Elsevier

Social Science & Medicine

Volume 60, Issue 4, February 2005, Pages 833-843
Social Science & Medicine

The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory?

https://doi.org/10.1016/j.socscimed.2004.06.022Get rights and content

Abstract

This paper applies a theory-driven approach to explore why the use of patient-reported outcome (PRO) measures in clinical practice, in particular, health-related quality of life (HRQoL) instruments, has little or no apparent influence on clinical decision making. A theory-driven approach involves combining knowledge of whether and how an intervention works. It is argued that such an approach is currently lacking within the literature evaluating the effectiveness of feeding back HRQoL information to clinicians. The paper identifies a number of mechanisms that might give rise to the expected outcomes that are currently implicit within the design of the intervention and hypotheses specified within the trials evaluating the use of HRQoL measures in clinical practice. It then examines how far current clinical practice matches these mechanisms and in doing so, a number of possible explanations for the lack of impact of HRQoL on clinical decision making are reviewed. The influence of HRQoL information on clinical decision making depends on a large number of factors related to the design of the intervention, patients’ and clinicians’ desire to discuss HRQoL issues within the consultation and the legitimacy that clinicians give to HRQoL instruments. To date, knowledge of how the feedback of HRQoL information to clinicians might improve doctor-patient communication or clinical decision making has yet to sufficiently inform an assessment of whether these aspects of patient care are improved. The paper concludes by specifying how the feedback of HRQoL information to clinicians might be modified to maximise its impact on clinical decision making.

Introduction

The purpose of this paper is to question why the use of patient-reported outcome measures (PROs) in clinical practice, in particular, those measuring health-related quality of life (HRQoL), has little influence on clinical decision making. To do this, the paper applies a theory-driven approach (Weiss, 1995; Connell & Kubisch, 1995; Pawson, 2002) to argue that systematic reviews and randomised controlled trials assessing the efficacy of this intervention have focused almost exclusively on determining whether the intervention works without adequate consideration of how the intervention might give rise to the expected outcomes. Consequently, this literature provides little insight into the reasons why the use of HRQoL measures in clinical practice does not impact upon patient care and also calls into question the appropriateness of the outcome criteria used to judge the intervention's effectiveness. To address this, the paper identifies a number of mechanisms that might give rise to the expected outcomes that are currently implicit within the design of the intervention and hypotheses specified within the trials evaluating the use of HRQoL measures in clinical practice. It then examines how far current clinical practice matches these mechanisms and in doing so, a number of possible explanations for the lack of impact of HRQoL on clinical decision making are reviewed. The paper concludes by specifying how the intervention might be modified in order to maximise its potential impact on clinical decision making.

Section snippets

Evidence for the impact of HRQoL measures on clinical decision making

PRO measures include standardised measures of health status, disability, handicap and HRQoL as well as instruments assessing more specific dimensions of patient experience such as depression and anxiety (Bowling, 1995). The use of such instruments in clinical practice, in particular, those measuring HRQoL, has been proposed as a means of facilitating communication, uncovering patients’ problems and monitoring response to treatment (Higginson & Carr, 2001). However, recent systematic reviews

A theory-driven approach to evaluation

To query the legitimacy of the reviews’ conclusions and examine why the use of HRQoL measures in clinical practice does not influence clinical decision making requires an understanding of what the intervention is and how it is expected to work. Numerous authors have recognised the need for a theory-driven approach to the evaluation of complex interventions. For example, Weiss (1995) and Connell and Kubisch (1995) proposed the ‘theory of change’ approach that involves specifying not only the

Application of the theory-driven approach to the evidence base for the use of HRQoL measures in clinical practice

A starting point in applying a theory-driven approach to the feedback of HRQoL information to clinicians is to review the hypotheses tested by the randomised controlled trials that have evaluated the effectiveness of this intervention. The aim here is to identify the extent to which these hypotheses provide a series of mechanisms to link the intervention with its expected outcomes. The model in Fig. 1, below, summarises these hypotheses (hypotheses used in the trials have been italicised).

  • 1.

    The

Developing the theory-driven approach further

An analysis of the design of the intervention can reveal the implicit assumptions regarding how the intervention gives rise to the intended outcomes. In all the randomised controlled trials, the intervention was designed such that patients completed a questionnaire measuring some aspect of their HRQoL or health status and this was then fed back to their clinician. In the majority of trials the information was fed back to medical practitioners on a single occasion. Clinicians were given either

Defining and measuring HRQoL and the patient’s perspective

The concept of HRQoL has been criticised for its lack of a theoretical basis and agreement regarding its definition (Hunt, 1997). This plurality has given rise to a wide range of instruments claiming to measure HRQoL that cover different dimensions of the construct, with users of such instruments rarely defining what they mean by the term (Gill & Feinstein, 1994). It has been strongly argued that any conceptualisation of HRQoL needs to prioritise the views of the individual and recognise the

Summary: the intervention

In summary, the ways in which the intervention has been designed within the trials may not have served to maximise the potential value of the feedback on HRQoL information. The instrument used needs to prioritise the views of the individual in order to adequately reflect their HRQoL. Clinicians other than medical practitioners also care for patients and may find HRQoL information more useful. Many of the decisions that clinicians make about patient management (and that HRQoL information aims to

Mechanisms implicit within the hypotheses

The mechanisms implicit within the trial hypotheses specify the conditions that must be met in order to achieve the outcomes B-F in the model (Fig. 1). These are that patients want to talk about their HRQoL clinicians, clinicians feel it is appropriate to discuss HRQoL issues with their patients and see the information from such instruments as sufficiently clinical important to warrant a change to the patient's treatment. The extent to which these conditions are, or can, be met also provides a

Implicit mechanisms: summary

These studies suggest that current clinical practice is some distance from the ideal set out in the mechanisms implicit within the randomised controlled trials evaluating the efficacy of this intervention. Patients themselves vary in their wishes to discuss HRQoL issues and there is often a mismatch between their desires and the clinicians’ willingness or ability to discuss specific HRQoL domains. Although clinicians report giving a high priority to HRQoL in decision making, in reality, HRQoL

Summary and conclusions

This paper has applied a theory-driven approach to the feedback of health status measures to clinicians to bring together evidence of both whether and how this intervention is effective, and has reviewed a number of explanations for the lack of impact of HRQoL measures on clinical decision making. Two main observations can be made.

Firstly, unless the mechanisms through which the expected outcomes will be achieved are explicitly specified, the appropriateness of the outcome criteria used to

Acknowledgements

The authors would like Elaine McColl, Jane Blazeby, Alison Brettle and Andrew Brown for their comments on earlier drafts of this paper. JG is funded by the North West Office of the Department of Health on a post-doctoral research training fellowship.

References (59)

  • D. Roter

    The enduring and evolving nature of the patient–physician relationship [Review] [51 refs]

    Patient Education and Counseling

    (2000)
  • K.W. Wyrwich et al.

    Clinically important differences in health-related quality of life for patients with asthmaAn expert consensus panel report [comment] [Review] [29 refs]

    Annals of Allergy, Asthma, and Immunology

    (2003)
  • P. Atkinson

    Medical talk and medical work

    (1995)
  • Baars, R., van der Pal, S., Koopman, H., & Wit, J.M. (in press). Clinician's perspective on quality of life assessment...
  • N. Bellamy et al.

    Quantitative rheumatologyA survey of outcome measurement procedures in routine rheumatology outpatient practice in Canada

    Journal of Rheumatology

    (1998)
  • A. Bezjak et al.

    Oncologists’ use of quality of life informationResults of a survey of Easter Cooperative Oncology Group physicians

    Quality of Life Research

    (2001)
  • A. Bezjak et al.

    A preliminary survey of oncologists’ perceptions of quality of life information

    Psycho-Oncology

    (1997)
  • A. Bowling

    Measuring disease

    (1995)
  • J.P. Connell et al.

    Applying a theory of change approach to the evaluation of comprehensive community initiativesprogress, prospects and problems

  • S.B. Detmar et al.

    How are you feeling? Who wants to know? Patients’ and oncologists’ preferences for discussing health related quality of life issues

    Journal of Clinical Oncology

    (2000)
  • S.B. Detmar et al.

    Health related quality of life assessments and patient–physician communication

    JAMA

    (2002)
  • S.B. Detmar et al.

    Role of health-related quality of life in palliative chemotherapy treatment decisions

    Journal of Clinical Oncology

    (2002)
  • S.B. Detmar et al.

    The patient–physician relationship. Patient–physician communication during outpatient palliative treatment visitsAn observational study

    JAMA

    (2001)
  • L.S. Elting et al.

    Influence of data display formats on physician investigators’ decisions to stop clinical trials

    British Medical Journal

    (1999)
  • M. Espallargues et al.

    Provision of feedback on perceived health status to health care professionalsA systematic review of its impact [see comments] [Review] [53 refs]

    Medical Care

    (2000)
  • S.M. Gilbody et al.

    Routinely administered questionnaires for depression and anxietySystematic review [comment] [Review] [24 refs]

    BMJ

    (2001)
  • S.M. Gilbody et al.

    Routine administration of health related quality of life (HRQoL) and needs assessment instruments to improve psychological outcome—a systematic review [comment] [Review] [72 refs]

    Psychological Medicine

    (2002)
  • S.M. Gilbody et al.

    Psychiatrists in the UK do not use outcomes measures

    National survey. British Journal of Psychiatry

    (2002)
  • S.M. Gilbody et al.

    Improving the recognition and management of depression in primary care

    Effective Health Care

    (2002)
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