Real-world data about emotional stress, disability and need for social care in a German IBD patient cohort


Autoři: Alica Kubesch aff001;  Patric Boulahrout aff002;  Natalie Filmann aff003;  Irina Blumenstein aff001;  Johannes Hausmann aff001
Působiště autorů: Department of Internal Medicine 1, Goethe-University Hospital, Frankfurt, Germany aff001;  Department 4 Social Work and Health, Frankfurt University of Applied Sciences, Frankfurt, Germany aff002;  Institute of Biostatistics and Math Modeling, Goethe-University Hospital, Frankfurt, Germany aff003
Vyšlo v časopise: PLoS ONE 15(1)
Kategorie: Research Article
doi: 10.1371/journal.pone.0227309

Souhrn

To date, there is insufficient insight into inflammatory bowel disease (IBD)-associated stress, recognized disability, and contact with the social care system. We aimed to assess these parameters in IBD patients and a non-IBD control group, who were invited to participate in an online survey developed specifically for this study (www.soscisurvey.de) with the help of IBD patients. 505 IBD patients and 166 volunteers (i.e., control group) participated in the survey. IBD patients reported significantly increased levels of stress within the last six months and five years (p<0.0001) and were more likely to have a recognized disability (p<0.0001). A low academic status was the strongest indicator of a disability (p = 0.006). Only 153 IBD patients (30.3%) reported contact with the social care system, and a disability was the strongest indicator for this (p<0.0001). Our study provides data on stress and disability in a large unselected German IBD cohort. We showed that patients with IBD suffer more often from emotional stress and more often have a recognized disability. As only about 1/3 of the patients had come into contact with the social care system and the corresponding support, this patient group is undersupplied in this area.

Klíčová slova:

Crohn's disease – Disabilities – Emotions – Inflammatory bowel disease – Physicians – Psychological stress – Surveys – Ulcerative colitis


Zdroje

1. Ghosh S, Mitchell R. Impact of inflammatory bowel disease on quality of life: Results of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) patient survey. J Crohn’s Colitis. 2007;Sep;1(1):10–20.

2. Muller KR, Prosser R, Bampton P, Mountifield R, Andrews JM. Female gender and surgery impair relationships, body image, and sexuality in inflammatory bowel disease: Patient perceptions. Inflamm Bowel Dis. 2010;Apr;16(4):657–63. doi: 10.1002/ibd.21090 19714755

3. Sellin J. Disability in IBD: The devil is in the details. Inflammatory Bowel Diseases. 2010;Jan;16(1):23–6. doi: 10.1002/ibd.21014 19526528

4. Spekhorst LM, Oldenburg B, Van Bodegraven AA, De Jong DJ, Imhann F, Van De Meulen-De Jong AE, et al. Prevalence of-And risk factors for work disability in Dutch patients with inflammatory bowel disease. World J Gastroenterol. 2017;(Dec 14;23(46):8182–8192.). doi: 10.3748/wjg.v23.i46.8182 29290654

5. Vester-Andersen MK, Prosberg M V., Vind I, Andersson M, Jess T, Bendtsen F. Low Risk of Unemployment, Sick Leave, and Work Disability Among Patients with Inflammatory Bowel Disease. Inflamm Bowel Dis. 2015;Oct;21(10):2296–303. doi: 10.1097/MIB.0000000000000493 26164663

6. MacKner LM, Bickmeier RM, Crandall W V. Academic achievement, attendance, and school-related quality of life in pediatric inflammatory bowel disease. J Dev Behav Pediatr. 2012;Feb;33(2):106–11. doi: 10.1097/DBP.0b013e318240cf68 22267107

7. Carreon SA, Bugno LT, Wojtowicz AA, Greenley RN. School Functioning in Adolescents with Inflammatory Bowel Diseases: An Examination of Disease and Demographic Correlates. Inflamm Bowel Dis. 2018;Jul 12;24(8):1624–1631. doi: 10.1093/ibd/izy026 29718311

8. Assa A, Ish-Tov A, Rinawi F, Shamir R. School attendance in children with functional abdominal pain and inflammatory bowel diseases. J Pediatr Gastroenterol Nutr. 2015;Nov;61(5):553–7. doi: 10.1097/MPG.0000000000000850 25950089

9. Taft TH, Keefer L. A systematic review of disease-related stigmatization in patients living with inflammatory bowel disease. Clinical and Experimental Gastroenterology. 2016. p. Mar 7;9:49–58. doi: 10.2147/CEG.S83533 27022294

10. Büsch K, da Silva SA, Holton M, Rabacow FM, Khalili H, Ludvigsson JF. Sick leave and disability pension in inflammatory bowel disease: A systematic review. Journal of Crohn’s and Colitis. 2014. p. Nov;8(11):1362–77. doi: 10.1016/j.crohns.2014.06.006 25001582

11. Høivik ML, Moum B, Solberg IC, Henriksen M, Cvancarova M, Bernklev T. Work disability in inflammatory bowel disease patients 10 years after disease onset: Results from the IBSEN study. Gut. 2013;Mar;62(3):368–75. doi: 10.1136/gutjnl-2012-302311 22717453

12. Choi K1, Chun J2, 3, Han K4, Park S5, Soh H6, Kim J7, Lee J8, Lee HJ9, Im JP10, Kim JS11 12. Risk of Anxiety and Depression in Patients with Inflammatory Bowel Disease: A Nationwide, Population-Based Study. J Clin Med. 2019;May 10;8(5).

13. van den Brink G, Stapersma L, Vlug LE, Rizopolous D, Bodelier AG, van Wering H, et al. Clinical disease activity is associated with anxiety and depressive symptoms in adolescents and young adults with inflammatory bowel disease. Aliment Pharmacol Ther. 2018;Aug;48(3):358–369. doi: 10.1111/apt.14832 29897134

14. Lewis K, Marrie RA, Bernstein CN, Graff LA, Patten SB, Sareen J, et al. The Prevalence and Risk Factors of Undiagnosed Depression and Anxiety Disorders Among Patients With Inflammatory Bowel Disease. Inflamm Bowel Dis. 2019;19. pii: izz045. doi: 10.1093/ibd/izz045 [Epub ah. 30888037

15. World Health Organization. International Classification of Functioning, Disability and Health (ICF). Geneva: WHO, 2001. http://www.who.int/classifications/icf/en (accessed 27 Dec 2010).

16. Romberg-Camps MJL, Bol Y, Dagnelie PC, Hesselink-Van De Kruijs MAM, Kester ADM, Engels LGJB, et al. Fatigue and health-related quality of life in inflammatory bowel disease: Results from a population-based study in the Netherlands: The IBD-South Limburg cohort. Inflamm Bowel Dis. 2010;Dec;16(12):2137–47. doi: 10.1002/ibd.21285 20848468

17. Haapamäki J, Roine RP, Sintonen H, Turunen U, Färkkilä MA, Arkkila PET. Health-related quality of life in inflammatory bowel disease measured with the generic 15D instrument. Qual Life Res. 2010;Aug;19(6):919–28. doi: 10.1007/s11136-010-9650-4 20361263

18. Stjernman H, Tysk C, Almer S, Ström M HH. Worries and concerns in a large unselected cohort of patients with Crohn’s disease. Scand J Gastroenterol. 2010;Jun;45(6):696–706. doi: 10.3109/00365521003734141 20334474

19. Freckmann M, Seipp A, Laass MW, Koletzko S, Claßen M, Ballauff A, et al. School-related experience and performance with inflammatory bowel disease: Results from a cross-sectional survey in 675 children and their parents. BMJ Open Gastroenterol. 2018;Nov 24;5(1):e000236. doi: 10.1136/bmjgast-2018-000236 30538821

20. Lönnfors S, Vermeire S, Greco M, Hommes D, Bell C, Avedano L. IBD and health-related quality of life—Discovering the true impact. J Crohn’s Colitis. 2014;Oct;8(10):1281–6.

21. Sainsbury A, Heatley R V. Review article: Psychosocial factors in the quality of life of patients with inflammatory bowel disease. Alimentary Pharmacology and Therapeutics. 2005. p. Mar 1;21(5):499–508. doi: 10.1111/j.1365-2036.2005.02380.x 15740531

22. Irvine EJ. Quality of life of patients with ulcerative colitis: Past, present, and future. Inflammatory Bowel Diseases. 2008. p. Apr;14(4):554–65. doi: 10.1002/ibd.20301 17973299

23. Ramos A, Calvet X, Sicilia B, Vergara M, Figuerola A, Motos J, et al. IBD-related work disability in the community: Prevalence, severity and predictive factors. A cross-sectional study. United Eur Gastroenterol J. 2015;Aug;3(4):335–42.

24. Rubin DT, Dubinsky MC, Panaccione R, Siegel CA, Binion DG, Kane S V., et al. The impact of ulcerative colitis on patients’ lives compared to other chronic diseases: A patient survey. Dig Dis Sci. 2010;Apr;55(4):1044–52. doi: 10.1007/s10620-009-0953-7 20155319

25. Louis E, Dotan I, Ghosh S, Mlynarsky L, Reenaers C, Schreiber S. Optimising the inflammatory bowel disease unit to improve quality of care: Expert recommendations. Journal of Crohn’s and Colitis. 2015. p. Aug; 9(8): 685–691. doi: 10.1093/ecco-jcc/jjv085 25987349

26. van der Eijk I, Vlachonikolis IG, Munkholm P, Nijman J, Bernklev T, Politi P, et al. The role of quality of care in health-related quality of life in patients with IBD. Inflamm Bowel Dis. 2004;Jul;10(4):392–8. doi: 10.1097/00054725-200407000-00010 15475747

27. Hommel KA, Baldassano RN. Brief report: Barriers to treatment adherence in pediatric inflammatory bowel disease. J Pediatr Psychol. 2010;Oct;35(9):1005–10. doi: 10.1093/jpepsy/jsp126 20026567

28. Plevinsky JM, Greenley RN, Fishman LN. Self-management in patients with inflammatory bowel disease: Strategies, outcomes, and integration into clinical care. Clinical and Experimental Gastroenterology. 2016. p. Aug 23;9:259–67. doi: 10.2147/CEG.S106302 27601930

29. DiMatteo MR. Social Support and Patient Adherence to Medical Treatment: A Meta-Analysis. Health Psychology. 2004. p. Mar;23(2):207–18. doi: 10.1037/0278-6133.23.2.207 15008666

30. Althubaiti A. Information bias in health research: Definition, pitfalls, and adjustment methods. Journal of Multidisciplinary Healthcare. 2016. p. May 4;9:211–7. doi: 10.2147/JMDH.S104807 27217764

31. Helbig S, Backhaus J. “Sex differences in a real academic stressor, cognitive appraisal and the cortisol response.” Physiol Behav. 2017;Oct 1;179:67–74. doi: 10.1016/j.physbeh.2017.05.027 28546084

32. Belfer I. Pain in women. Agri. 2017. p. Apr;29(2):51–54. doi: 10.5505/agri.2017.87369 28895988


Článek vyšel v časopise

PLOS One


2020 Číslo 1