Assessment of disease-specific knowledge in Australian children with inflammatory bowel disease and their parents.

AIMS: Disease-specific knowledge may influence disease outcome and quality of life in children with inflammatory bowel disease (IBD). This prospective study aimed to define IBD-related knowledge in a group of Australian children with IBD and their parents using a validated measure of disease-specific knowledge, the Inflammatory Bowel Disease Knowledge Inventory Device (IBD-KID). METHODS: Children (less than 18 years) diagnosed with IBD who were members of the Australian patient support organisation were identified. Each family was sent copies of the IBD-KID. Children aged 10-18 years and all parents were asked to complete the IBD-KID and to also provide demographic details and disease characteristics. RESULTS: Replies were received from 196 families: 262 parents and 128 children completed questionnaires. Most children had a diagnosis of Crohn disease (65%) and 51% were male. Children diagnosed in the preceding 6 years scored higher than those with longer time since diagnosis. Parents had better scores in the IBD-KID than the children (P < 0.0001). Overall, parents and children had poor understanding of key management issues for IBD (such as side effects of steroids), important outcomes (e.g. growth) and the use of complementary therapies. CONCLUSIONS: Consistent patterns of IBD-related knowledge were noted in this large group of Australian children with IBD and their parents. Measurement of disease-related knowledge with the IBD-KID can identify gaps in understanding, thereby permitting focused educational activities. Although these knowledge gaps may impact upon outcomes, further prospective studies are now required to elucidate the relationships between enhanced knowledge and specific outcomes.

Generalisability of the inflammatory bowel disease knowledge inventory device to assess disease-related knowledge in Australian children.

AIM: Disease knowledge may affect disease outcome, adherence to therapy and quality of life in inflammatory bowel disease (IBD). The IBD knowledge inventory device (IBD-KID) was specifically developed and validated for children to measure disease-specific knowledge. The relevance of the IBD-KID was now determined in an Australian population of children with IBD. METHODS: Twenty children with an established diagnosis of IBD for 2 years or greater, and their parents, were asked to complete the IBD-KID and the Crohn's and Colitis Knowledge Score (CCKNOW). Twenty children recently diagnosed with IBD completed the IBD-KID alone, as did three populations of health workers within a paediatric hospital. RESULTS: Children with longstanding disease scored 12.1 ± 4.6 (from 23 questions) in the IBD-KID and 13.2 ± 5 (from 30 questions) in the CCKNOW device (P < 0.05). Children had fewer 'don't know' answers with the IBD-KID. Areas of poor knowledge included aspects of IBD therapies and IBD outcome. Recently diagnosed children performed less well than those with longer period of illness (P = 0.03). Parents scored more highly in both scores than their children (16.8 ± 2.7 and 18.1 ± 4.2: P = 0.008). Medical staff had higher scores in the IBD-KID (19.5 ± 2.1) than did nursing (13.2 ± 2.7) or clerical (7.3 ± 4.1) staff (P < 0.005). CONCLUSIONS: The IBD-KID provides a reliable and appropriate assessment of disease knowledge in Australian children with IBD and can now be used in activities targeting disease-related education and as a tool to ascertain where knowledge can be improved in children with IBD.

Exclusive enteral feeding as primary therapy for Crohn's disease in Australian children and adolescents: a feasible and effective approach.

BACKGROUND: Exclusive enteral feeding has been shown to be as efficacious as corticosteroids in inducing remission in children with Crohn's disease (CD), with additional nutritional benefits. The use of polymeric formulae provides superior palatability and acceptance over elemental feeds, but polymeric formulae have not been universally adopted. The present retrospective analysis of enteral feeding in children with Crohn's disease aims to demonstrate the short-term benefits of enteral feeding in children upon disease activity and nutrition parameters. METHODS: The case records of children with CD managed with exclusive enteral nutrition (EEN) by a multidisciplinary team over a 2-year period were reviewed. Data relating to therapy, background disease details, and outcome were collated. Primary outcome measures established were weight change and disease activity (Pediatric Crohn's Disease Activity Index: PCDAI). RESULTS: Twenty-seven children received EEN with polymeric formulae. Fifteen children had newly diagnosed CD and 12 had known long-standing CD. Twenty-four children completed the prescribed period of EEN. Twelve of 15 (80%) newly diagnosed CD and seven of 12 (58%) with long-standing disease entered remission. Children with newly diagnosed CD responding to EEN took all feeds orally and gained an average of 4.7+/-3.5 kg with mean PCDAI decreasing from 37.1+/-10.8 to 6.7+/-5.1 after 8 weeks. In addition, four children continued supplementary polymeric formula (without other medical therapies) and all have maintained remission during an average follow-up period of 15.2 months. CONCLUSION: Exclusive enteral feeds induced remission in 80% of children with newly diagnosed CD (on intention-to-treat basis) when used as sole initial therapy while also improving nutritional status. All newly diagnosed children treated with EEN, who were able to establish feeds, achieved remission. In addition, remission may be prolonged with oral supplementary formula as sole ongoing treatment. Further study of the role(s) of enteral feeds and of longer-term benefits of enteral feeding in children with CD is now required.

Role of esophagogastroduodenoscopy in the initial assessment of children with inflammatory bowel disease.

INTRODUCTION: Diagnosis of inflammatory bowel disease (IBD) and differentiation between Crohn's disease (CD) and ulcerative colitis (UC) can be difficult in children. Several previous studies suggest that esophagogastroduodenoscopy (EGD) and biopsies are important in the initial investigation of children with suspected IBD. The aim of the present paper was to assess the importance of EGD in the initial diagnostic appraisal of children with suspected IBD. METHODS: Children diagnosed with IBD over a 4-year period were identified from a dedicated IBD database. Retrospective chart review documented presenting signs and symptoms, endoscopic features in the upper and lower gastrointestinal tract and histological findings on mucosal biopsies. RESULTS: Eighty-six children were diagnosed with IBD of whom 61 (70.9%) had CD, 13 (21.3%) UC, and the remainder, indeterminate colitis. Esophagogastroduodenoscopy was performed in 76 (88.4%). Nine children were diagnosed with IBD solely on the basis of information obtained following EGD. None of these children had colitis and all had abnormal histological findings on review of mucosal biopsies from the upper gastrointestinal tract. Thirteen (23.6%) of 55 children with CD had granulomas noted within biopsies obtained during EGD and another 20 had significant inflammatory changes on histological examination of upper gastrointestinal tract biopsies. Crohn's disease was diagnosed in 25 of 38 children with pan-colitis. Thirteen children were correctly classified as having CD only following assessment of their upper gastrointestinal tract. This included the presence of upper gut granulomata in eight children. CONCLUSION: The performance of EGD in these children with IBD provided additional diagnostic yield and guided the differentiation of disease type in many patients. Esophagogastroduodenoscopy is an essential component in the initial diagnostic assessment of children with possible CD or UC.