{"@type": "dcat:Dataset", "accessLevel": "public", "bureauCode": ["009:25"], "contactPoint": {"@type": "vcard:Contact", "fn": "NIH", "hasEmail": "mailto:info@nih.gov"}, "description": "Background\n          Quality of life is an important concept which is subjective and personal; what is an acceptable quality of life to one may be 'worse than death' to another. The objective of this study was to develop and validate a questionnaire to assess relatives' perceptions and attitudes towards their terminal stage cancer patients' management (information disclosure, treatment choice, hospitalization and support-communication and care) including aspects regarding end-of-life and quality-of-life decisions.\n        \n        \n          Methods\n          The final study consisted of 146 relatives of advanced terminal stage cancer patients receiving palliation, attending a Pain Relief and Palliative Care Unit. The questionnaire incorporated 6 multi-item and 7 single-item scales, and was developed following a systematic review of measures appropriate for use in palliative care settings.\n        \n        \n          Results\n          Following analysis of the 25-item scale, the questionnaire has been validated as a shortened 21-item scale consisting of 5 multi-item and 5 single-item scales. Factor analysis was based upon information disclosure, hospitalization, and support-communication demonstrating Cronbach's alpha coefficients of 0.66, 0.5 and 0.70 respectively. Average item totals and inter-item scale correlations were between 0.62\u20130.70, with convergent validity correlations between 0.60\u20130.86. The questionnaire was well accepted by all subjects with an 8\u201310 minute completion time.\n        \n        \n          Conclusion\n          The shortened 21-item self-assessment questionnaire may provide acceptable and valid assessment of caregiver(s)/Greek cancer patients' relatives perceptions on palliative care.", "distribution": [{"@type": "dcat:Distribution", "description": "Visit the original government dataset for complete information, documentation, and data access.", "downloadURL": "https://www.ncbi.nlm.nih.gov/pmc/articles/PMC102762/", "mediaType": "text/html", "title": "Official Government Data Source"}], "identifier": "https://healthdata.gov/api/views/pb4y-d9dw", "issued": "2025-07-14", "keyword": ["end-of-life", "family-perception", "nih", "palliative-care", "terminal-cancer"], "landingPage": "https://healthdata.gov/d/pb4y-d9dw", "modified": "2025-09-06", "programCode": ["009:035"], "publisher": {"@type": "org:Organization", "name": "National Institutes of Health"}, "theme": ["NIH"], "title": "The families evaluation on management, care and disclosure for terminal stage cancer patients"}