%) responders, respectively. Only 18 (17.0%) responders have received any written information on feeding or details of patient/parent support. Eighty (75.5%) responders are satisfied with the level of support they are receiving, but 78 (76.4%) answered that the whole experience associated with the disease has been very or extremely stressful.

Conclusions

CDH survivors frequently have various issues with feeding, which may not be adequately supported or discussed clinically. It is desirable to assist the patients to reliable resources of long-term support, including multidisciplinary team (MDT) approach.

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Title: Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey
Authors: Beverley Power
Soichi Shibuya
Brenda Lane
Simon Eaton
Paolo De Coppi
Publication date: 01-01-2020
Publisher: Springer Berlin Heidelberg
Keywords: Diaphragmatic Hernia
Diaphragmatic Hernia
ECMO
ECMO
Published in: Pediatric Surgery International / Issue 1/2020
Print ISSN: 0179-0358
Electronic ISSN: 1437-9813
DOI: https://doi.org/10.1007/s00383-019-04570-6

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey

Abstract

Background

Methods

Main results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Main results

Conclusions

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