Assessment of the need for palliative care as perceived by individual cancer patients and their families - A review of instruments for improving patient participation in palliative care

BACKGROUND. Palliative care should fit the needs of individual cancer patie nts and their families. Instruments can help to improve needs assessment. T his review evaluates questionnaires for the systematic assessment of needs experienced by individual cancer patients for help, care, or support, as we ll as the needs of their family members. METHODS, The MEDLINE and PsycLIT data bases were searched systematically. Q uestionnaires were evaluated by reviewing their contents and estimating the ir validity, reliability, and feasibility for use in caregiving practice. RESULTS, Analysis of the 471 articles identified from the searches yielded 9 questionnaires for the assessment of patients' needs and 6 questionnaires for the assessment of family members' needs. Most of these instruments wer e carefully constructed; their validity and reliability were satisfactory a nd well documented. However, in most questionnaires the needs for care were confounded by satisfaction with care, and the problems experienced by pati ents. Only one questionnaire for patients specifically addressed the need f or help; none for family members was so specific. Data on the feasibility o f questionnaires for use in regular care were scarce. Issues frequently omi tted were spiritual issues, the personal needs of family members, and the c ontinuity of care. CONCLUSIONS, None of the instruments the authors found was complete for all dimensions of palliative care. Most instruments were constructed for resea rch purposes and had not been rested for use in practical care. Further dev elopment of practical instruments based on a theoretical concept of needs a ssessment seems necessary. The feasibility of instruments for use in practi cal caregiving and their effects on the quality of care needs further resea rch. (C) 2000 American Cancer Society.