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Abstract: No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a questionnaire through: a) a literature review of the concepts and elements of autonomy; b) qualitative analysis of interviews with patients and professional carers; c) the construction of questionnaires; and d) testing validity and reliability. The basic conceptual elements were: dependency, losing control, and limitation of activities. Patients with disseminated cancer in the palliative stage of the disease (n = 64) participated in the study. A 9-item Patient Autonomy Questionnaire (PAQ) was developed (Cronbach''s alpha 0.86), followed by a concise 4-item version (PAQs) (Cronbach''s alpha 0.71). Autonomy problems were more prevalent than pain problems. The development of the PAQ may help draw attention to autonomy problems. [Copyright &y& Elsevier]

This study describes a new clinical tool for needs assessment in palliative care: the Problems and Needs in Palliative Care questionnaire (PNPC). It was developed to support the provision of care tailored to the specific demands of patients, which only can be provided when their needs are clearly identified. To test validity and reliability, 64 patients with metastatic cancer living at home completed the PNPC. Of 140 initial items, 2 were deleted because of low response. No important topics were missing. Dimensions were proposed to organize the problems and needs in a logical and practical array for use in individual patients, and to enable statistical analysis of patient-groups. Reliability analysis supported the proposed dimensions, with Cronbach''s alpha coefficient >0.70 for dimensions with ≥5 items, and alpha >0.65 for the 3- and 4-item dimensions. However, the dimensions ‘physical symptoms’ and ‘social issues’ lacked coherency with some low item-total correlations. The PNPC demonstrated convergent validity with the European Organization for Research and Treatment of Cancer (EORTC) and COOP-WONCA quality-of-life measures. These data are a first step in validating the PNPC, although the ‘social issues’ dimension needs reconsideration. Further studies are needed to evaluate clinical use. [Copyright &y& Elsevier]