文章基本信息

标题：Experiences and perspectives on the GIST patient journey
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作者：Nancy Macdonald ; Ari Shapiro ; Christina Bender 等
期刊名称：Patient Preference and Adherence
印刷版ISSN：1177-889X
电子版ISSN：1177-889X
出版年度：2012
卷号：6
页码：253-262
DOI：10.2147/PPA.S24617
出版社：Dove Medical Press Ltd
摘要：Purpose: The tyrosine kinase inhibitor (TKI) imatinib has improved outcomes for patients with unresectable or metastatic gastrointestinal stromal tumors (GIST), and for patients receiving adjuvant therapy following GIST resection. This qualitative study explored the experiences and emotions of patients through GIST diagnosis, treatment initiation, disease control, and in some patients, loss of response and therapy switch. Patients and methods: Ethnographic investigations were conducted, including semi-structured qualitative interviews of patients with resected or metastatic/unresectable GIST and their caregivers, from Canada (n = 15); the United States (n = 10); and Brazil, France, Germany, Russia, and Spain (n = 5 each). Some interviewees also kept 7-day photo journals. Responses were qualitatively analyzed to identify gaps and unmet needs where communication about disease, treatments, and adherence could be effective. Results: Patients shared common experiences during each stage of disease management ( crisis, hope, adaptation, new normal, and uncertainty ). Patients felt a sense of crisis during diagnosis, followed by hope upon TKI therapy initiation. Over time, they came to adapt to their new lives ( new normal ) with cancer. With each follow-up, patients confronted the uncertainty of becoming TKI resistant and the possible need to switch therapy. During uncertainty many patients sought new information regarding GIST. Cases of disease progression and drug switching caused patients to revert to crisis and restart their emotional journey. Patients with primary or unresectable/metastatic GIST shared similar journeys, especially regarding uncertainty , although differences in the scope and timing of phases were observed. Strategies patients used to remain adherent included obtaining family support, setting reminder mechanisms, taking medicine at routine times, and storing medicine in prominent places. Conclusions: Physicians and support staff can manage patient expectations and encourage adherence to therapy, which may facilitate optimal patient outcomes. Patient education about current GIST developments and adherence across all phases of the patient journey are of benefit.
关键词：Gastrointestinal stromal tumors; medication adherence; compliance; imatinib; qualitative study; ethnographic investigation