Original Article
Quality of life: patients and doctors don't always agree: a meta-analysis

https://doi.org/10.1016/j.jclinepi.2003.11.013Get rights and content

Abstract

Objective

In addition to traditional clinical markers, quality-of-life assessment can be helpful to estimate the well-being of patients. Discrepancies in perception of well-being between physicians and patients may interfere with the effectiveness of treatment. A systematic review and meta-analysis were performed to explore the (dis-)agreement in quality-of-life assessments between patients and physicians.

Study Design and Setting

Data on the proportion agreement of paired observations were collected from Medline, Embase, Psychlit, and Social Abstracts.

Results

Of the 1,316 articles found, six met the selection criteria, four studied the proportion agreement between children and physicians, and all six the proportion agreement between parents and physicians. None examined the magnitude of over- or underestimation by physicians. The agreement was lower in the more subjective domains (0.54–0.77) in comparison to the more objective domains (0.79–0.94).

Conclusion

Quality-of-life assessment should be integrated in clinical practice. During long-term treatment the perception of the patients' well-being by physicians and patients themselves can easily diverge from each other, resulting in misunderstandings about the treatment and its usefulness in relation to perceived quality of life, and may even become the base for noncompliance.

Introduction

Quality of life (QOL) assessment is increasingly incorporated into clinical research. In randomized clinical trials it is becoming an important secondary outcome [1], [2], [3], [4], [5]. In clinical practice, QOL assessment can also be very helpful. It can be used to prioritize problems, facilitate communication, screen for potential problems, identify preferences, and monitor changes over time or response to treatment [6]. In clinical practice, physicians daily make medical decisions concerning the treatment of the patient. Predominantly traditional clinical markers, such as laboratory or clinical tests, are used to judge the success of an intervention and implicitly estimate the wellbeing of the patient. Such judgements do not necessarily reflect the patients' perception of QOL. Differences in perception of the well-being of patients may interfere with the effectiveness of treatment. For example, a survey on the prevalence of pain in 1,308 patients with metastatic cancer showed that a discrepancy between patients and physicians judgements of the severity of the pain was predictive of inadequate pain management [7].

In 1992, Sprangers et al. [8] investigated the role of proxy ratings in health-related (HR) QOL research. That systematic review included a broad spectrum of questionnaires; children were excluded. The authors concluded that the concordance between patients' and health care providers' view is far from optimal.

From the literature, it is still unclear in what respect patients' and physicians' assessments of QOL agree. To quantitatively answer this question we performed a meta-analysis focussed on the QOL assessed by patients and physicians. Both adult and pediatric patients were included. In children, patients are often too young to assess their own QOL, so a parent usually acts as a proxy. Although much literature exists on QOL, a clear definition is missing [9]. There is growing consensus that QOL of life is multidimensional in construct including physical, emotional, mental, social, and behavioral components [8], [10], [11], [12], which is the definition used in the present article.

Section snippets

Search strategy

We searched Medline (1966–July 2000), Embase (1988–March 2000), Psychlit (1966–March 2000), and Social Abstracts (1988–March 2000) using the keywords “health related QOL, QOL, health status, health assessment, health perception” each combined with “health care practitioner, doctor, health care giver, health care professional, health care provider, proxy.” In addition, we examined the reference lists of the retrieved articles for relevant papers.

Selection criteria

Studies were included if the assessment of QOL,

Results

The Medline search resulted in 8,776 articles, the Psychlit search in 379 articles, the Embase search in 1,355 articles, and the Social Abstracts search in 41 articles. Restricting the search to keywords appearing in the abstract and the title resulted in 598 articles in the Medline search, 135 articles in the Psychlit search, and 734 articles in the Embase search. The Social Abstracts search was not restricted, due to the small number found in the unrestricted search. Searching this output

Discussion

Our review demonstrates that despite the abundance of literature about QOL, very few studies did compare QOL assessments between patients and physicians in a reproducible way.

Only pooled proportions agreement between children–physicians and parents–physicians could be calculated because a uniform questionnaire was used in all the studies. As there are only a few questionnaires available to assess QOL in children, the odds were high that a uniform questionnaire was used. For adult patients there

Acknowledgements

We are grateful to Dr. W. Furlong, Dr. R. Felder-Puig, and Dr. C. Le Galès for providing the original data of their study, and to Dr. A. Billson for her endeavors to do so.

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