The families evaluation on management, care and disclosure for terminal stage cancer patients

BACKGROUND: 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. METHODS: 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. RESULTS: 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 0.62–0.70, with convergent validity correlations between 0.60–0.86. The questionnaire was well accepted by all subjects with an 8–10 minute completion time. CONCLUSION: The shortened 21-item self-assessment questionnaire may provide acceptable and valid assessment of caregiver(s)/Greek cancer patients' relatives perceptions on palliative care.