Lebensqualität von Menschen mit einem künstlichen Darmausgang in Deutschland

Zusammenfassung

Hintergrund Das Vorhandensein eines Stomas kann einen erheblichen Einfluss auf die Lebensqualität (QoL) haben. Das Ziel dieser Arbeit war die Erfassung der QoL von Menschen mit einem Stoma in Deutschland

Methode Eine offene Internetbefragung mit Hilfe des validierten Gastrointestinalen Quality of Life Index (GIQLI) nach Eypasch wurde durchgeführt. Eingeschlossen wurden vollständig ausgefüllte Fragebögen von Teilnehmenden ≥18 Jahren, deren Stomaoperation ≥3 Monate zurücklag.

Ergebnisse Die 521 eingeschlossenen Teilnehmenden (79,3% weiblich) waren im Median 50 Jahre alt (Spanne: 19–83) und hatten seit 3 Jahren im Median ein Stoma (3 Monate–58 Jahre). Die häufigsten Indikationen für das Stoma waren Morbus Crohn (MC: 36,5%), Darmkrebs (19,8%) und Colitis Ulcerosa (CU: 18,2%). Der QoL-Score betrug durchschnittlich 94,8 ± 24,6, wobei höhere Werte einer höheren Lebensqualität entsprechen, bei einer Spannweite von 0 bis 144 und gesunde Menschen einen Referenzwert von 125,8 haben. Einschränkungen traten besonders bei dem Durchschlafen, der Müdigkeit, dem Kräftezustand, der Ausdauer, der Fitness und dem Sexualleben auf. Unter allen Stomaträgern hatten Teilnehmende mit CU (103,0 ± 24,5), Darmkrebs (99,2 ± 21,7) und MC (95,0 ± 22,8) die höchsten GIQLI-Werte im Durchschnitt.

Diskussion Die Ergebnisse dieser Studie bestätigen, dass die QoL bei Menschen mit einem Stoma schlechter ist verglichen mit Gesunden. Die Untergruppen der Stomaträger mit CU, MC und nach Darmkrebsoperation haben eine höhere QoL als Stomaträger mit anderer Ursache.

Abstract

Background The presence of an ostomy may have a serious impact on the quality of life (QoL). The aim of this study was to evaluate the QoL of ostomates in Germany.

Method An online survey was performed using the validated Gastrointestinal Quality of Life Index (GIQLI) by Eypasch et al. Ostomates ≥ 18 yrs. with an ostomy duration ≥ 3 months were eligible to participate.

Results Completed questionnaires from 519 participants (79.3 % female) with a median age of 50 yrs. (range 19–83 yrs.) and a median ostomy duration of 3 yrs. (range 3 months–58 yrs.) were analyzed. The most common indications for an ostomy were Crohnʼs disease (36.5 %), colorectal cancer (19.8 %) and ulcerative colitis (18.2 %). The mean GIQLI-Score in the study population was 94.8 ± 24.6, with higher scores corresponding with better QoL and healthy individuals reach 125.8. Limitations were recorded with regard to sleep, tiredness, energy level, endurance, fitness and sexuality. Individuals with a stoma due to Colitis (103,0 ± 24,5), colorectal cancer (99,2 ± 21,7) and Crohnʼs (95,0 ± 22,8) had the highest mean GIQLI-scores amongst all ostomates.

Discussion The findings of this study confirm that ostomates have a reduced QoL compared to the healthy population. Amongst all ostomates, those with colitis, colorectal cancer and Crohnʼs have a better QoL compared to ostomy carriers with other diagnoses.

Schlüsselwörter

Künstlicher Darmausgang - Intestinales Stoma - Lebensqualität - Kolostoma - Ileostoma

Keywords

ostomy - intestinal stoma - quality of life - colostoma - ileostoma

Publication History

Received: 07 December 2022

Accepted after revision: 27 August 2023

Article published online:
26 September 2023

• Literatur

• 1 Ambe PC, Kurz NR, Nitschke C. et al. Intestinal Ostomy. Dtsch Arztebl Int 2018; 115 (11) 182-187
• 2 Plasencia A, Bahna H. Complications and Dilemmas in Colorectal Surgery: Diverting Ostomy: For Whom, When, What, Where, and Why. Clinics in colon and rectal surgery 2019; 32 (03) 171
• 3 Weber GF, Rosenberg R, Murphy JE. et al. Multimodal treatment strategies for locally advanced rectal cancer. Expert review of anticancer therapy 2012; 12 (04) 481-494
• 4 Duchesne JC, Wang Y-Z, Weintraub SL. et al. Stoma complications: A multivariate analysis/discussion. The American Surgeon 2002; 68 (11) 961-966
• 5 Peter AC. Strategien zur Vermeidung stomaassoziierter Komplikationen. Chirurgische Praxis 2020; 87 (03) 385-396
• 6 Ambe PC. Stomakomplikationen. Chirurgie des intestinalen Stomas. In: . Berlin, Heidelberg: Springer; 2020: 33-48
• 7 Vonk-Klaassen SM, de Vocht HM, den Ouden ME. et al. Ostomy-related problems and their impact on quality of life of colorectal cancer ostomates: a systematic review. Quality of life research 2016; 25 (01) 125-133
• 8 Frohlich DO, Zmyslinski-Seelig AN. How Uncover Ostomy challenges ostomy stigma, and encourages others to do the same. New media & society 2016; 18 (02) 220-238
• 9 Smith DM, Loewenstein G, Rozin P. et al. Sensitivity to disgust, stigma, and adjustment to life with a colostomy. Journal of research in personality 2007; 41 (04) 787-803
• 10 Kasparek M, Schobel T, Englert G. et al. Längerfristiger Einfluss eines Ileostomas auf die Lebensqualität. Zeitschrift für Gastroenterologie 2009; 47 (10) K12
• 11 Schiergens TS, Hoffmann V, Schobel TN. et al. Long-term quality of life of patients with permanent end ileostomy: results of a nationwide cross-sectional survey. Diseases of the Colon & Rectum 2017; 60 (01) 51-60
• 12 Eypasch E, Williams J, Wood-Dauphinee S. et al. Gastrointestinal Quality of Life Index: development, validation and application of a new instrument. British Journal of Surgery 1995; 82 (02) 216-222
• 13 Nicholas DB, Swan SR, Gerstle TJ. et al. Struggles, strengths, and strategies: an ethnographic study exploring the experiences of adolescents living with an ostomy. Health and quality of life outcomes 2008; 6 (01) 1-8
• 14 Sprunk E, Alteneder RR. The impact of an ostomy on sexuality. Clinical journal of oncology nursing 2000; 4 (02) 85-88
• 15 Sandblom G, Videhult P, Karlson B-M. et al. Validation of Gastrointestinal Quality of Life Index in Swedish for assessing the impact of gallstones on health-related quality of life. Value in Health 2009; 12 (01) 181-184
• 16 Schwenk W, Neudecker J, Haase O. et al. Comparison of EORTC quality of life core questionnaire (EORTC-QLQ-C30) and gastrointestinal quality of life index (GIQLI) in patients undergoing elective colorectal cancer resection. International journal of colorectal disease 2004; 19 (06) 554-560
• 17 Maydick-Youngberg D. A Descriptive Study to Explore the Effect of Peristomal Skin Complications on Quality of Life of Adults With a Permanent Ostomy. Ostomy/wound management 2017; 63 (05) 10-23
• 18 Kim YM, Jang HJ, Lee YJ. The effectiveness of preoperative stoma site marking on patient outcomes: A systematic review and meta‐analysis. Journal of Advanced Nursing 2021;
• 19 Kugler CM, Breuing J, Rombey T. et al. The effect of preoperative stoma site marking on risk of stoma-related complications in patients with intestinal ostomy – protocol of a systematic review and meta-analysis. Systematic Reviews 2021; 10 (01) 1-8
• 20 Cakir SK, Ozbayir T. The effect of preoperative stoma site marking on quality of life. Pakistan journal of medical sciences 2018; 34 (01) 149
• 21 Baykara ZG, Demir SG, Karadag A. et al. A multicenter, retrospective study to evaluate the effect of preoperative stoma site marking on stomal and peristomal complications. Ostomy Wound Manage 2014; 60 (05) 16-26
• 22 Anaraki F, Vafaie M, Behboo R. et al. Quality of life outcomes in patients living with stoma. Indian journal of palliative care 2012; 18 (03) 176
• 23 Krouse R, Grant M, Ferrell B. et al. Quality of life outcomes in 599 cancer and non-cancer patients with colostomies. Journal of Surgical Research 2007; 138 (01) 79-87
• 24 Phatak UR, Li LT, Karanjawala B. et al. Systematic review of educational interventions for ostomates. Diseases of the Colon & Rectum 2014; 57 (04) 529-537
• 25 Díaz CC, Zambrano SMH, Muñoz BM. et al. Stoma care nursesʼ perspectives on the relative significance of factors influencing ostomatesʼ quality of life. Gastrointestinal Nursing 2018; 16 (03) 28-33
• 26 Person B, Ifargan R, Lachter J. et al. The impact of preoperative stoma site marking on the incidence of complications, quality of life, and patientʼs independence. Diseases of the colon & rectum 2012; 55 (07) 783-787
• 27 Lyons AS. Ileostomy and colostomy support groups. The Mount Sinai journal of medicine, New York 2001; 68 (02) 110-112
• 28 Summers MC. The effect of ostomate-to-ostomate support on psychosocial adaptation to stoma. 2018
• 29 Ambe PC, Kugler CM, Breuing J. et al. The effect of preoperative stoma site marking on risk of stoma‐related complications in patients with intestinal ostomy – A systematic review and meta‐analysis. Colorectal Disease 2022;
• 30 OʼLeary K, Vallejos EP, Coulson N. et al. The perceptions of social and information privacy risks of Inflammatory Bowel Disease patients using social media platforms for health-related support. arXiv preprint arXiv:200803541 2020;