National Study on the Quality of Life of Patients With Anorectal Malformation

NCT ID: NCT02029248

Last Updated: 2017-07-19

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

762 participants

Study Classification

OBSERVATIONAL

Study Start Date

2012-04-30

Study Completion Date

2015-04-30

Brief Summary

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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.

Detailed Description

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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.

Conditions

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Anorectal Malformation

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Children 6-7

Patients who are between 6 and 7 years old

Quality of life questionnaire

Intervention Type OTHER

Children 8-11

Patients who are between 8 and 11 years old

Quality of life questionnaire

Intervention Type OTHER

Children 12-16

Patients who are between 12 and 16 years old

Quality of life questionnaire

Intervention Type OTHER

Patients 17-30

Patients who are between 17 and 30 years old

Quality of life questionnaire

Intervention Type OTHER

Interventions

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Quality of life questionnaire

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Patients who are between 6 and 30 years old
* Patients initially treated in a french pediatric surgery service for anorectal malformation

Exclusion Criteria

* Patients lost from sight or dead
* Patients with concomitant malformations that can modify sphincter functions besides anorectal malformation (spina bifida, )
* Patients whose brain functions do not allow to reply to a questionnaire (mental retardation)
Minimum Eligible Age

6 Years

Maximum Eligible Age

30 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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MAREP ( Center For Rare Diseases Center Ano-Rectal And Pelvic Abnormalities)

OTHER

Sponsor Role collaborator

Nantes University Hospital

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Guillaume Podevin, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

CHU d'Angers (France)

Locations

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CHU Amiens

Amiens, , France

Site Status

CHU Angers

Angers, , France

Site Status

CHU Besançon

Besançon, , France

Site Status

CHU Bordeaux

Bordeaux, , France

Site Status

CHU Brest

Brest, , France

Site Status

Hospices Civils de Lyon

Bron, , France

Site Status

CHU Caen

Caen, , France

Site Status

CHU Clermont-Ferrand

Clermont-Ferrand, , France

Site Status

Hôpitaux Civils de Colmar

Colmar, , France

Site Status

CHU Dijon

Dijon, , France

Site Status

CHU Fort-de-France

Fort-de-France (Martinique), , France

Site Status

CHU Grenoble

Grenoble, , France

Site Status

AP-HP Hôpital Bicêtre

Le Kremlin-Bicêtre, , France

Site Status

CH Le Mans

Le Mans, , France

Site Status

CHRU Lille

Lille, , France

Site Status

CHU Limoges

Limoges, , France

Site Status

AP-HM La Timone

Marseille, , France

Site Status

AP-HM Hôpital Nord

Marseille, , France

Site Status

CHU Montpellier

Montpellier, , France

Site Status

CHU de Nantes

Nantes, , France

Site Status

CHU Nice

Nice, , France

Site Status

CHR Orléans

Orléans, , France

Site Status

AP-HP Hôpital Trousseau

Paris, , France

Site Status

AP-HP Hôpital Necker

Paris, , France

Site Status

AP-HP Hôpital Robert Debré

Paris, , France

Site Status

CHU Pointe-à-Pitre

Pointe-à-Pitre (Guadeloupe), , France

Site Status

CHU Poitiers

Poitiers, , France

Site Status

CHU Reims

Reims, , France

Site Status

CHU Rennes

Rennes, , France

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CHU Rouen

Rouen, , France

Site Status

CHR La Réunion

Saint Denis (La Réunion), , France

Site Status

CH Saint Brieuc

Saint-Brieuc, , France

Site Status

CHU Saint Etienne

Saint-Etienne, , France

Site Status

CHRU Strasbourg

Strasbourg, , France

Site Status

CHU Toulouse

Toulouse, , France

Site Status

CHRU Tours

Tours, , France

Site Status

CHU Nancy

Vandœuvre-lès-Nancy, , France

Site Status

Countries

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France

References

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Clermidi P, Podevin G, Cretolle C, Sarnacki S, Hardouin JB. The challenge of measuring quality of life in children with Hirschsprung's disease or anorectal malformation. J Pediatr Surg. 2013 Oct;48(10):2118-27. doi: 10.1016/j.jpedsurg.2013.03.071.

Reference Type BACKGROUND
PMID: 24094967 (View on PubMed)

Mantoo S, Meurette G, Wyart V, Hardouin J, Cretolle C, Capito C, Sarnacki S, Podevin G, Lehur PA. The impact of anorectal malformations on anorectal function and social integration in adulthood: report from a national database. Colorectal Dis. 2013 Jun;15(6):e330-5. doi: 10.1111/codi.12186.

Reference Type BACKGROUND
PMID: 23464709 (View on PubMed)

Podevin G, Petit T, Mure PY, Gelas T, Demarche M, Allal H, Becmeur F, Varlet F, Philippe P, Weil D, Heloury Y. Minimally invasive surgery for anorectal malformation in boys: a multicenter study. J Laparoendosc Adv Surg Tech A. 2009 Apr;19 Suppl 1:S233-5. doi: 10.1089/lap.2008.0137.supp.

Reference Type BACKGROUND
PMID: 18973467 (View on PubMed)

Fleury J, Picherot G, Cretolle C, Podevin G, David A, Caillon J, Roze JC, Gras-le Guen C. Currarino syndrome as an etiology of a neonatal Escherichia coli meningitis. J Perinatol. 2007 Sep;27(9):589-91. doi: 10.1038/sj.jp.7211783.

Reference Type BACKGROUND
PMID: 17724455 (View on PubMed)

Other Identifiers

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BRD/10/06-R

Identifier Type: -

Identifier Source: org_study_id

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