Anorectal Malformation Clinical Trial
Official title:
National Study on the Quality of Life of Patients With Anorectal Malformation (MARQOL)
Anorectal malformations, occurring approximately 1 in 5000 live births, mainly involve the
distal anus and rectum, but also sometimes the urinary and genital tracts. Defects range from
the minor and easily treated with an excellent functional prognosis, to those that are
complex and often associated with a poor functional prognosis.
Despite the better knowledge of the anatomy and physiology and the improvement of surgical
management after birth, fecal and urinary incontinence can occur, due mainly to deficient
nerve supply.
The quality of life of such patients is largely unknown in this country. The aim of the
investigators study is to propose specific and generic questionnaires to the patients
registered in the national database, correlated to their anatomical and functional status. A
better understanding of such correlations should allow improvements in their medical and
social management.
Anorectal malformations (ARM), occurring approximately 1 in 5000 live births, mainly involve
the distal anus and rectum, but also sometimes the urinary and genital tracts. Defects range
from the minor and easily treated with an excellent functional prognosis, to those that are
complex and often associated with a poor functional prognosis. Despite the better knowledge
of the anatomy and physiology and the improvement of surgical management after birth, fecal
and urinary incontinence can occur, due mainly to deficient nerve supply. A few studies and
clinical practice have shown that disease-specific problems of ARM have an effect on somatic
function, mental health and psychosocial functioning.
The assessment of quality of life requires a self-report questionnaire composed of items
related to physical, emotional and social functioning, and disease-related symptoms. A
specific ARM questionnaire, the HAQL, was developed by a Dutch team and published in 2001.
Associated with generic questionnaire, it allowed quality of life assessment in Dutch
population.
The quality of life of such patients is largely unknown in this larger country. The aim of
the investigators study is to propose specific (HAQL translated from Dutch to French) and
generic questionnaires to the patients registered in the national database, correlated to
their anatomical and functional status.
A better understanding of such correlations should allow improvements in their medical and
social management.
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