Dokument: Anorectal malformation and Hirschsprung’s Disease: comparison of long-term outcome in patients with and without temporary ostomy regarding continence and quality of life

Titel:

Anorectal malformation and Hirschsprung’s Disease: comparison of long-term outcome in patients with and without temporary ostomy regarding continence and quality of life

Weiterer Titel:

Anorektale Malformation und Hirschsprung'sche Krankheit: Vergleich der Langzeitergebnisse bei Patienten mit Operation ohne Stoma vs. Patienten mit vorübergehender Stomaversorgung in Bezug auf Kontinenz und Lebensqualität

URL für Lesezeichen:

https://docserv.uni-duesseldorf.de/servlets/DocumentServlet?id=65795

URN (NBN):

urn:nbn:de:hbz:061-20240610-081607-1

Kollektion:

Dissertationen

Sprache:

Englisch

Dokumententyp:

Wissenschaftliche Abschlussarbeiten » Dissertation

Medientyp:

Text

Autor:

Langenstück, Nora [Autor]

Dateien:

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Dateien vom 10.06.2024 / geändert 10.06.2024

Beitragende:

Univ.-Prof.Dr.med. Wolfram T. Knoefel [Gutachter]
Prof. Dr. med. Stephan vom Dahl [Gutachter]

Stichwörter:

Hirschsprung'sche Erkrankung, Morbus Hirschsprung, Anorektale Malformationen, anorektale Fehlbildungen, Analatresie, Langzeitergebnisse, Stoma, Lebensqualität, Kontinenz, Vergleich, Kinder

Dokumententyp (erweitert):

Dissertation

Dewey Dezimal-Klassifikation:

600 Technik, Medizin, angewandte Wissenschaften » 610 Medizin und Gesundheit

Beschreibungen:

Zusammenfassung (Deutsch)
Weltweit werden Patienten mit anorektalen Malformationen (ARM) und Hirschsprung’ scher Erkrankung (HD) nicht nach einer einheitlichen Leitlinie behandelt. Abhängig von multiplen Faktoren werden die Patienten zumeist mit einer einzeitigen Reparaturoperation oder aber mit einem temporären Stoma und einer zweizeitigen Korrekturoperation versorgt. Bisherige Forschungsergebnisse zu Langzeitergebnissen sind uneinheitlich, jedoch mehren sich in der Literatur die Hinweise auf eine Überlegenheit der Primärkorrektur.
Das Ziel dieser Studie war es, die Langzeitergebnisse für Funktionalität und Lebensqualität von Patienten nach Primärkorrektur und mehrzeitiger Operation zu vergleichen. Diese ist die erste Studie mit diesem speziellen Fokus.
Zu diesem Zweck wurden alle Akten von Patienten ausgewertet, die zwischen 2002 und 2017 wegen ARM oder HD an einem der zwei Studienkrankenhäuser operiert wurden und Daten zum perioperativen Verlauf gesammelt. Anschließend führten wir Telefoninterviews mit allen Patienten durch, die einer Teilnahme an der Studie zugestimmt hatten. Der hierfür genutzte Fragebogen basiert auf den funktionellen Scores von Wildhaber und Krickenbeck, der Abschnitt zur Lebensqualität auf den Scores von Bai et. al. und Barrena et. al. Die erhobenen Daten wurden mit statistischen Standardmethoden analysiert.
Unsere Daten zeigen eine Tendenz zu besseren funktionellen Ergebnissen in der Gruppe der Patienten nach Primärkorrektur in beinahe allen Subkategorien. Die Ergebnisse bezüglich der Lebensqualität zeigten keinen relevanten Unterschied zwischen den beiden Gruppen. Aufgrund der kleinen Zahl kompletter Datensätze konnten wir keine statistische Signifikanz der gezeigten Unterschiede belegen. Dennoch halten wir unsere Ergebnisse für klinisch relevant. Da unsere Studie die erste ihrer Art ist, ist die direkte Vergleichbarkeit zwar eingeschränkt, bisherige Studien mit Fokus auf Unterkategorien unserer Forschung kommen jedoch zu vergleichbaren Ergebnissen und sprechen sich teils sehr deutlich für den bevorzugten Einsatz der Primärkorrektur wo immer möglich aus.
In Zukunft werden größere Studien notwendig sein, um statistisch belastbare Daten in diesem komplexen Feld zu generieren und die bestmögliche Versorgung von Patienten mir ARM und HD zu gewährleisten.

Abstract (English)
Worldwide patients born with anorectal malformations (ARM) or Hirschsprung’s Disease (HD) are not being treated according to standardized guidelines. Depending multiple factors, they usually either receive a primary repair or a primary ostomy with a secondary repair surgery. Research on the topic is inconsistent so far but evidence proofing superiority of primary repair is growing. Tools such as scores and standardized questionnaires have been developed to objectify functional outcome as well as the patients’ quality of life, however, there has yet to be reached consensus on which scores to use to facilitate international comparability.
The aim of this study was to compare patients’ long-term outcome after primary and multiple-staged repair regarding bowel function and quality of life. This is the first study with this specific focus.
For this purpose, we evaluated patient charts from two clinics in Germany of all patients who underwent surgery for ARM or HD between the years of 2002 and 2017 and collected data concerning perioperative circumstances. Subsequently we conducted a phone interview with all patients who had consented to participate in our study. The questionnaire used for the interview was based on Wildhaber Score and Krickenbeck Criteria evaluating functional outcome and on Scores by Bai et.al. and Barrena et. al. analyzing quality of life indicators. The collected data was evaluated using statistical standard tests.
Our results showed a tendency towards better outcome regarding bowel function in the primary repair group in almost all subcategories. Outcomes for quality of life were almost entirely balanced between the primary and the multiple-stage repair. Due to the small number of complete data sets we could not proof statistical significance of the difference shown. However, we believe the difference to be clinically relevant. As our study is the first of its kind, direct comparison with earlier findings is lacking and must rely on indirect comparison with findings focusing on subtopics of our research. Our findings match several recent studies of the field that strongly advocate to prefer the primary repair whenever clinically possible.
Further larger studies will be needed in the future to create the statistical power to find solid data in the complex field to ensure the best care possible to ARM and HD patients.

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Heinrich-Heine-Universität Düsseldorf

Dokument: Anorectal malformation and Hirschsprung’s Disease: comparison of long-term outcome in patients with and without temporary ostomy regarding continence and quality of life