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Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey
- Source :
- Pediatric Surgery International
- Publication Year :
- 2019
- Publisher :
- Springer Science and Business Media LLC, 2019.
-
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.
- Subjects :
- Counseling
Male
Parents
Quality of life
Pediatrics
medicine.medical_specialty
Parent support
Congenital diaphragmatic hernia
Disease
Computer-assisted web interviewing
Health Services Accessibility
GASTROESOPHAGEAL-REFLUX
MORBIDITY
Surveys and Questionnaires
Pediatric surgery
Health care
medicine
Humans
EPIDEMIOLOGY
Survivors
Multidisciplinary team approach
Growth Disorders
OUTCOMES
Science & Technology
Growth retardation
business.industry
Infant, Newborn
General Medicine
medicine.disease
Gastroesophageal reflux
Patient Satisfaction
Pediatrics, Perinatology and Child Health
Original Article
Female
Surgery
Deglutition Disorders
Hernias, Diaphragmatic, Congenital
FOLLOW-UP
business
Life Sciences & Biomedicine
Stress, Psychological
Subjects
Details
- ISSN :
- 14379813 and 01790358
- Volume :
- 36
- Database :
- OpenAIRE
- Journal :
- Pediatric Surgery International
- Accession number :
- edsair.doi.dedup.....a4770997db36f4b87bb41ddbbf4a4fe1