Psychosoziale Unterstützung von Menschen mit Colitis ulcerosa und Reizdarmsyndrom: eine Machbarkeitsstudie zu Bedarf, Fokus und Durchführbarkeit

Zusammenfassung

Ziel der Studie Colitis ulcerosa (CU) und Reizdarmsyndrom (RDS) gehen mit hoher somatischer Symptombelastung, reduzierter Lebensqualität und psychischen Beschwerden einher. Die subjektive Belastung, der Wunsch vieler Betroffener und die Beteiligung psychischer Prozesse an der Wahrnehmung der Symptomatik begründen die Entwicklung psychosozialer Unterstützungsangebote. Ziel dieser Machbarkeitsstudie war es, Bedarf, inhaltlichen Fokus und Machbarkeit eines solchen Angebots zu evaluieren. Betroffene mit CU und RDS wurden parallel eingeschlossen, um krankheitsspezifische und krankheitsübergreifende Aspekte für psychosoziale Interventionen zu identifizieren.

Methodik Erwachsene Menschen mit CU oder RDS wurden telefonisch mithilfe eines standardisierten Interviewleitfadens befragt. Mittels numerischer Analogskalen sowie offener Fragen wurden Belastungen durch und Umgang mit der Erkrankung, krankheitsbezogene Erwartungen und Krankheitsangst, Zufriedenheit mit der Versorgung, Unterstützungs- und Informationsbedarf sowie Präferenzen hinsichtlich eines Unterstützungsprogramms erfragt. Deskriptive Kennzahlen zu quantitativen Variablen und diagnosespezifische Gruppenvergleiche wurden berechnet. Die Antworten zu den offenen Fragen wurden nah an den Aussagen der Teilnehmenden zusammengefasst und ausgezählt.

Ergebnisse n=35 Personen (CU: n=15; RDS: n=20) nahmen teil (Alter: m=40,8, SD=14,6; 71% weibl.). Betroffene beider Erkrankungen zeigten ein mittleres Belastungsniveau, wobei jenes von Personen mit RDS signifikant höher war. Beide Gruppen berichteten über relevante krankheitsbezogene Ängste, wobei die Einschränkung durch diese bei RDS-Betroffenen höher war. Krankheitsbezogene Erwartungen unterschieden sich nicht zwischen den Gruppen. Patient:innen mit RDS zeigten eine geringe Zufriedenheit mit der Versorgung und fühlten sich schlechter über ihre Erkrankung informiert als Betroffene von CU. Beide Gruppen gaben eine hohe Wahrscheinlichkeit an, an einem psychologischen Unterstützungsprogramm teilzunehmen und benannten krankheitsbezogene Erwartungen und Krankheitsangst als wichtige Bestandteile eines solchen.

Diskussion Die Ergebnisse bestätigen den erhöhten Bedarf und das Interesse an psychosozialer Unterstützung sowie die Relevanz krankheitsbezogener Erwartungen und Krankheitsangst bei beiden Erkrankungen. Unterschiede in Symptomwahrnehmung und Bewertung der Versorgung weisen auf die Notwendigkeit krankheitsspezifischer Elemente in psychosozialen Unterstützungsangeboten hin.

Schlussfolgerung Die Ergebnisse zeigen den hohen Bedarf an psychosozialer Unterstützung von Menschen mit CU und RDS und liefern Hinweise auf die Machbarkeit eines psychosozialen Therapieprogramms.

Abstract

Objectives Ulcerative colitis (UC) and irritable bowel syndrome (IBS) are associated with high somatic symptom burden, reduced quality of life, and increased psychological distress. The subjective burden, the wish of many patients, and the involvement of psychological processes in symptom perception justify the development of psychosocial support services. We aimed to evaluate need, content and feasibility of such an offer. We included patients with both UC and RDS in order to identify disease-specific and trans-diagnostic aspects for psychosocial interventions.

Methods We conducted telephone interviews with adult patients with UC or IBS using a standardized interview guide. We used numerical rating scales and open-ended questions to assess burden of and coping with the disease, disease-related expectations and anxiety, satisfaction with care, support and information needs, and preferences regarding support programs. We calculated descriptive metrics for quantitative variables as well as diagnosis-specific group comparisons. The answers to the open questions were summarised and counted in close accordance with the participants’ statements.

Results N=35 patients (UC: n = 15; IBS: n=20) participated (age: M=40.80, SD=14.56; 71% female). In both groups, patients showed a medium level of disease burden, with higher rates for IBS. Both groups reported disease-related anxiety, with higher levels in patients with IBS. Disease-related expectations did not differ between groups. Patients with IBS showed low satisfaction with care and felt less informed about their disease than patients with UC. Both groups indicated a high motivation of participating in a psychological support program and named illness-related expectations and illness anxiety as important components of such.

Discussion The results confirm an increased need for psychosocial support and the relevance of disease-related expectations and anxiety for both diseases. Differences in symptom perception and care satisfaction indicate the importance of disease-specific elements in psychosocial therapy programs.

Conclusion The results demonstrate the high need for psychosocial support of patients with UC and IBS and indicate the feasibility of a psychosocial therapy program.

Schlüsselwörter

Reizdarmsyndrom - Colitis ulcerosa - Psychosoziale Interventionen - Gesundheitsversorgung - Machbarkeitsstudien

Key words

Irritable bowel syndrome - Ulcerative colitis - Psychosocial interventions - Delivery of health care - Feasibility studies

Publikationsverlauf

Eingereicht: 28. April 2021

Angenommen nach Revision: 28. Februar 2022

Artikel online veröffentlicht:
18. Mai 2022

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