Education and debate

Measuring quality of life

Using quality of life measures in the clinical setting
Irene J Higginson, Alison J Carr

In modern medicine the traditional way of assessing This is the

change in patients has been to focus on laboratory or
clinical tests. At its most simple this involves measuring
pulse, blood pressure, and temperature, and carrying
out physical examinations. At more complex levels it
may include haematological analysis, computed tomo-
graphy, radiography, organ function tests, genetic analy-
sis, and other investigations. While these give important
information about the disease, especially about chronic
and progressive diseases, it is impossible to separate dis-
ease from an individual’s personal and social context. No
illness exists in a vacuum.
One way of capturing the personal and social con-
text of patients is to use quality of life measures.1 These
are accepted as outcome measures in clinical research
but are rarely used in routine clinical practice, despite
the fact that Florence Nightingale was one of the first
clinicians to insist on measuring the outcome of
routine care to evaluate treatment.2 This article reviews
the challenges of using quality of life measures in clini-
cal practice including selecting appropriate measures,
analysing data, providing feedback, interpreting results,
and incorporating these measures into clinical
decision making. Practical ways of resolving the tension
between the need for approaches suitable in the clini-
cal encounter and the highly individualised nature of
quality of life are also examined.
Using quality of life measures
in clinical practice
Quality of life measures have eight potential uses in
aiding routine clinical practice. They can be used to
prioritise problems, facilitate communication, screen
for potential problems, identify preferences, monitor
changes or response to treatment, and train new staff
(box). They can also be used in clinical audit and in
clinical governance. The first five of these are of imme-
diate value in the clinical encounter, while the last three
contribute to training, reviewing care, and improving
care in the future. (A summary of how quality of life
measures can be used to improve the quality of care
appears on the BMJ’s website.)
Pitfalls
The underlying reason for using quality of life measures
in clinical practice is to ensure that treatment plans and
evaluations focus on the patient rather than the disease.
Quality of life is not the only way to measure patient
centred outcomes; measures of disability, social interac-
tion and support, and psychological wellbeing may be
appropriate. Quality of life measures are not a substitute
for measuring outcomes associated with disease but are
an adjunct to them: for example, rheumatologists do not
treat rheumatoid arthritis with antirheumatic drugs sim-
ply on the basis of quality of life scores. Similarly, broad,
multidimensional quality of life measures may be less
effective, accurate, and responsive than measures of spe-
Summary points second in a
series of five
articles
Using quality of life measures in clinical practice
ensures that treatment and evaluations focus on
Department of
the patient rather than the disease
Palliative Care and
Policy, King’s
The measures are potentially useful in both the College London
clinical encounter and in quality improvement and
St Christopher’s
Hospice, New
They are not a substitute for measures of disease Medical School,
outcomes and may not always be the most London SE5 9PJ
appropriate patient centred outcome to assess Irene J Higginson
professor
Measures developed for research often cannot Academic
Rheumatology,
easily be used in clinical practice University of
Nottingham,
Measures that form an integral part of treatment Nottingham City
Hospital,
planning and evaluation are more likely to Nottingham
influence clinical decision making than those that NG3 5DE
are used only to monitor disease or treatment Alison J Carr
ARC senior lecturer
in epidemiology
Correspondence to:
cific patient outcomes (for example, anxiety and depres- I J Higginson
sion) in situations where treatment is aimed at achieving irene.higginson@
kcl.ac.uk
a particular outcome. Quality of life is a highly individual
concept. Mount and Scott likened the assessment of it to Series editors: A J
Carr, I J Higginson,
assessing the beauty of a rose6: no matter how many P G Robinson
measurements are made (for example of colour, smell,
and height), the full beauty of the rose is never captured. BMJ 2001;322:1297–300
Quality of life measures will never capture all aspects of
life that are important to an individual, although systems
in which patients specify at least some of the qualities are
likely to come closest. The individual nature and the
shortcomings of many existing measures are discussed
further in the next paper in this series.7
The routine use of quality of life measures is no
substitute for training staff. There is the danger that
staff may see the use of the assessment as an alternative
to communicating with patients rather than as an aid
to care. Training in the use of quality of life measures is
something that is generally lacking in undergraduate
and postgraduate education. In clinical governance
and audit caution is needed in interpreting the results
of these assessments and other outcome measures for
a different case mix of patients.
Ethical considerations
The breadth of quality of life as a concept means that
problems might be identified that are outside the usual Additional
remit of medical care.8 This raises a number of ethical information about
using measures for
concerns. Firstly, the act of measuring quality of life in clinical
a clinical setting may generate the expectation that the improvement and
clinician will be able to influence it: otherwise, what properties needed
for use in clinical
would be the purpose of measuring it? In situations practice can be
where this is not possible, patients may be seen to be found on the BMJ’s
harmed by the process of measurement. Secondly, website

BMJ VOLUME 322 26 MAY 2001 bmj.com 1297

Education and debate

measure, its responsiveness to clinical change, and its

Uses for quality of life measures in clinical practice
Identifying and prioritising problems
Because the measure records information on a range of problems the
patient and the doctor or nurse can identify which problems are most
important. They can thus agree priorities. This is particularly useful when
patients have multiple problems.3 Additionally, these measures can be used
to capture information that superficially seems to have no clinical relevance
but might explain disease severity or coping problems4
Facilitating communication
Because the measure presents clear information on a range of problems it
can help patients to communicate their problems. If correctly applied it may
speed the clinical encounter and help staff to focus on the patient’s main
concerns.
Screening for hidden problems
Some patients’ problems can be overlooked unless specifically inquired
about, especially psychological and social problems.5 For example, a
measure that asks, “Would you describe your mood as depressed most of
the time,” is a sensitive and specific screening tool for depression
Facilitating shared clinical decision making
Used in this way assessments help identify the patient’s preferred outcome
or treatment goals. If these are not known, then the treatment may not meet
the patient’s expectations, and this may affect adherence to treatment and
the patient’s satisfaction with care
Monitoring changes or responses to treatment
Change is usually monitored through laboratory or clinical tests rather than
the patient’s perception of change. Inability to bring about improvements
that are seen as relevant to the patient may affect adherence to treatment
some pressure groups, such as the movement for inde-
pendent living in the United States, have opposed the
clinical measurement of quality of life on the grounds
that it represents the “overmedicalisation” of life and
clinical interference in aspects of patients’ lives that
should not be the concern of the clinician. However,
data from quality of life measures could be used to
lobby for sufficient resources or to inform health and
social policy. Thirdly, chronic disease affects and is
affected by broader aspects of people’s lives, such as
their relationships and social support, and information
on these aspects can influence treatment decisions and
assessments of healthcare need.
interpretability (box). (A more detailed version of this
box appears on the BMJ’s website.)
Transferring measures from research to practice
Barriers to the routine clinical use of outcome
measures, such as quality of life, include concerns
about cost, feasibility, and clinical relevance.9 For a
measure to have clinical usefulness it must not only be
valid, appropriate, reliable, responsive, and able to be
interpreted, but it must also be simple, quick to
complete, easy to score, and provide useful clinical
data.10 Most existing measures were developed for use
in clinical research11 where time and budgetary
constraints are different from those in clinical practice.
Some quality of life measures require trained staff to
administer them and are time consuming, taking 20-30
minutes to complete. Similarly, since the purpose of
measuring the quality of life in clinical trials is to com-
pare groups of patients (usually over relatively short
periods) assessments of existing measures have
focused on their performance in these situations. Such
situations are different from clinical practice where the
purpose of measurement is to assess change in
individual patients, in some instances over many
years.12 Furthermore, measures that quantify the
broader context of a patient’s life are likely to be influ-
enced by events occurring throughout the patient’s life,
and it is not yet clear how changes in these measures
should be interpreted over long periods. This is the
problem of “response shift,” discussed in the first paper
in this series and which will be revisited in a later paper
about who should measure quality of life.13 14
A small but growing number of instruments used to
measure quality of life specifically in clinical practice are
available. The disease repercussion profile15 assesses a
patient’s perception of handicap in rheumatoid arthritis,
osteoarthritis, and back pain. Other examples include
the support team assessment schedule,16 the Edmonton
symptom assessment scale,17 and the palliative outcome
scale,18 all of which were developed specifically for pallia-
tive care, and the measure yourself medical outcome
profile (MYMOP),19 designed for use in primary care.

Measuring quality of life

Properties of the measure
In addition to the properties needed when using a
measure in research, such as validity and reliability, in
clinical practice a wider range of properties are required
to ensure that a measure can be used routinely. These
include the appropriateness and acceptability of the

Properties needed by measures used in clinical practice

Validity: does the instrument measure what it is intended to measure, such
as quality of life?
Appropriateness and acceptability: is the measure suitable for its intended
use? This is crucial in clinical practice
Reliability: does the measure produce the same results when repeated in
the same population?
Responsiveness to change: does the measure detect clinically meaningful
changes? This is sometimes called sensitivity
IMAGES

Interpretability: can results from the measure be interpreted clinically and

are they relevant?
Quality of life measures will never capture all aspects of life that are
important to an individual

1298 BMJ VOLUME 322 26 MAY 2001 bmj.com


Many of these instruments are known to be reliable and
valid but trials are required to evaluate their routine use
in clinical practice.
Interpreting results
Scores from quality of life measures in studies are often
presented as means. While this is useful in testing one
treatment against another in groups of patients, it is of
less value in clinical practice. At what point is a
problem considered severe? Is it when the score is
above the mean? Or when scores are in the top
quarter? The decision is clinical. Some screening scales
have cut-off points for clinical intervention (for
example, depression scales), but for others what is
more important is whether the problem is rated as
severe.18 Reducing the number of patients with severe
pain was considered to be the clinically important
aspect of the support team assessment scale.20
Introducing and reviewing measures
Introducing quality of life measures into clinical
practice often means that staff need to change their
practice. Change can be threatening, especially if staff
believe that they may be judged adversely. The organi-
sation’s culture becomes important.21 Staff will need
training in using and interpreting the measure, as they
would for any new assessment tool. To be of most value
quality of life measures should be incorporated into
the clinical record and the results discussed at clinical
review meetings.22 Suggested steps in choosing a qual-
ity of life measure and introducing it into clinical prac-
tice are shown in the boxes.
Do quality of life measures improve care?
The individual patient
The potential benefit to patients of using these measures
in clinical practice is that their problems are identified
and dealt with and that treatment decisions are based on
their priorities and preferences. Evidence for these ben-
efits is lacking because these measures are rarely used in
clinical practice. In rheumatology, where quality of life
has been an important outcome in clinical trials for 15
to 20 years, surveys in the United Kingdom suggest that
little use is made of these measures in clinical practice.23
Moreover, there is some suggestion that even when
quality of life measures are used they do not influence
clinical decision making. Analyses of clinical judgment
have highlighted discrepancies between the ways some
clinicians think they make decisions and the way they
actually do.24 The effect of information from these meas-
ures on clinical decision making seems small,25 but these
data were collected before the introduction of high pro-
file quality of life measures (such as the medical
outcomes survey short form 36 (SF-36)).
One way of ensuring that quality of life assessments
influence clinical decision making is to use them as a
basis for making choices about treatment. This can be
effected by using measures to identify individual prob-
lems and priorities for treatment and then negotiating
treatment goals based on them. An evaluation of the
role of these measures in setting clinical goals in
patients with rheumatoid arthritis has just been
completed (RA Hughes et al, personal communication,
2000).
BMJ VOLUME 322 26 MAY 2001 bmj.com
Education and debate
Questions to be asked when assessing a quality of life measure for
use in clinical practice
• Are the domains covered relevant?
• In what population and setting was it developed and tested, and are these
similar to those situations in which it is planned to be used?
• Is the measure valid, reliable, responsive, and appropriate?
• What were the assumptions of the assessors when determining validity?
• Are there floor and ceiling effects—that is, does the measure fail to
identify deterioration in patients who already have a poor quality of life
(floor effect) or improvement in patients who already have a good quality of
life (ceiling effect)?
• Will it measure differences between patients or over time and at what
power?
• Who completes the measure: patients, their family, or a professional?
What effect will this have—that is, will they complete it?
• How long does the measure take to complete?
• Do staff and patients find it easy to use?
• Who will need to be trained and informed about the measure?
The clinical service
There is a lack of evidence showing that findings from
audit or similar initiatives have resulted in a change in
practice. Realising that a problem exists is not enough
to indicate what exactly needs to be changed in a clini-
cal service.26 Evaluation of audits in one health region
in the United Kingdom identified changes in clinical
services in the development and implementation of
new standards of care; improvements in documenta-
tion; and specific changes in clinical practice, such as
prescribing, managing accidents, and seeking infor-
mation by health professionals.27 However, there was
no analysis of whether patients’ outcomes changed,
and further work is needed to assess this. Using quality
of life measures, such as quality adjusted life years
(QALYs), to determine the relative value of different
services or interventions is difficult because of the “dis-
ability paradox.” People with severe or even life threat-
ening disease may not rate their quality of life as
significantly poorer than people with mild disease or
people who are healthy. This makes it difficult to
Introducing a quality of life measure into clinical practice
• Review who is using which measures internally and externally
• Choose a measure
• Decide whether other outcomes also need to be monitored
• Involve staff and patients
• Adapt the measure for local use and requirements
• Identify a leader of the project
• Assign responsibilities (decide who will be doing what)
• Agree a timetable
• Test when and where the measure will be completed
• Prepare and test paperwork
• Plan and begin training in both the use of the measure and associated
clinical skills (for example, this can be part of general staff training in
communication and assessment)
• Agree start date and review period
• Begin using the measure
• Review its use in the first week and month and then at regular intervals
• Review individual patients’ results and group results to improve care
• Modify measure as patients and staff feel appropriate to improve the use
of the measure or make other changes
1299
Education and debate
directly compare groups of patients with different dis-
eases in order to allocate resources. The implications of
the paradox in measuring quality of life are discussed
in more detail in several papers in this series.
Implications for the future
Technology
Many of the practical problems associated with
measuring quality of life in clinical practice may be
overcome by the use of new technologies. Computer-
ised approaches to data storage and retrieval will sim-
plify the collection, storage, and monitoring of data.
The ability to administer measures over the internet,
using touch screen or palm top computers, will
overcome some of the problems of administering and
scoring them. Data will be able to be automatically
downloaded to the records of individual patients and
then reviewed in the context of their treatment and
clinical outcomes.
Individualised measures
The increasing interest in developing individualised
measures reflects the perception that quality of life is
unique to individuals and cannot be adequately assessed
using standardised measures that ask every patient the
same questions and require responses to be selected
from a predetermined set. The extent to which existing
measures capture the quality of life of individual patients
is discussed in the next paper in this series.7
Individualised measures such as the schedule for the
evaluation of individualised quality of life (SEIQoL)28
and the patient generated index29 ask the same questions
of all patients but allow them to specify their own
responses.
The use of individualised measures in research has
been limited by difficulties in administering and scoring
them, but in clinical practice they have immediate
relevance. They are designed to detect individuals’ prob-
lems and as such are more readily interpreted in ways
that are clinically meaningful. They also provide a basis
for sharing clinical decision making between patients
and clinicians, identifying patients’ priorities for treat-
ment, and facilitating the setting of realistic treatment
goals. There may be opportunities to combine these
approaches with short, standardised measures that
include screening questions. Further evaluation of the
performance of individualised measures in clinical prac-
tice is required. This should be developed in parallel
with statistical methods that allow data from individual-
ised measures to be analysed.
Research
A number of questions about the clinical utility of
quality of life measures remain unanswered. Firstly, are
existing measures appropriate and adequate for
clinical practice or are new measures required?
Answering this will involve evaluating existing meas-
ures in clinical settings with appropriate psychometric
assessment of their performance in individual patients
over time. This raises the second question, which
relates to the definition and assessment of changes in
The articles in this
the quality of life of individual patients: how do existing
series are from measures take account of changes in expectations,
Quality of Life, which adaptation, and normalisation when assessing
will be published by
BMJ Books next changes? These issues were highlighted in the first
year paper in this series.13 The third question concerns the
1300
clinical interpretation of these measures: what consti-
tutes an important change in quality of life (and to
whom is the change important)? Answering these
questions will enable existing measures to be calibrated
with respect to thresholds for intervention. They will
thus communicate better information to patients and
their families about the likely benefits of treatment.
We thank our colleagues in the Interdisciplinary Research
Group in Palliative and Person Centred Care at King’s College
London, in particular Peter Robinson, Barry Gibson, Stanley
Gelbier, Robert Dunlop, Julia Addington-Hall, Lalit Kalra, and
Alan Turner-Smith, who participated in discussions and
commented on an earlier draft of this work.
Funding: AJC’s post is funded by the Arthritis Research
Campaign.
Competing interests: None declared.
1 Bowling A. Measuring disease. A review of quality of life measurement scales.
Milton Keynes: Open University, 1995.
2 Rosser RM. A history of the development of health indices. In: Smith GT,
ed. Measuring the social benefits of medicine. London: Office of Health Eco-
nomics, 1985.
3 Higginson I. Clinical teams, general practice, audit and outcomes. In: Dela-
mothe T, ed. Outcomes into clinical practice. London: BMJ Books, 1994:28-39.
4 Stowers K, Hughes RA, Carr AJ. Information exchange between patients
and health professionals: consultation styles of rheumatologists and
nurse practitioners. Arthritis Rheum 1999;42(suppl):388S.
5 Maguire P, Walsh S, Jeacock J, Kingston R. Physical and psychological needs
of patients dying from colo-rectal cancer. Palliat Med 1999;13:45-50.
6 Mount BM, Scott JF. Whither hospice evaluation? J Chronic Dis
1983;36:731-6.
7 Carr AJ, Higginson IJ. Are quality of life measures patient centred? BMJ
2001 (in press).
8 Feinstein AR. Benefits and obstacles for development of health status
assessment measures in clinical settings. Med Care 1992;30(suppl):50S.
9 Deyo RA, Carter WB. Strategies for improving and expanding the appli-
cation of health status measures in clinical settings: a researcher-
developer viewpoint. Med Care 1992;30(suppl):176S.
10 Thornicroft G, Slade M. Are routine outcome measures feasible in men-
tal health? Qual Healthcare 2000;9:84
11 Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et
al. The European Organisation for Research and Treatment of Cancer
QLQ-C30: a quality of life instrument for use in international clinical
trials in oncology. J Natl Cancer Inst 1993;85:365-75.
12 Fitzpatrick R, Davey C, Buxton MJ, Jones DR. Evaluating patient-based
outcome measures for use in clinical trials. Health Technol Assess
1998;2:18.
13 Carr AJ, Gibson BA, Robinson PG. Is quality of life determined by expec-
tations or experience? BMJ 2001;322:1240-3.
14 Addington-Hall J, Kalra L. Who should measure quality of life? BMJ (in
press).
15 Carr AJ. A patient-centred approach to evaluation and treatment in
rheumatoid arthritis: the development of a clinical tool to measure
patient-perceived handicap. Br J Rheumatol 1996;35:921-32.
16 Higginson I, McCarthy M. Validity of a measure of palliative
care—comparison with a quality of life index. Palliat Med 1994;8:282-90.
17 Bruera E, Kuehn N, Miller M, Selmser P, MacMillan K. The Edmonton
symptom assessment system (ESAS): a simple method for the assessment
of palliative care patients. J Palliat Care 1991;7:6-9.
18 Hearn J, Higginson IJ. Validation of a core outcome measure for
palliative care—the palliative care outcome scale (The POS). Qual Health
Care; 1999;8:219-27.
19 Patterson C. Measuring outcomes in primary care: a patient-centred out-
come measure, MYMOP, compared with the SF-36 health survey. BMJ
1996;312:1016-20.
20 Higginson I, Wade A, McCarthy M. Effectiveness of two palliative care
support teams. J Public Health Med 1992;14:50-6.
21 Davies HTO, Nutley SM, Mannion R. Organisational culture and quality
of health care. Qual Health Care 2000;9:111-9.
22 Higginson IJ, Jefferys P, Hodgson C. Outcome measures for routine use
in dementia services: some practical considerations. Qual Health Care
1997;6:120-4.
23 Carr AJ, Thompson PW, Young A. Do health status measures have a role
in rheumatology? A survey of rheumatologists’ use of and attitudes
towards health status measures in the UK. Arthritis Rheum 1996;39:261S.
24 Kirwan JR, Chaput de Saintonge DM, Joyce CRB, Currey HLF. Clinical
judgement in rheumatoid arthritis. II. Judging ‘current disease activity’ in
rheumatoid arthritis. Ann Rheum Dis 1983;42:648-51.
25 Kazis LE, Callahan LF, Meenan RF, Pincus T. Health status reports in the
care of patients with rheumatoid arthritis. J Clin Epidemiol 1990;43:1243-
53.
26 Crombie IK, Davies HTO. Missing link in the audit cycle. Qual Health Care
1993;2:47-8.
27 Higginson IJ, Hearn J, Webb D. Audit in palliative care: does practice
change? Eur J Cancer Care 1996;5:233-6.
28 O’Boyle CA, McGee H, Hickey A, O’Malley K, Joyce CRB. Individual
quality of life in patients undergoing hip replacement. Lancet
1992;339:1088-91.
29 Ruta DA, Garatt AM. A new approach to the measurement of quality of
life. The patient generated index. Med Care 1994;32:1109-26.
BMJ VOLUME 322 26 MAY 2001 bmj.com