The quest for treatment: Cancer patients' experience of Phase I clinical trials
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Abstract
Phase I clinical trials of new anticancer drugs and therapies, while critical to the development of new treatment, rarely benefit participants directly. Despite the potential risks and unknown benefits, however, many patients willingly enter these trials. Researchers know little about their motivation for doing so or the effect of their participation on their quality of life. The purpose of this study was to explore and describe, from the perspective of the patient, the essential structure of the lived experience of participating in Phase I clinical trials.
This study used a phenomenological approach, assuming that the way to understand a phenomenon of interest is through the subjective words of the person who has experienced it. Tape-recorded unstructured interviews were used to elicit participants' verbal descriptions of their experience. After informed consent was obtained, the Folstein Mini-Mental State examination was administered to screen out participants with cognitive impairment. Participants who passed the examination were interviewed. Whenever possible, the participants were interviewed twice: once soon after they are enrolled in a clinical trial, and once several weeks later.
Phenomenological analysis of the data revealed common categories and themes, which were then summarized and integrated into a consistent description of the meaning of the experience. The overall theme that emerged from the interviews was the Quest for Treatment. This theme captured the experience of most participants, who described being diagnosed with cancer, exhausting standard treatment and then beginning a quest for additional treatment, including clinical trials. The Quest for Treatment was seen as an active process that follows a typical course, marked by steps along the way. These steps emerged as categories across the narratives: (a) Taking Charge, (b) Deciding, (c) Living on a Trial, and (d) Dealing with Uncertainty. Although these categories are consistent with other recent studies of the perceptions of cancer patients on clinical trials, the overall theme of a quest for treatment has not previously been identified.
Description
This dissertation has also been disseminated through the ProQuest Dissertations and Theses database. Dissertation/thesis number: 9906195; ProQuest document ID: 304412292. The author still retains copyright.
Repository Posting Date
2020-10-13T20:35:16Z
Notes
This item has not gone through this repository's peer-review process, but has been accepted by the indicated university or college in partial fulfillment of the requirements for the specified degree.
Type Information
Type | Dissertation |
Acquisition | Proxy-submission |
Review Type | None: Degree-based Submission |
Format | Text-based Document |
Category Information
Evidence Level | Phenomenology |
Research Approach | Qualitative Research |
Keywords | Drug Trials; Patient Motivations; Trial Participations |
CINAHL Subject(s) | Clinical Trials; Decision Making, Patient; Life Experiences; Research Subjects |
Degree Information
Grantor | University of California, Los Angeles |
Advisor | Anderson, Nancy |
Level | PhD |
Year | 1998 |
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