COSMIN database

Evaluation of quality-of-life measures for use in palliative care: a systematic review

Albers, G., Echteld, M. A., de Vet, H. C. W., Onwuteaka-Philipsen, B. D., van der Linden, M. H. M., and Deliens, L.
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.
<Go to ISI>://WOS:000273491400003
Palliative Medicine
Publication year:
Symptom status:
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
Adults (18-65)
Children (0-18)
Seniors (65+)
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
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
BHI - Brief Hospice Inventory
CAMPAS-R - Cambridge Palliative Assessment Schedule
CMSAS - Condensed Memorial Symptom Assessment Scale
DS - Demoralization Scale
EFAT - Edmonton Functional Assessment Tool
Emanuel and Emanuel Medical Directive
EORTC QLQ-OES18 - European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire in patients with oesophageal cancer 18 items
EORTC QLQ-STO22 - European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire in patients with gastric cancer 22 item
ESAS - Edmonton Symptom Assessment System (versions: ESAS-PD - ESAS-Parkinson's Disease)
FACIT-Pal - Functional Assessment of Chronic Illness Therapy-Palliative Care
HQLI - Hospice Quality of Life Index
LCS - Life Closure Scale
LEQ - Life Evaluation Questionnaire
MQLS - McMaster Quality of Life Scale
MQOL - McGill Quality of Life Questionnaire [alias: McGill QoL] (also: MQOL-CSF - MQOL-Cardiff Short form)
MRDI - McCanse Readiness for Death Instrument
MSAS-GDI - Memorial Symptom Assessment Scale-Global Distress Index
MSAS - Memorial Symptom Assessment Scale (modifications exist for family caregivers and for hospice staff)
MVQOLI - Missoula-VITAS Quality of Life Index
NA-ACP - Needs Assessment for Advanced Cancer Patients
PAQ - Patient Autonomy Questionnaire
PDI - Patient Dignity Inventory
PNPC (Also: PNPC-sv) - Problems and needs in Palliative Care Questionnaire (Also: PNPC-sv - short version)
POS - Palliative care Outcome Scale   
QODD - Quality of Dying and Death Questionnaire
QUAL-E - Quality of Life at the End of Life
SNI - Spiritual Needs Inventory