ABSTRACT
The primary aim of this study was to describe how patient-held-records was used in the regional palliative care program (OPTIM-study). The number of patient-held-records disseminated was 1,131 per region per year. A total of 15% and 16% of 706 physicians and 2,236 nurses in the region reported that they used patient-held-records disseminated during the study periods, respectively. In-depth interview identified themes [difficulty in dissemination], potential benefits of patient-held-records ([improved sense-of-control of patients], [improved information sharing among health care professionals]), and barriers ([lack of patient-perceived benefits and patient burden], [necessity that all health care professionals involved should be aware the value of patient-held-records and understand how to use it]). Of 11 hospitals who introduced patient-held-records, only 2 hospitals continued to use it during 3-year study periods. In conclusion, region-wide dissemination of patient-held-records seems to be unfeasible in many regions in Japan.
ABSTRACT
It is important to collect patients' and their families' opinions to provide good palliative care. This study aims to analyze the contents of free description provided by the survey for cancer patients and bereaved families, which was performed before the intervention of The Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) study. Requests for and good points of cancer treatment and palliative care were collected and classified. 1,493 advanced cancer patients and 1,658 bereaved families in four areas received the questionnaire, and 271 patients and 550 families filled in the free description. Cancer patients and bereaved families had demands for improved communication with medical staff, improved quality of pain relief, financial support of treatment, more educational activities on palliative care, and improved cooperation within and outside hospitals. Palliat Care Res 2011; 6(2): 237-245