Measuring quality of life
Using quality of life measures in the clinical tting Irene J Higginson,Alison J Carr
In modern medicine the traditional way of asssing
change in patients has been to focus on laboratory or
clinical tests.At its most simple this involves measuring
pul,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 the give important
information about the dia,especially about chronic
and progressive dias,it is impossible to parate dis-
ea 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 u quality of life measures.1The
are accepted as outcome measures in clinical rearch
but are rarely ud 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.2This article reviews
the challenges of using quality of life measures in clini-
cal practice including lecting appropriate measures,
analysing data,providing feedback,interpreting results,
and incorporating the 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 individualid nature of quality of life are also examined.
Using quality of life measures
in clinical practice
Quality of life measures have eight potential us in aiding routine clinical practice.They can be ud to prioriti problems,facilitate communication,screen for potential problems,identify preferences,monitor changes or respon to treatment,and train new staff (box).They can also be ud in clinical audit and in clinical governance.The first five of the 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 ud 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 dia. 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 dia 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-cific patient outcomes(for example,anxiety and depres-
sion)in situations where treatment is aimed at achieving
a particular outcome.Quality of life is a highly individual
concept.Mount and Scott likened the asssment of it to
asssing the beauty of a ro6:no matter how many
measurements are made(for example of colour,smell,
and height),the full beauty of the ro is never captured.
特种设备使用管理规则
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 clost.The individual nature and the
shortcomings of many existing measures are discusd
further in the next paper in this ries.7
The routine u of quality of life measures is no
substitute for training staff.There is the danger that
staff may e the u of the asssment as an alternative
to communicating with patients rather than as an aid
to care.Training in the u 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 the asssments and other outcome measures for
a different ca 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
remit of medical care.8This rais a number of ethical
concerns.Firstly,the act of measuring quality of life in
a clinical tting may generate the expectation that the
clinician will be able to influence it:otherwi,what
would be the purpo of measuring it?In situations
where this is not possible,patients may be en to be
harmed by the process of measurement.Secondly,
Additional
information about
using measures for
clinical
马兰菊
improvement and
properties needed
for u in clinical
practice can be
found on the BMJ’s
website
Education and debate
This is the
cond in a
ries of five
articles
Department of
Palliative Care and
Policy,King’s
College London
and
St Christopher’s
Hospice,New
Medical School,
London SE59PJ
Irene J Higginson
professor
动画片人物Academic
Rheumatology,
University of
Nottingham,
Nottingham City
Hospital,
Nottingham
NG35DE
Alison J Carr
ARC nior lecturer
in epidemiology
Correspondence to:
农村环境I J Higginson
irene.higginson@
kcl.ac.uk
Series editors:A J
Carr,I J Higginson,
P G Robinson
BMJ2001;322:1297–300
some pressure groups,such as the movement for inde-pendent living in the United States,have oppod the clinical measurement of quality of life on the grounds that it reprents 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 ud to lobby for sufficient resources or to inform health and social policy.Thirdly,chronic dia affects and is affected by broader aspects of people’s lives,such as their relationships and social support,and information on the aspects can influence treatment decisions and asssments of healthcare need.中国战区划分图
Measuring quality of life
Properties of the measure
In addition to the properties needed when using a measure in rearch,such as validity and reliability,in clinical practice a wider range of properties are required to ensure that a measure can be
ud routinely.The include the appropriateness and acceptability of the measure,its responsiveness to clinical change,and its interpretability(box).(A more detailed version of this box appears on the BMJ’s website.)
Transferring measures from rearch to practice Barriers to the routine clinical u of outcome measures,such as quality of life,include concerns about cost,feasibility,and clinical relevance.9For a measure to have clinical ufulness 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 uful clinical data.10Most existing measures were developed for u in clinical rearch11where time and budgetary constraints are different from tho in clinical practice. Some quality of life measures require trained staff to administer them and are time consuming,taking20-30 minutes to complete.Similarly,since the purpo of measuring the quality of life in clinical trials is to com-pare groups of patients(usually over relatively short periods)asssments of existing measures have focud on their performance in the situations.Such situations are different from clinical practice where the purpo of measurement is to asss change in individual patients,in some instances over many years.12Furthermore,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 ch
anges in the measures should be interpreted over long periods.This is the problem of“respon shift,”discusd in the first paper in this ries and which will be revisited in a later paper about who should measure quality of life.1314
A small but growing number of instruments ud to measure quality of life specifically in clinical practice are available.The dia repercussion profile15asss a patient’s perception of handicap in rheumatoid arthritis, osteoarthritis,and back pain.Other examples include the support team asssment schedule,16the Edmonton symptom asssment scale,17and the palliative outcome scale,18all of which were developed specifically for pallia-tive care,and the measure yourlf medical outcome profile(MYMOP),19designed for u in primary care.
Quality of life measures will never capture all aspects of life that are
important to an individual
I
纪律准则M
A
G
E
S Education and debate
Many of the instruments are known to be reliable and valid but trials are required to evaluate their routine u in clinical practice.
Interpreting results
Scores from quality of life measures in studies are often prented as means.While this is uful 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 vere?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 vere.18Reducing the number of patients with vere pain was considered to be the clinically important aspect of the support team asssment 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 adverly.The organi-sation’s culture becomes important.21Staff will need training in using and interpreting the measure,as they would for any new asssment tool.T o be of most value quality of life measures should be incorporated into the clinical record and the results discusd at clinical review meetings.22Suggested 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 the measures in clinical practice is that their problems are identified and dealt with and that treatment decisions are bad on their priorities and preferences.Evidence for the ben-efits is lacking becau the measures are rarely ud in clinical practice.In rheumatology,where quality of life has been an important outcome in clinical trials for15 to20years,surveys in the United Kingdom suggest that little u is made of the measures in clinical practice.23 Moreover,there is some suggestion that even when quality of life measures are ud they do not influence clinical decision making.Analys of clinical judgment have highlighted discrepancies between the ways some clinicians think they make decisions and the way they actually do.24The effect of information from the meas-ures on clinical decision making ems small,25but the data were collected before the introduction of high pro-file quality of life measures(such as the medical outcomes survey short form36(SF-36)).粒子数反转
One way of ensuring that quality of life asssments influence clinical decision making is to u 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 bad on them.An evaluation of the role of the measures in tting clinical goals in patients with rheumatoid arthritis has just been completed(RA Hughes et al,personal communication, 2000).The clinical rvice
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 rvice.26Evaluation of audits in one health region
in the United Kingdom identified changes in clinical
rvices 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 eking infor-
mation by health professionals.27However,there was
no analysis of whether patients’outcomes changed,
and further work is needed to asss this.Using quality
of life measures,such as quality adjusted life years
(QALYs),to determine the relative value of different
rvices or interventions is difficult becau of the“dis-
怎么看电脑温度ability paradox.”People with vere or even life threat-
ening dia may not rate their quality of life as
significantly poorer than people with mild dia or
people who are healthy.This makes it difficult to
Education and debate
directly compare groups of patients with different dis-eas in order to allocate resources.The implications of the paradox in measuring quality of life are discusd in more detail in veral papers in this ries. Implications for the future
T echnology
Many of the practical problems associated with measuring quality of life in clinical practice may be overcome by the u of new technologies.Computer-id 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.
Individualid measures
The increasing interest in developing individualid measures reflects the perception that quality of life is unique to individuals and cannot be adequately assd using standardid measures that as
k every patient the same questions and require respons to be lected from a predetermined t.The extent to which existing measures capture the quality of life of individual patients is discusd in the next paper in this ries.7 Individualid measures such as the schedule for the evaluation of individualid quality of life(SEIQoL)28 and the patient generated index29ask the same questions of all patients but allow them to specify their own respons.
The u of individualid measures in rearch 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 tting of realistic treatment goals.There may be opportunities to combine the approaches with short,standardid measures that include screening questions.Further evaluation of the performance of individualid measures in clinical prac-tice is required.This should be developed in parallel with statistical methods that allow data from individual-id measures to be analyd.
Rearch
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 ttings with appropriate psychometric asssment of their performance in individual patients over time.This rais the cond question,which relates to the definition and asssment of changes in the quality of life of individual patients:how do existing measures take account of changes in expectations, adaptation,and normalisation when asssing changes?The issues were highlighted in the first paper in this ries.13The third question concerns the clinical interpretation of the measures:what consti-tutes an important change in quality of life(and to whom is the change important)?Answering the 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 Rearch 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 Rearch Campaign.
Competing interests:None declared.
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The articles in this
ries are from
Quality of Life,which
will be published by
BMJ Books next
year
Education and debate
