title: Content and spiritual items of quality-of-life instruments appropriate for use in palliative care: a review.
abstract: Despite the importance of palliative care and quality of life (QoL) as an outcome measure, little research evaluated the QoL instruments that are used in end-of-life situations. We evaluated the content of and domains measured by QoL instruments that are suitable for use in palliative care and how the domain of spirituality was operationalized in these instruments. We conducted two literature reviews. One identified the domains that are most important for the QoL of incurably ill patients and resulted in a framework of QoL domains. The other review identified 29 instruments measuring (at least one domain of) QoL that are appropriate for use in palliative care. Most of the instruments covered only one or two QoL domains, and none of the instruments covered all QoL domains included in the framework. Among the 29 instruments, 15 included items on spirituality. We also categorized the spirituality items contained in the instruments into the spirituality aspects in the framework. Most spirituality items concerned the meaning or purpose of life. This study provides information about the domains included in QoL instruments that are suitable for use in palliative care and provides insights into the differences in content, which can be helpful when choosing an instrument for use in palliative care.
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands. g.albers@vumc.nl
authors.forename: Gwenda
authors.initials: G
authors.lastname: Albers
authors.forename: Michael A
authors.initials: MA
authors.lastname: Echteld
authors.forename: Henrica C W
authors.initials: HC
authors.lastname: de Vet
authors.forename: Bregje D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
authors.forename: Mecheline H M
authors.initials: MH
authors.lastname: van der Linden
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
mesh_terms: D006801:Humans; D010166:Palliative Care / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D029181:Spirituality; D011795:Surveys and Questionnaires