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Patient, parent and professional perception of the use of maintenance enteral nutrition in Paediatric Crohn's Disease
Author(s) -
Gavin J,
Marino L V,
Ashton J J,
Beattie R M
Publication year - 2018
Publication title -
acta paediatrica
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.772
H-Index - 115
eISSN - 1651-2227
pISSN - 0803-5253
DOI - 10.1111/apa.14571
Subject(s) - medicine , enteral administration , disease , parenteral nutrition , family medicine , pediatrics , crohn's disease , medical advice , intensive care medicine , nursing
Aim Maintenance enteral nutrition ( MEN ) is routinely used in Paediatric Crohn's Disease ( CD ) to prolong remission although there is limited evidence for efficacy and a lack of formal guidelines. This study surveyed patients’, parents’ and professional experience with MEN . Methods Two questionnaires were developed to survey the experience of MEN ; (i) Patients/Parents (children >10 years of age aimed to complete independently) and (ii) Dietitians. Questionnaires were sent to families prescribed MEN after exclusive enteral nutrition ( EEN ) between 2015‐17 (n = 77) and dietitians working in paediatric regional centres in UK (n = 23). Results Response rate to the questionnaires was 53% patients, 62% parents and 83% dietitians. Patients/parents reported medical/dietetic advice to be the primary factor affecting compliance, 30% patients reported side effects. Fifty‐six per cent of patients/58% parents stated a preference for dietary advice rather than MEN . Dietetic responses indicated 79% used MEN after EEN as standard procedure and 79% did not have exit criteria for MEN . Sixty‐eight per cent perceived the taste was the primary factor affecting patient compliance. Conclusion Patients’ perception of the usefulness of MEN differs to professionals. This study highlights the extensive practice of MEN after EEN in clinical remission, which may not be nutritionally indicated. Patient preference is for dietary advice rather than MEN .