Utility of an adverse drug event database based on the narrative accounts of patients with breast cancer.

Patient narratives of adverse drug events (ADEs) often differ from the symptoms listed on the package inserts of pharmaceutical products using common ADE terminology and could be a source of great comfort to patients with the same disease. To explore this idea, we analyzed written narratives obtained from 48 patients with breast cancer using the NPO Corporation Database of Individual Patients' Experiences, Japan (DIPEx-Japan). Our analysis aimed to determine the utility of an "Adverse Drug Event Database" for use in clinical settings as a novel source of disease information in patients' own words. An analysis of transcripts from 29 patients, in which they recounted their treatment drugs and the time of onset and duration of ADEs in great detail, revealed several discrepancies between the language they used to describe various side effects and the standard ADE terminology on package inserts. We conclude that the language used to describe ADEs on package inserts is insufficient for helping patients as they struggle to recognize, internalize, and overcome ADEs, and argue the need for available, detailed information in the words of real patients about the nature of the ADEs predicted, as well as their clinical course and duration. Such information would be invaluable in supplementing the standardized language used on package inserts. Databases of patients' narrative accounts of ADEs are needed as information sources that can be reliably disseminated among patients.

The meaning of life prognosis disclosure for Japanese cancer patients: a qualitative study of patients' narratives.

OBJECTIVE: Recently, disclosure of cancer diagnosis is common in Japan, but significant variability in patient preference of prognostic disclosure poses difficult questions for doctors. The aim of this study was to understand the reasons for wanting or not wanting to know life prognosis and how the information was interpreted and utilized by the patients. METHODS: The study was based on narrative interviews with 42 women with breast cancer and 49 men with prostate cancer, in varying stages. A qualitative and interpretive approach was taken, combining thematic analysis with constant comparison. RESULTS: While some of the participants voluntarily asked for prognosis to prepare themselves for the end of life, others were shocked by unexpected and unilateral disclosure. Some obtained prognostic information from books and websites. Some preferred to remain unaware of life prognosis, partly because they feared it would become a self-fulfilling prophecy. DISCUSSION: The major problem underlying the practice of prognostic disclosure is the absence of mutual understanding of how such information will be utilized. These findings affirm that it should be used to empower patients to participate in the decision-making process.

Distress of inpatients with terminal cancer in Japanese palliative care units: from the viewpoint of spirituality.

A qualitative study was conducted in an attempt to improve our understanding of the spiritual distress of terminally ill cancer patients in Japan. The subjects were inpatients at four approved palliative care units in Japan. The patients were interviewed and they expressed their own experiences in which spirituality was considered to be identifiable. Literal records of the interviews were analyzed using constant comparative analyses as proposed in relation to the grounded theory approach. The analysis included 11 inpatients and a variety of expressions of distress were obtained. After the conditions of the subjects were evaluated in order to search for common factors related to distress, consciousness of the gap between the patient's aspirations and the present situation were found to cause gap-induced distress. Distress was classified into three categories: distress due to the gap between the present situation and how the individual wanted to live, how the individual wished to die, and the individual's wish to maintain relations with others. The aspirations causing the gap were then interpreted from the viewpoint of spirituality as "anchors in life" for Japanese patients with terminal cancer. It was also revealed that in patients who possessed pictures of how they wished to die as their "anchors in life" and who were in a severe physical condition, distress increased and they became confused after their physical symptoms were relieved following admission to PCU.