Advertisement

Digestive Diseases and Sciences

, Volume 47, Issue 9, pp 1965–1968 | Cite as

Quality of Life Outcomes in Congenital Chronic Intestinal Pseudo-Obstruction

  • Lenore Schwankovsky
  • Hayat Mousa
  • Anita Rowhani
  • Carlo Di Lorenzo
  • Paul E. Hyman
Article

Abstract

The goal of this study was to assess the quality of life for children with chronic intestinal pseudoobstruction. We used a retrospective chart review to identify children with congenital chronic intestinal pseudoobstruction, then a structured telephone interview with parents that included the Child Health Questionnaire to gather information about the current status and quality of life for each patient and family. Children with chronic intestinal pseudo-obstruction had less freedom from pain, depression, and anxiety than healthy children or children with juvenile rheumatoid arthritis (P < 0.05 for all three parameters). Parents of children with chronic intestinal pseudo-obstruction had poorer emotional status than parents of healthy children or children with juvenile rheumatoid arthritis. The time required for parents to care for children with chronic intestinal pseudo-obstruction was greater than the time required to care for healthy children or children with juvenile rheumatoid arthritis (P < 0.01). In conclusion, the quality of life for children with chronic intestinal pseudo-obstruction lags behind that of healthy children and children with another chronic illness. Appropriate treatment of chronic pain may improve the quality of life for children with chronic intestinal pseudo-obstruction and their families. Moreover, attention to reducing each family's burden of time and emotional distress may help them cope better with their chronically ill child.

quality of life outcomes chronic intestinal pseudoobstruction 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

REFERENCES

  1. 1.
    Vargas JH, Sachs P, Ament, ME: Chronic intestinal pseudo-obstruction syndrome in pediatrics. J Pediatr Gastroenterol and Nutr 7:323–332, 1988Google Scholar
  2. 2.
    Hyman PE: Chronic intestinal pseudo-obstruction in childhood: progress in diagnosis and treatment. Scand J Gastroenterol 30Suppl 213:39–46, 1995Google Scholar
  3. 3.
    Spieth LE, Harris CV: Assessment of health-related quality of life in children and adolescents: an integrative review. J Pediatr Psychol 21(2):175–193, 1996Google Scholar
  4. 4.
    Osman L, Silverman M: Measuring quality of life for young children with asthma and their families. Eur Respir J 9(suppl 21):355s–341s, 1996Google Scholar
  5. 5.
    World Health Organization. Constitution of the World Health Organization. Annex I. In The First Ten Years of the World Health Organization. Geneva, World Health Organization, 1958Google Scholar
  6. 6.
    Mara, CA, Levine M, McKerrow R, Carleton BC: Overview of health-related quality-of-life measures for pediatric patients: Application in the assessment of pharmacotherapeutic and pharmacoeconomic outcomes. Pharmacotherapy 16(5):879–888, 1996Google Scholar
  7. 7.
    Pantell RH, Lewis CC: Measuring the impact of medical care on children. J Chron Dis 40:99S–108S, 1987Google Scholar
  8. 8.
    Hyman PE, Napolitano JA, Diego A, Patel S, Flores AF, Grill BB, Reddy SN, Garvey TQ, Tomomasa T: Antroduodenal manometry in the evaluation of chronic functional gastrointestinal symptoms. Pediatrics 86:39–44, 1990Google Scholar
  9. 9.
    Landgraf JM, Abetz L, Ware JE: The CHQ User's Manual, 1st ed. Boston, The Health Institute, New England Medical Center, 1996Google Scholar

Copyright information

© Plenum Publishing Corporation 2002

Authors and Affiliations

  • Lenore Schwankovsky
    • 1
  • Hayat Mousa
    • 1
  • Anita Rowhani
    • 2
  • Carlo Di Lorenzo
    • 3
  • Paul E. Hyman
    • 4
  1. 1.University of OhioColumbusUSA
  2. 2.University of CaliforniaIrvineUSA
  3. 3.Pittsburgh Children's HospitalPittsburghUSA
  4. 4.University of Kansas Medical CenterKansas CityUSA

Personalised recommendations