title: Long-term health-related quality of life of patients with pediatric onset intestinal failure.
abstract: BACKGROUND
  Despite improved survival rates of patients with pediatric intestinal failure (IF), data on health-related quality of life (HRQoL) of IF patients are still scarce. We hypothesized that I) continued parenteral nutrition, underlying intestinal motility disorder, abdominal pain and problematic bowel function would be associated with poorer HRQoL and higher parental stress levels, and II) the time intervals since the latest bowel operation, the latest episode of sepsis, and the latest inpatient care episode would be associated with better HRQoL and lower parental stress.
  
  
  METHODS
  Patients with pediatric onset IF and their parents answered questionnaires on HRQoL, parental stress, and bowel-related symptoms. Clinical data were gathered by chart review. Controls matched for age and sex were randomly chosen by the Population Register Centre of Finland.
  
  
  RESULTS
  Thirty-six (73%) IF patients participated at a median age of 9years. Overall HRQoL was similar to healthy peers, and frequent abdominal pain was the only factor associated with poorer HRQoL. Abdominal pain and stool frequency >3 times per day were associated with higher levels of parental stress, whereas longer time intervals since the latest bowel operation or hospitalization were associated with lower parental stress levels.
  
  
  CONCLUSIONS
  Long-term HRQoL of pediatric IF patients is comparable to that of healthy peers. Time often eases parental stress, but frequent abdominal pain presents a challenge to the well-being of some patients and requires medical attention.
authors.affiliation: Pediatric Surgery, Pediatric Liver and Gut Research Group, Helsinki University Central Hospital and University of Helsinki. Electronic address: annika.mutanen@helsinki.fi.
authors.forename: Annika
authors.initials: A
authors.lastname: Mutanen
authors.affiliation: Pediatric Surgery, Pediatric Liver and Gut Research Group, Helsinki University Central Hospital and University of Helsinki.
authors.forename: Silja
authors.initials: S
authors.lastname: Kosola
authors.affiliation: Division of Pediatric Gastroenterology, Children's Hospital, Helsinki University Central Hospital and University of Helsinki.
authors.forename: Laura
authors.initials: L
authors.lastname: Merras-Salmio
authors.affiliation: Division of Pediatric Gastroenterology, Children's Hospital, Helsinki University Central Hospital and University of Helsinki.
authors.forename: Kaija-Leena
authors.initials: KL
authors.lastname: Kolho
authors.affiliation: Pediatric Surgery, Pediatric Liver and Gut Research Group, Helsinki University Central Hospital and University of Helsinki.
authors.forename: Mikko P
authors.initials: MP
authors.lastname: Pakarinen
mesh_terms: D015746:Abdominal Pain / Q000150:complications*; D000293:Adolescent; D016022:Case-Control Studies; D002648:Child; D003672:Defecation; D005260:Female; D005387:Finland; D006304:Health Status; D006760:Hospitalization; D006801:Humans; D007408:Intestinal Absorption; D007410:Intestinal Diseases / Q000150:complications* / Q000503:physiopathology; D008297:Male; D010290:Parents; D011788:Quality of Life; D011795:Surveys and Questionnaires; D015996:Survival Rate
keywords: Children; Intestinal failure; Parental stress; Parenteral nutrition; Quality of life; Short bowel syndrome