Evaluation of quality-of-life measures for use in palliative care: a systematic review
Authors:
Albers, G., Echteld, M. A., de Vet, H. C. W., Onwuteaka-Philipsen, B. D., van der Linden, M. H. M., and Deliens, L.
Abstract:
Purpose: In this literature review we evaluated the feasibility and clinimetric quality of quality-of-life (QoL) measurement instruments suitable for use in palliative care. Methods: We conducted a systematic literature review to identify instruments measuring (at least one domain of) QoL. We selected articles that present data on patients receiving palliative care and at least one measurement property. A checklist was used to describe the characteristics of the instruments, and a widely accepted rating list was used to evaluate the clinimetric aspects. Results: 29 instruments were identified and evaluated, most of which were targeted at palliative patients in general. None of the instruments demonstrated satisfactory results for all measurement properties. Fourteen instruments received positive ratings for construct validity. Thirteen instruments were tested for reliability, but only two were tested adequately and had positive results (ICC>0.70). Responsiveness was not tested adequately for any of the instruments. Very few of the studies provided information on the interpretation of the scores. Overall, the MQOL, followed by the QUAL-E and the QODD, received the best ratings for their measurement properties. Conclusions: Many measurement instruments were identified, but most had not yet been adequately evaluated. The evaluation of existing instruments with good content validity should have priority over the development of new instruments.
Cognitive/mental state Emotional state Physical state
Functional status:
Cognitive/mental functioning Physical functioning Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Age:
Adults (18-65) Children (0-18) Seniors (65+)
Disease:
Certain conditions originating in the perinatal period and related symptoms Certain infections and parasitic diseases and related symptoms Congenital malformations, deformations and chromosomal abnormalities and related symptoms Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism Diseases of and symptoms related to the circulatory system Diseases of and symptoms related to the digestive system Diseases of and symptoms related to the ear and mastoid process Diseases of and symptoms related to the eye and adnexa Diseases of and symptoms related to the genitourinary system Diseases of and symptoms related to the musculoskeletal system and connective tissue Diseases of and symptoms related to the nervous system Diseases of and symptoms related to the respiratory system Diseases of and symptoms related to the skin and subcutaneous tissue Endocrine, nutritional and metabolic diseases and related symptoms External causes of morbidity and mortality Injury, poisoning and certain other consequences of external causes Mental and behavioural disorders and related symptoms Neoplasms and related symptoms Pregnancy, childbirth and puerperium and related symptom Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified
