Pediatr Surg Int. 2019 Nov 6. doi: 10.1007/s00383-019-04570-6. [Epub ahead of print]
https://www.ncbi.nlm.nih.gov/pubmed/31696254
Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey.
Power B1, Shibuya S2, Lane B1, Eaton S2, De Coppi P3,4.
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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.
KEYWORDS:
Congenital diaphragmatic hernia; Gastroesophageal reflux; Growth retardation; Multidisciplinary team approach; Quality of lifePMID: 31696254 DOI: 10.1007/s00383-019-04570-6
