title: Impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy.
abstract: The aim of this prospective cohort study was to evaluate the impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy (CP). Short-Form 36 version II was used to measure quality of life in carers of 57 Caucasian children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y 3mo) six and 12 months after insertion of a gastrostomy tube. Responses were calibrated against a normative dataset (Oxford Healthy Life Survey III). Six months after gastrostomy feeding was started, a substantial rise in mean domain scores for mental health, role limitations due to emotional problems, physical functioning, social functioning, and energy/vitality were observed. At 12 months after gastrostomy placement, carers reported significant improvements in social functioning, mental health, energy/vitality (mean increase >9.8 points;p<0.03), and in general health perception (mean increase 6.35 points;p=0.045) compared with results at baseline. Moreover, the values obtained for these domains at 12 months were not significantly different from the normal reference standard. Carers reported a significant reduction in feeding times, increased ease of drug administration, and reduced concern about their child's nutritional status. This study has demonstrated a significant, measurable improvement in the quality of life of carers after insertion of a gastrostomy feeding tube.
authors.affiliation: Department of Paediatrics, John Radcliffe Hospital, University of Oxford, Oxford OX3 9DU, UK. peter.sullivan@paediatrics.ox.ac.uk
authors.forename: Peter B
authors.initials: PB
authors.lastname: Sullivan
authors.forename: Edmund
authors.initials: E
authors.lastname: Juszczak
authors.forename: Allison M E
authors.initials: AM
authors.lastname: Bachlet
authors.forename: Adrian G
authors.initials: AG
authors.lastname: Thomas
authors.forename: Bridget
authors.initials: B
authors.lastname: Lambert
authors.forename: Angharad
authors.initials: A
authors.lastname: Vernon-Roberts
authors.forename: Hugh W
authors.initials: HW
authors.lastname: Grant
authors.forename: Muftah
authors.initials: M
authors.lastname: Eltumi
authors.forename: Nicola
authors.initials: N
authors.lastname: Alder
authors.forename: Crispin
authors.initials: C
authors.lastname: Jenkinson
mesh_terms: D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D017028:Caregivers / Q000523:psychology*; D002547:Cerebral Palsy / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D004185:Disability Evaluation; D019988:Children with Disabilities; D005260:Female; D005500:Follow-Up Studies; D005774:Gastrostomy / Q000379:methods*; D006304:Health Status; D006801:Humans; D007223:Infant; D008297:Male; D001523:Mental Disorders / Q000453:epidemiology / Q000523:psychology; D009752:Nutritional Status; D010288:Parenteral Nutrition / Q000523:psychology*; D010348:Patient Care Team; D011446:Prospective Studies; D011788:Quality of Life; D011795:Surveys and Questionnaires