Patient-Reported Experiences with a Relicensed Generic: Thioguanine for the Treatment of Inflammatory Bowel Diseases

M Simsek, T. M. L. Markus-de Kwaadsteniet, D. van der Horst, CJJ Mulder, KHN de Boer

Research output: Contribution to journalArticleAcademic

Abstract

BACKGROUND AND 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. Open-ended 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
Original languageEnglish
Pages (from-to)385
Number of pages389
JournalJournal of Gastrointestinal and Liver Diseases
Volume27
Issue number4
DOIs
Publication statusPublished - Dec 2018

Cite this

@article{a34c865b14b54081a5f437c06d92c6bd,
title = "Patient-Reported Experiences with a Relicensed Generic: Thioguanine for the Treatment of Inflammatory Bowel Diseases",
abstract = "BACKGROUND AND 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. Open-ended 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",
keywords = "patient-reported outcomes, patient satisfaction, pharmacology, drug rediscovery, survey data, inflammatory bowel disease, Crohn’s disease, thioguanine, ulcerative colitis, thiopurines",
author = "M Simsek and {Markus-de Kwaadsteniet}, {T. M. L.} and {van der Horst}, D. and CJJ Mulder and {de Boer}, KHN",
year = "2018",
month = "12",
doi = "10.15403/jgld.2014.1121.274.tor",
language = "English",
volume = "27",
pages = "385",
journal = "Journal of Gastrointestinal and Liver Diseases",
issn = "1841-8724",
publisher = "Romanian Society of Gastroenterology",
number = "4",

}

Patient-Reported Experiences with a Relicensed Generic: Thioguanine for the Treatment of Inflammatory Bowel Diseases. / Simsek, M; Markus-de Kwaadsteniet, T. M. L.; van der Horst, D.; Mulder, CJJ; de Boer, KHN.

In: Journal of Gastrointestinal and Liver Diseases, Vol. 27, No. 4, 12.2018, p. 385.

Research output: Contribution to journalArticleAcademic

TY - JOUR

T1 - Patient-Reported Experiences with a Relicensed Generic: Thioguanine for the Treatment of Inflammatory Bowel Diseases

AU - Simsek, M

AU - Markus-de Kwaadsteniet, T. M. L.

AU - van der Horst, D.

AU - Mulder, CJJ

AU - de Boer, KHN

PY - 2018/12

Y1 - 2018/12

N2 - BACKGROUND AND 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. Open-ended 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

AB - BACKGROUND AND 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. Open-ended 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

KW - patient-reported outcomes

KW - patient satisfaction

KW - pharmacology

KW - drug rediscovery

KW - survey data

KW - inflammatory bowel disease

KW - Crohn’s disease

KW - thioguanine

KW - ulcerative colitis

KW - thiopurines

U2 - 10.15403/jgld.2014.1121.274.tor

DO - 10.15403/jgld.2014.1121.274.tor

M3 - Article

VL - 27

SP - 385

JO - Journal of Gastrointestinal and Liver Diseases

JF - Journal of Gastrointestinal and Liver Diseases

SN - 1841-8724

IS - 4

ER -