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 patients and their families. Instruments can help to improve needs assessment. This review evaluates questionnaires for the systematic assessment of needs experienced by individual cancer patients for help, care, or support, as well as the needs of their family members.
METHODS: The MEDLINE and PsycLIT data bases were searched systematically. Questionnaires were evaluated by reviewing their contents and estimating their 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 were carefully constructed; their validity and reliability were satisfactory and well documented. However, in most questionnaires the needs for care were confounded by satisfaction with care, and the problems experienced by patients. Only one questionnaire for patients specifically addressed the need for help; none for family members was so specific. Data on the feasibility of questionnaires for use in regular care were scarce. Issues frequently omitted were spiritual issues, the personal needs of family members, and the continuity of care.
CONCLUSIONS: None of the instruments the authors found was complete for all dimensions of palliative care. Most instruments were constructed for research purposes and had not been tested for use in practical care. Further development of practical instruments based on a theoretical concept of needs assessment seems necessary. The feasibility of instruments for use in practical caregiving and their effects on the quality of care needs further research. Copyright 2000 American Cancer Society.