| Title |
Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia |
| Published in |
Archives of disease in childhood. ISSN 1468-2044. |
| Author |
Poley, M.J. (Marten); Stolk, E.A. (Elly); Tibboel, D. (Dick); Molenaar, J.C.; Busschbach, van J.J. (Jan) |
| Date |
2004-01-01 |
| Language |
English |
| Type |
article |
| Abstract |
AIMS: To examine short term and long term health related quality of life
(HRQoL) of survivors of congenital anorectal malformations (ARM) and
congenital diaphragmatic hernia (CDH), and to compare these patients'
HRQoL with that of the general population. METHODS: HRQoL was measured in
286 ARM patients and 111 CDH patients. All patients were administered a
symptom checklist and a generic HRQoL measure. For the youngest children
(aged 1-4) the TAIQOL (a preliminary version of the TAPQOL) was used, for
the other children (aged 5-15) the TACQOL questionnaire, and for adults
(aged >16) the SF-36. RESULTS: As appeared from the symptom checklists,
many patients remained symptomatic into adulthood. In the youngest ARM
patients (aged 1-4 years), generic HRQoL was severely affected, but the
older ARM patients showed better HRQoL. In the CDH patients, the influence
of symptoms on HRQoL seemed less profound. The instruments we used
revealed little difference between adults treated for ARM or CDH and the
general population. CONCLUSIONS: These results show that for two neonatal
surgical procedures, improved survival does not come at the expense of
poor HRQoL in adults. Even though there is considerable suffering in terms
of both morbidity and mortality in the youngest group, the ultimate
prognosis of survivors of the two studied congenital malformations is
favourable. This finding can be used to reassure parents of patients in
need of neonatal surgery for one of these conditions about the prospects
for their child. |
| Publication |
http://hdl.handle.net/1765/8520 |
| Persistent Identifier |
urn:NBN:nl:ui:15-1765/8520 |
| Metadata |
XML |
| Repository |
Erasmus University Rotterdam |