TY - JOUR
T1 - Explaining change over time in quality of life of adult patients with anorectal malformations or Hirschsprung's disease.
AU - Hartman, E.E.
AU - Oort, F.J.
AU - Visser, M.R.
AU - Sprangers, M.A.
AU - de Langen, Z.J.
AU - Hanneman, M.J.G.
AU - van Heurn, L.W.E.
AU - Rieu, P.N.M.A.
AU - Madern, G.C.
AU - van der Zee, D.C.
AU - Looyaard, N.
AU - van Silfhout-Bezemer, M.
AU - Aronson, D.C.
AU - Looyard, Nic
PY - 2006
Y1 - 2006
N2 - PURPOSE: The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care. METHODS: Questionnaires were administered to 261 patients ( 77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice. RESULTS: On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable "disease cognition'' most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease. CONCLUSIONS: Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients
AB - PURPOSE: The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care. METHODS: Questionnaires were administered to 261 patients ( 77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice. RESULTS: On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable "disease cognition'' most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease. CONCLUSIONS: Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients
KW - international
U2 - https://doi.org/10.1007/s10350-005-0216-4
DO - https://doi.org/10.1007/s10350-005-0216-4
M3 - Article
C2 - 16328611
SN - 0012-3706
VL - 49
SP - 96
EP - 103
JO - Diseases of the colon and rectum
JF - Diseases of the colon and rectum
IS - 1
ER -