Defining outcomes following congenital diaphragmatic hernia using standardised clinical assessment and management plan (SCAMP) methodology within the CDH EURO consortium

Abstract

Treatment modalities for neonates born with congenital diaphragmatic hernia (CDH) have greatly improved in recent times with a concomitant increase in survival. In 2008, CDH EURO consortium, a collaboration of a large volume of CDH centers in Western Europe, was established with a goal to standardize management and facilitate multicenter research. However, limited knowledge on long-term outcomes restricts the identification of optimal care pathways for CDH survivors in adolescence and adulthood. This review aimed to evaluate the current practice of long-term follow-up within the CDH EURO consortium centers, and to review the literature on long-term outcomes published from 2000 onward. Apart from having disease-specific morbidities, children with CDH are at risk for impaired neurodevelopmental problems and failure of educational attainments which may affect participation in society and the quality of life in later years. Thus, there is every reason to offer them long-term multidisciplinary follow-up programs. We discuss a proposed collaborative project using standardized clinical assessment and management plan (SCAMP) methodology to obtain uniform and standardized follow-up of CDH patients at an international level.

Quality of life was similar in children with congenital diaphragmatic hernia and oesophageal atresia and related to respiratory morbidity

“…The cardiopulmonary incremental exercise test appears as an efficient tool to assess respiratory morbidity associated with QOL impairment. Finally, the development of disease‐specific QoL questionnaires could improve the assessment of QOL in children with CDH repair 29 …”

“…Finally, the development of disease-specific QoL questionnaires could improve the assessment of QOL in children with CDH repair . 29…”

A systematic review and meta-analysis of surgical morbidity of primary versus patch repaired congenital diaphragmatic hernia patients

“…This is why a close long-term follow-up in a multidisciplinary clinic is required, though sufficient data on the ideal length and frequency of visits of follow-up has not been found yet. This is due to the fact that most studies are single center studies and include small numbers of patients 56 . In this review the focus was mainly on short term complications in these patients.…”

Congenital Diaphragmatic Hernia: A Major Challenge for Neonatologists

“…Rameshwar Prasad Department of Neonatology, Rajendra Institute of Medical Sciences, Ranchi, Jharkhand, India *Address all correspondence to: drrameshwarprasad@hotmail.com hypertension, obstructive pulmonary disease, reduced exercise capacity, recurrent pulmonary infection), gastroesophageal reflux, nutritional derangements, neurodevelopmental delays, hernia recurrence, hearing deficits and orthopedic deformities [179,180]. The Health-related Quality of Life (HRQoL) has been reported to improve as the survivors grow older, while it may be variably compromised during the childhood [181][182][183][184].…”

“…The guidelines for the follow-up of CDH survivors have been outlined by the American Academy of Pediatrics and are available [179]. A review of current follow up practices in CDH EURO consortium centers revealed that even though 15 out of 19 centers had structured and standardized follow up program for the CDH patients, the annual follow up until 16 years of age was not done in any of the participating centers [180]. The study group proposed the implementation of standardized follow-up of CDH patients for extended evaluation of the survivors for their long term outcomes [180].…”