Are quality of life measures patient centred?
BMJ 2001; 322 doi: https://doi.org/10.1136/bmj.322.7298.1357 (Published 02 June 2001) Cite this as: BMJ 2001;322:1357
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Dear Editor
The paper ‘Are quality of life measures patient centred?’ amply
demonstrates the complexity, maybe the impossibility, of measuring the
changing complexities of people’s lives with numerical scores [1]. Whilst
the aim of assessing this concept called quality of life may be laudable,
its lack of theoretical underpinning and the relatively small part that
health may play in it, has lead to the suggestion that
the measurement of subjective health status may be a more useful and
realistic objective[2].
Whichever framework we use the people who can best help researchers
to be patient centred are patients, and qualitative work has shown, for
example, the limitations of the SF-36 Health Survey in elderly patients in
the community [3]. My own work has been in developing an individualised
measure,Measure Yourself Medical Outcome Profile, MYMOP,[4] and in using
qualitative methods to evaluate its performance[5]. MYMOP is both brief
and problem specific and thus avoids some of the user
misunderstandings of more complex measures, but people with chronic
disease who were using it to measure the outcome of complementary
therapies found there were a number of important outcomes that it missed.
For example, some people were using complementary medicine in order to
reduce or
avoid orthodox medication, and success on this parameter was not measured,
as indeed it would not be by most health status or quality of life
questionnaires. Currently I am using qualitative methods in a similar
patient population to compare the patient centredness of EuroQol 5D, COOP
WONCA
charts, and MYMOP. Whilst all of the questionnaires fail to pick up the
more long term holistic changes that people value, such as an increase in
empowerment, and all of the questionnaires were problematic for some
people, the individualised measure was generally more able to reflect the
patient’s perspective.
Investigating health status measurement in this way leads me to be
increasingly enthusiastic about patient-generated measures, increasingly
modest in the claims we make about our scores, and increasingly certain
that the involvement of consumers in this research is vital.
Charlotte Paterson
general practitioner
Warwick House Medical Centre, Taunton, Somerset. TA1 2YJ.
c.paterson@ dial.pipex.com
1.Carr AJ, Higginson IJ. Are quality of life measures patient
centred? BMJ 2001;322:1357-60.
2. Leplege A, Hunt S. The problem of quality of life in medicine. JAMA
1997;278:47-50
3. Hill S, Harries U, Popay J. Is the SF-36 suitable for routine health
outcomes assessment in health
care for older people - evidence from preliminary work in community -
based health services in
England. Journal of Epidemiology and Community Health 1996;50:94-98.
4.Paterson C. Measuring outcome in primary care : a patient-generated
measure, MYMOP,
compared to the SF-36 health survey. BMJ 1996;312:1016-20.
5.Paterson C, Britten N. In pursuit of patient - centred outcomes: a
qualitative evaluation of the
Measure Yourself Medical Outcome Profile, Journal of Health Services
Research & Policy 2000;
5:27-36.
Competing interests: No competing interests
In their article, Carr and Higginson 1 provide an important
conceptual critique of current QoL measures and practices, which we can
support from the perspective of current research and clinical practice in
illicit drug (especially opiate) dependence and treatment.
Despite the fact that illicit drug dependence disorders are diseases
partly based on subjective criteria (e.g. loss of control), as defined by
ICD10 or DSMIV, there are a mere dozen or so articles reporting on QoL of
drug addicts in and out of treatment 2. This is in sharp contrast to the
recent explosion of QoL measures reported in thousands of RCTs, especially
in cancer or cardiology fields 3,4. One may speculate on the reasons of
this contrast.
It may be, that despite a huge amount of literature on the
behaviours and treatment of illicit drug users, research is simply not
interested in the quality of life from the perspectives of drug users’ who
may be perceived as a group of ‘undeserving’ patients or individuals
themselves responsible for potential losses in life quality. Or is it
that the potentially lucrative pharmaceutical market is missing for
illicit drug addiction treatment, which has been identified by some as a
key trigger behind the abundance of QoL research and measures in select
areas of medical treatment where diseases cannot be cured but need to
prove other benefits to patients.
But even based on the few instances where QoL measures have been applied
with illicit drug addicts, they greatly emphasize the question whether
these measures are “truly patient centred and to what extent they actually
represent the quality of life of individual patients or groups of
patients”5,6. It seems particularly evident in the illicit drug addiction
area that current QoL measures applied starkly reflect socio-cultural
hegemonic norms and values, which in most cases appear far removed from
illicit substance users key determinants of quality of life.
Furthermore,
QoL instruments appear largely inadequate to measure individual
differences or changes in priorities which can occur in a dramatic fashion
over the course of an illicit substance user’s life or treatment. From a
practical perspective, illicit drug users’ main ‘life quality’ priorities
are unlikely characterised by traditional concepts of work, finances and
leisure activities (as centrally measured in most standard QoL
instruments), but concern existential matters like housing, social
relations, independence, wellbeing or just basic survival. And these are
often interpreted quite differently from the ‘normal’ world. The
normatively pre-determined operationalisation of ‘negative social
interaction’ (as expressed by the prevalence of social interactions
related to gambling, drinking, parties) 7 in the measurement of what is
supposedly the patients’ QoL is an apt example illustrating that norms and
standards of what supposedly defines ‘quality’ in drug users’ lives are
set by others’ (i.e. researchers’) rather than the subjects themselves.
There is a great need and urgency to develop a basic sense of the QoL
experiences of illicit substance users based on their conceptions of QoL.
These patient-centred QoL instruments may then be more meaningfully
responsive to the effects of standard treatment (especially
pharmacotherapy) and may be used in conjunction with hard external
outcomes that have so far dominated outcome measures in this field 1.
The existing QoL measurement data for illicit opiate treatment
interventions suggests that current standard treatment (i.e. methadone
maintenance treatment) produces only very limited and only short-term
effects 6,8,9, yet we are far from certain in knowing whether these
empirical values in this particular arena even account for what is
relevant to patients as per the definition of Carr and Higginson. This
may be an opportunity for a beginning of important research work in this
research area.
Benedikt Fischer, PhD1,2
Jürgen Rehm, PhD1,2,3
Gregory Kim, BScH1,2
1 University of Toronto, Canada
2Centre for Addiction and Mental Health, Toronto
3Addiction Research Institute, Zuerich
1 Carr AJ, Higginson IJ. Measuring Quality of life. Are quality of
life measures patient centred? BMJ 2001; 322:1357-1360.
2 Fischer B, Rehm J, Kim G. Quality of Life (QoL) in Illicit Drug
Addiction Treatment and Research: Concepts, Evidence & Questions
(forthcoming). In: Westermann B, Jellinek C, Bellmann G, eds.
Substitution: Zwischen Leben und Sterben. Weinheim: Beltz Deutscher
Studienverlag,
3 Testa MA, Simonson DC. Assessment of quality-of-life outcomes. The
New England Journal of Medicine 1996; 334:835-840.
4 Sanders C, Egger M, Donovan J, Tallon D, Frankel S. Reporting on
quality of life in randomised controlled trials: bibliographic study. BMJ
1998; 317:1191-4.
5 Carr AJ, Higginson IJ. Measuring Quality of life. Are quality of
life measures patient centred? BMJ 2001; 322:1357-1360.
6 Gill TM, Feinstein AR. A critical appraisal of the quality of
quality-of-life measurements. JAMA 1994; 272:619-626.
7 Reno RR, Aiken LS. Life activities and life quality of heroin
addicts in and out of methadone treatment. The International Journal of
the addictions 1993; 28(3):211-232.
8 Torrens M, San L, Martinez A, Castillo C, Domingo-Dalvany A,
Alonso J. Use of the Nottingham Health Profile for measuring health status
of patients in methadone maintenance treatment. Addiction 1997 92:707-716.
9 Torrens M, Domingo-Dalvany A, Alonso J, Castillo C. Methadone and
quality of life. The Lancet 1999; 353:1101.
Competing interests: No competing interests
Can we always accept patients' responses at face value?
Carr and Higginson (1) correctly point out that standardized Quality
of Life scales, like the SF-36 and the EuroQol, are based on health
professionals' definitions of what is important in assessing quality of
life, and therefore may well not address what is most important to
patients in judging the quality of their lives. As an example, they cite
a study that reported that finding a parking place was the most important
factor influencing the quality of life of patients with cancer attending
one outpatient clinic, and this issue was not addressed by any of the
measures used (2).
Admittedly, it is unlikely that health professionals who probably
have regular parking slots in the Medical Center parking facility would
rate this issue as high as patients do. Nevertheless, this is a striking
example that should cause us to re-examine the proposition that we can
unhesitatingly rely on patients' self-reports to judge the quality of
their lives. If a patient did rate parking as a greater concern in
his/her life than, say, freedom from pain or the side effects of
chemotherapy, we need to ask:
(a) Is parking the #1 problem because everything else is so great? Or
is the patient concealing a deep concern by disclosing a triviality?
(b) Is the patient not thinking seriously about the impact of a
potentially fatal illness on his/her family? If so, what else is he/she
not thinking about?
(c) Is this a transient, unstable response, perhaps a result of the
patient coming to the clinic on a cold, rainy day without an umbrella and
not being able to find an enclosed parking space?
If the response is transient and unstable, how much attention should
we really pay to it? Should health professionals try to get the patient
to focus on more important issues? Or should these idiosyncratic
responses be accepted at face value, on the grounds that everyone responds
differently to the circumstances of serious illness, and we are not
empowered to challenge a patient's response?
Scoring the quality of patients' lives by using weights derived from
the general population or samples of other patients with comparable
illnesses has problems, and Carr et al. have effectively made a case for
more idiographic assessment. But it is also possible that idiosyncratic
responses are substantially affected by momentary fluctuations in
experience and affect, and therefore do not really represent thoughtful,
consistent, reasonably stable attitudes and responses to the patients'
experience. If so, their absence from standardized scales may be a
benefit, not a deficiency, in the assessment of quality of life. This is
the other side of the coin in this much needed discussion.
Arthur S. Elstein, Ph.D.
University of Illinois at Chicago,
Chicago, IL USA
1 Carr AJ, Higginson IJ. Measuring Quality of life. Are quality of
life measures patient centred? BMJ 2001; 322:1357-1360.
2 Coates AS, Kaye SB, Sowerbutts T, Frewin C, Fox RN, Tattersall MHN.
On the receiving end: Patients' perceptions of the side effects of cancer
chemotherapy. Eur J Clin Oncol 1983;13:203-208.
Competing interests: No competing interests