Who should measure quality of life?
BMJPublished 9 June 2001Open access
Julia Addington‐Hall, Lalit Kalra
Citations339
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TL;DR
This is the fourth in a series of five articles about the rapid development of quality of life measures in health care and the growing recognition of the importance of understanding the impact of healthcare interventions on patients' lives rather than just on their bodies.
Keywords
Social SciencesMedicineEconomics, Econometrics and Finance
Social Science & MedicineIntegrating response shift into health-related quality of life research: a theoretical model
2,140 Citations1999Mirjam A. G. Sprangers, Carolyn E. Schwartz
A theoretical model is proposed to clarify and predict changes in QOL as a result of the interaction of a catalyst, referring to changes in the respondent's health status, and a dynamic feedback loop aimed at maintaining or improving the perception of QOL.
Journal of Clinical EpidemiologyThe role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review
1,082 Citations1992Mirjam A. G. Sprangers, Neil K. Aaronson
There is need for more methodologically sound studies that incorporate head-to-head comparisons of health care providers and significant others as proxy raters and employ well-validated quality-of-life measures and employ a longitudinal design in order to examine the effect of changes in patients' health status over time on the ability of proxies to provide valid quality- of-life assessments.
BMJUsing quality of life measures in the clinical setting
978 Citations2001Irene J Higginson, Alison J Carr
BMJIs quality of life determined by expectations or experience?
819 Citations2001Alison Carr, Barry Gibson +1 more
It is argued that perceptions of health and its meaning vary between individuals and within an individual over time and a model of the relation between expectations and experience is proposed to illustrate problems in measuring quality of life.
BMJDoctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis
543 Citations1997Peter M. Rothwell, Zoe C. McDowell +2 more
Journal of Pain and Symptom ManagementThe Concept of Quality of Life of Dying Persons in the Context of Health Care
361 Citations1999Anita L. Stewart, Joan M. Teno +2 more
The goal is to facilitate development of a comprehensive set of measures to describe the quality of life of dying persons and evaluate the care they receive, to be used to improve end-of-life care.
Medical CareUsing Proxies to Evaluate Quality of Life
308 Citations1989Arnold M. Epstein, Judith A. Hall +3 more
The results suggest that use of proxies intermingled with subjects to measure health status through interview may lead to biased results.
Palliative MedicineSurvival prediction in terminal cancer patients: a systematic review of the medical literature
297 Citations2000Antonio Viganò, Marlene Dorgan +3 more
Performance status and the presence of cognitive failure, weight loss, dysphagia, anorexia and dyspnoea appear to be independent survival predictors in this population of terminally ill cancer patients.
Medical CareThe Validity of Proxy-Generated Scores as Measures of Patient Health Status
258 Citations1991Margaret Rothman, Susan C. Hedrick +3 more
Findings showed that patient-generated and proxy-generated physical scores were highly correlated, although proxies rated patients as slightly more impaired than the patient's rated themselves, and the correlation between psychosocial scores was not high enough to consider proxy responses as valid substitutes for patient responses.
Journal of Clinical OncologyRandomized comparison of four tools measuring overall quality of life in patients with advanced cancer.
248 Citations1998Jeff A. Sloan, Charles L. Loprinzi +7 more
Patients can effectively complete QOL tools in a cooperative group setting with proper education of health care providers and patients, and a simple single-item tool (UNISCALE) appears to be appropriate to obtain a measure of overall QOL.
Quality of Life ResearchRandomized trials with quality of life endpoints: Are doctors' ratings of patients' physical symptoms interchangeable with patients' self-ratings?
240 Citations1997Richard Stephens, Penelope Hopwood +2 more
In randomized trials of palliative treatment involving over 700 patients, patients completed Rotterdam Symptom Checklists and doctors reported on eleven of the same physical symptoms at each assessment, using the same 4-point severity scale, the two methods resulted in similar between-treatment conclusions.
Palliative MedicineA comparison of patient and proxy symptom assessments in advanced cancer patients
235 Citations1999Cheryl Nekolaichuk, Éduardo Bruera +4 more
Proxy assessments of symptom intensity, particularly by physicians, were significantly lower than patient assessments for three of the nine symptoms, and the accuracy of assessments amongst those rating the symptoms did not improve over time.
Journal of Clinical OncologyQuality-of-Life Measurement in Advanced Cancer: Assessing the Individual
212 Citations1999Dympna Waldron, Ciaran A. O’Boyle +3 more
Patients with advanced incurable cancer were very good judges of their QoL, and many patients rated theirQoL as good, with very high levels of consistency and validity.
Journal of Clinical EpidemiologyComparison of Patient and Proxy EORTC QLQ-C30 Ratings in Assessing the Quality of Life of Cancer Patients
187 Citations1998K.C.A. Sneeuw, Neil K. Aaronson +4 more
The present findings lend support to the viability of employing significant others as proxy respondents of cancer patients' quality of life where this is necessary.
British Journal of CancerEvaluating the quality of life of cancer patients: assessments by patients, significant others, physicians and nurses
182 Citations1999K.C.A. Sneeuw, Neil K. Aaronson +4 more
Cancer PracticeQuality of Life in Cancer Patients
162 Citations1998Susan C. McMillan, Michael A. Weitzner
Of note from this study, the significant difference between groups in functional well-being and minimal difference in social/spiritualWell-being suggest that patients are able to appraise their functional abilities realistically and still maintain their social network and spiritual beliefs during a terminal illness.
Journal of Clinical OncologyValue of caregiver ratings in evaluating the quality of life of patients with cancer.
153 Citations1997K C Sneeuw, Neil K. Aaronson +4 more
For studies among patient populations at risk of deteriorating self-report capabilities, physicians and informal caregivers can be useful as alternative or complementary sources of information on cancer patients' QL.
CancerPatients with cancer and their spouse caregivers. Perceptions of the illness experience
140 Citations1992Elizabeth C. Clipp, Linda K. George
It was concluded that caregivers can serve as proxies for patients with cancer in research and clinical settings when objective data are sought, and that patients viewed marital quality more negatively than did caregivers.
Journal of Internal MedicineQuality of life after cerebrovascular stroke: a systematic study of patients’ preferences for different functional outcomes
88 Citations1999Stein Hallan, Arne Åsberg +2 more
Quality of life after cerebrovascular stroke: a systematic study of patients’ preferences for different functional outcomes.
Journal of Clinical EpidemiologyProxy Use of the Canadian SF-36 in Rating Health Status of the Disabled Elderly
71 Citations1998Uriel Pierre, Sharon Wood-Dauphinée +3 more
Estimation of agreement between elderly subjects and their proxies on perceptions of health status, when patients were inpat patients in a rehabilitation setting or outpatients in a day hospital, and if there were overestimations or underestimations by proxies found a trend toward underestimating by proxies.
AnaesthesiaReasons for withdrawing treatment in patients receiving intensive care
63 Citations1998Alex Manara, Joyce Pittman +1 more
The frequency with which treatment was withdrawn in intensive care patients and the primary reason for reaching this decision was imminent death in 45% of patients, qualitative considerations in 50% and lethal conditions in 5%.
Palliative MedicineDomiciliary care: a comparison of the views of terminally ill patients and their family caregivers
51 Citations1993Juliet Spiller, David Alexander
This study compares terminally ill patients and their family caregivers in terms of the physical and emotional status of the patients, the adequacy of the support provided for the patients and where the patients would be most appropriately placed during the last stage of their lives.
Transplant InternationalDo retrospective and prospective quality of life assessments differ for pancreas-kidney transplant recipients?
41 Citations1998Eddy Adang, G. Kootstra +4 more
Age and AgeingThe Valuation of States of III-health: the Impact of Age and Disability
16 Citations1991Shah Ebrahim, Sarajane Brittis +1 more
The development of explicit valuations of survival should take into account differences caused by disability, and examine other dimensions of illness experience.
Cancer NursingOncology clients?? affective states and their nurses?? expectations of clients?? affective states
12 Citations1985Sally A. Husted, Jewett G. Johnson
The purpose of this study was to examine the differences between oncology clients' self-reported and nurses' perceptual reports of the clients' affective states and study this difference as it relates to client denial, demographic factors of both the nurse and the client, and perceptual factors of the nurse.