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
14 June 2001
Arthur S Elstein
Professor, Dept. of Medical Education
University of Illinois College of Medicine, Chicago, IL USA
Rapid Response:
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