PICASsO study (version 2)
Research type
Research Study
Full title
PICASsO-study Paediatric Intestinal failure: Cognitive And Social-emotional Outcomes Parent-child relationship, cognitive development and social-emotional functioning in children with intestinal failure
IRAS ID
276800
Contact name
Theodoric Wong
Contact email
Sponsor organisation
Erasmus University Medical Center - Sophia Children's Hospital
Duration of Study in the UK
0 years, 6 months, 1 days
Research summary
PARENT-CHILD RELATIONSHIP, COGNITIVE DEVELOPMENT AND SOCIAL-EMOTIONAL FUNCTIONING IN CHILDREN WITH INTESTINAL FAILURE
Why? The last decades, parenteral nutrition (PN) treatment in multidisciplinary teams has tremendously improved pediatric intestinal failure (IF) survival rates and decreased complications. Therefore, new challenges become apparent, concerning cognitive development, social-emotional aspects and parent-child relationship. Because of long hospitalization periods, diminished feeding opportunities, multiple line infections (affecting the brain) and limited freedom of movement due to the PN administration (impeding exploratory play), we expect to find disturbed parent-child attachment, impaired cognitive development and psychosocial problems. In the future, we want to take early necessary measures and offer guidance to parents and children with IF to prevent cognitive and psychosocial problems later in life.
What? In this multicenter, cross-sectional observational cohort study, we will assess (1) parent-child attachment and interaction in a cohort of children known with IF and (a history of) home PN dependence, and (2) cognitive development and social-emotional functioning in these children. Age-specific psychological questionnaires will be completed and a developmental assessment will be done.
Who, where and how? Children known with IF, (previously) dependent on home PN, and their parents, will be asked to participate in the study. These are children and parents known at the multidisciplinary paediatric IF team of the Birmingham Women's and Children's Hospital (and also of the IF team of the Erasmus MC-Sophia Children’s Hospital in Rotterdam, The Netherlands). They will be asked to fill out up to five questionnaires (depending on age) at home, taking one and a half hour in total to complete. A cognitive test will be done, taking one and a half hour. The total duration of participating in the study is approximately two weeks. If necessary, appropriate psychological guidance will be offered.REC name
East Midlands - Nottingham 2 Research Ethics Committee
REC reference
22/EM/0043
Date of REC Opinion
8 Apr 2022
REC opinion
Further Information Favourable Opinion