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Article 8, 4/2018

ORIGINAL PAPER

Patient-Reported Experiences with a Relicensed Generic: Thioguanine for the Treatment of Inflammatory Bowel Diseases
Melek Simsek1, Tineke M.L. Markus-de Kwaadsteniet2, Danielle van der Horst2, Chris J.J. Mulder1, Nanne K.H. de Boer1

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1) Department of Gastroenterology and Hepatology, Amsterdam UMC, Vrije Universiteit Amsterdam, AG&M Research Institute, Amsterdam
2) Dutch Crohn’s and Colitis organization (CCUVN), Woerden, The Netherlands

DOI: http://dx.doi.org/10.15403/jgld.2014.1121.274.tor

ABSTRACT
Background & Aim: Patient-reported outcomes and experiences are indicative of the impact and the quality of care. Thioguanine, a generic drug initially developed for leukemia, has been explored and relicensed as a certified treatment for patients with inflammatory bowel diseases (IBD). The patients‘ perception of this treatment has not been evaluated before. In this study, we aimed to assess self-reported experiences with thioguanine for IBD.
Methods: Questionnaires were sent out to members of the Dutch National Crohn‘s and Colitis patient organization. The Treatment Satisfaction with Medicines Questionnaire (SATMED-Q) was used to address questions regarding the satisfaction and impact of thioguanine therapy on the disease and their daily life. Furthermore, data on demographics, disease and (historical) treatment characteristics were collected. Openended questions were used for additional comments to the questionnaire.
Results: A total of 173 organization members (73% female) reported to be previous or current users of thioguanine. A total of 74% were satisfied with the effectiveness of thioguanine, whereas 5% were not. Eighty percent of the respondents were satisfied with the quality of care. A good or excellent impact on daily life was reported by 54%. A neutral or bad impact on daily life was reported by 40% and 6%, respectively. Improvement of disease activity was reported by 58%. This remained stable or worsened in 39% and 3%, respectively.
Conclusion: In this self-report survey, among thioguanine treated patients with IBD who had failed with traditional therapies, 80% reported satisfaction with medical care and 74% with the effectiveness of the therapy. In the evaluation of new or rediscovered therapies, patient-reported outcomes and experiences should be considered as a key instrument.
Key words: patient-reported outcomes – patient satisfaction – pharmacology – drug rediscovery – survey data – inflammatory bowel disease – Crohn’s disease – ulcerative colitis – thiopurines – thioguanine.
Abbreviations: IBD: inflammatory bowel diseases; NRH: nodular regenerative hyperplasia.