title: Patient autonomy problems in palliative care: systematic development and evaluation of a questionnaire.
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.
authors.affiliation: Center of Quality of Care Research, University of Nijmegen, Nijmegen, The Netherlands.
authors.forename: Myrra J F J
authors.initials: MJ
authors.lastname: Vernooij-Dassen
authors.forename: Bart H P
authors.initials: BH
authors.lastname: Osse
authors.forename: Egbert
authors.initials: E
authors.lastname: Schadé
authors.forename: Richard P T M
authors.initials: RP
authors.lastname: Grol
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D026684:Personal Autonomy; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires