METHODS AND PROBLEMS OF DEVELOPING AND USING INSTRUMENTS FOR MEASURING QUALITY OF LIFE OF THE MENTAL

1
METHODS AND PROBLEMS OF DEVELOPING AND USING
INSTRUMENTS FOR MEASURING QUALITY OF LIFE OF THE
MENTALLY ILLBourkovski G.V., Kabanov M.M.,
Kotsubinski A.P., Levchenko E.V., Lomachenkov
A.S.The St.Petersburg V.M.Bekhterev
Psychoneurological Research InstituteWorld
Health Organization Research and Training Centre
(St.Petersburg, Russia)
2
One of the most interesting features of
scientific life of the international medical
community over the past few years has been a
dramatic increase in the number of papers
dedicated to the development of instruments for
measuring quality of life of the ill and to the
study of their work capacity. This activity of
scientists testifies, on the one hand, the
ever-growing importance of the quality of life
problem in the contemporary society, and, on the
other hand, the existence of considerable
methodological problems researchers face when
they are not satisfied with the results of the
efforts of certain scientific groups and start
developing their own measuring instruments.
3
The present paper is dedicated to the methods and
problems of developing and using instruments for
measuring quality of life in psychiatric
practice. The paper is based on a long-term
research work of the Bekhterev Institute, one of
the World Health Organization (WHO) regional
research and training centres, on developing a
number of quality of life scales. The work (Table
1) , initiated by the WHO in 1991, began with
developing the core WHOQOL-100 module whose
approbation has been going on to present day. The
development of the Russian version of the
specific module QOL-SM (Quality of Life Specific
Module) for the mentally ill began, in accordance
with the WHO protocol, in 1996.
4
According to numerous publications on the
WHOQOL-100 approbation, a good deal of evidence
has already been obtained testifying that, on the
whole, the WHOQOL-100 is satisfactorily stable
against repeated completings (test-retest
criterion) that all the WHOQOL-100 sub-scales
have their specific content (factor test
procedures) that all the WHOQPL-100 sub-scales
do not conflict with other existing instruments
(i.e. they highly correlate with similar
instruments) that the WHOQOL-100 differentiates
ill persons from well controls that the
WHOQOL-100 sub-scales differentiate patients at
admission from patients at discharge.
5
In the course of developing and adapting quality
of life subjective scales to a contingent of
mental patients we have come across several
specific phenomena that make it difficult to
interpret the results obtained and urge one to
set limits for using subjective instruments in
psychoneurological practice. However, it remains
unknown to what extent one should limit the
application of quality of life subjective scales
and how to interpret the results obtained in
borderline spheres. As to the attempts to answers
these question, they result in new philosophical
and methodological questions among which the
definition of the very notion of quality of life
is a key issue.
6
The first practical problem researchers face
(first line of Table 2) is low
sensitivity of obtained data on the quality of
life of patients with attention, comprehension,
self-reflection and motivation defects. Such
patients have low ability to correlate their
emotional states with offered scales and,
consequently, give high percentage of random or
stereotype answers or simply refuse to answer at
all. It is necessary to develop for such
contingents special rules and procedures of
presenting questionnaires such rules and
procedures should include special methods of
strengthening the patients motivation to
complete the questionnaires.
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The second problem (second line of Table 2) is
low sensitivity of quality of life subjective
indices when using them with patients with low
emotional reactivity or with apathy since the
patients' quality of life subjective assessment
only slightly depends on the objective state of
affairs, which can manifest itself in low
variativity and stereotype of their answers. Even
high effectiveness of rehabilitation of such
patients according to other objective medical or
life indices can only slightly effect quality of
life subjective indices causing thus an
unfavourable for patients redistribution of
rehabilitation resources.
8
The third problem consists in poor
interpretability of quality of life subjective
indices when studying obviously or potentially
criminogenic contingents whose subjective
well-being is connected with causing harm to
other people. The above can also be said about
patients with algolagnia components in the
disease structure. Apparently, the interpretation
of the quality of life subjective indices of such
people can be possible only in case of change of
their pathological motivation, which presents a
complicated methodological problem. The
introduction of motivation adequacy control
scales here is a must.
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The fourth, most complicated, problem consists in
the distortion of outcome measurements due to
the disorders of the patients (and often of
healthy persons) motivation and assessment
functions. To measure something correctly, the
measuring instrument must not depend on the value
being measured. However, in psychiatry in the
process of measuring the patients quality of
life, the patient appears to be put in a
paradoxical situation when he/she must assess
his/her own rocky well-being using that very
assessment instrument which, probably, does not
function properly either. The very feeling of
well-being or satisfaction with life can be, and
often is, a morbid symptom.
10
Summing up the above, it is necessary to note
that psychiatry is a sphere which all the above
considered limitations to using quality of life
subjective indices pertain to. Therefore, even
when using instruments whose validity has been
proven in large-scale investigations, one should
always compare subjective indices with objective
psychopathological scales. It is especially
urgent today, since the development of correction
sub-scales, due to its laboriousness, seems to be
a remote-future project.
11
Even the given brief review of the existing
problems related to using quality of life
instruments proves the need of a deeper
comprehension of the motivation and
methodological basis that urges researchers
working in different fields of science in
different countries to continue their
investigations. So what makes researchers,
including those working at the WHO initiate these
investigations again and again? What are their
claims?
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TABLE 3Motives for developing quality of life
instrument.1 To humanise medicine by way of
using non-clinical subjective criteria of
effectiveness 2 To overcome a discrepancy in
the assessment of treatment effectiveness by
doctors and by patients 3 To overcome the
dissociation of medical investigations 4 To
achieve the comparability of treatment
effectiveness measurements in different cultures
5 To increase the reliability of information
used in the utilisation of health care resources
on national and international levels
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It is possible to surmise, however, that, apart
from the above considered obvious motives, there
also exists a deeper source of motivation for
developing quality of life measuring instruments
conditioned by global social processes whose
action is illustrated in Scheme 1.
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SCHEME 1Public health care in contemporary world
INTERPENETRATION OF CULTURES
VARIETY OF DEMANDS
RANDOM PRESCRIPTIONS
DOCTORS
PATIENTS
DIVERSITY OF TREATMENT METHODS
DIVERSITY OF PARAMEDICAL INFLUENCES
NEW MEDICAL TECHNOLOGIES
NEW INFORMATION TECHNOLOGIES
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One can surmise that the considered global
situation was the basic motive for the WHO to
initiate the development of a universal
transcultural measuring instrument fit for use in
different public health spheres. Indeed, the WHO
not only initiated the development of scales but
has also created a unique methodology of their
realisation the basic stages and problems of
this methodology are presented in Table 4.
16
The review of the stages of developing a
questionnaire shows that its methodology is based
on a thoroughly planned system of laborious
methods stated in the appropriate protocol
obligatory for all countries participating in the
project. It is obvious that the WHO methodology
gives extraordinary consideration to the work on
defining the appropriate notions, which is due to
the fact that the notion of quality of life is
actually a philosophical notion indicating such
degree of abstraction which the developers of
measuring instruments very seldom meet with.
17
As to the practical consequence of the
impossibility to formulate a precise definition,
it consists in another impossibility the
impossibility to validate directly the being
developed scales by way of using the gold
standard. To put it more precisely, it is
impossible to rely on the results of a direct
measurement of quality of life with another,
better but effort-consuming, instrument, for
instance, with an interview of experts, because
the being measured parameter is in itself
subjective, i.e. hardly fit for expert
assessment.
18
Certainly, the key notion here is that of quality
of life. Let us consider Scheme 2 that presents
an implicit graphic notion of quality of life and
elucidates both the WHO quality of life
assessment concept and out modification of it
(designated with a red line).
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SCHEME 2Quality of life assessment conceptAn
individuals perception of their position in life
in the context of the cultural and value systems
in which they live and in relation to their
goals, expectations, standards and concerns
(WHOQOL, 1993)
Selection of respondents
HEALTH
SELEC- TION OF FACETS
SELEC- TION OF QUESTIONS
TRANS- CULTURAL- NESS
SUBJECTIVITY
QOL
MOTIVA TION
Selection of respondents
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However, this understanding of quality of life
contains no idea of the hypothetical adaptive
role of this integrating experience by an
individual of their life. It would be natural to
surmise that of all the individuals experiences
they single out as quality-of-life-related only
those which they use for conscious or unconscious
decision making to change their life. There is
an intuitive feeling of a necessity to introduce
the notion of motivation which would allow
finding the medical gold standard and using it
for the development of measuring scales.
21
In case of accepting motivation (or its
equivalent) as a component part of the quality of
life notion, the quality of life definition would
be termed something like that Quality of life
is subjective life experience that motivates the
individual to improve their quality of life and,
in a specific medical case, to preserve and
improve their health. With such wording the QOL
scale can become basic for effective public
health resource utilisation.
22
This is a criterion additional to the accepted by
the WHO opposition ill person well person.
Other things being equal, priority is to be given
to a drug (or method) that to the greatest degree
intensifies the patients sanogenic motivation.
Medical quality of life (this term is probably
more appropriate for conveying the meaning of the
being considered scales) should be maximal in
individuals whose experiences urge them to aspire
for health. Such understanding of QOL by the
St.Petersburg Regional WHO Centre is illustrated
in the scheme with the element MOTIVATION under
which a formal definition of quality of life is
given.
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So what objections can be raised to modifying the
notion of Medical Quality of Life? Certainly,
this notion will make more complicated the
already complicated and labour-intensive
procedure of developing quality of life scales.
Even if we set ourselves only a limited task to
modify the WHOQOL-100, we will have, at the
least, to make two additional selections of
questions in order to exclude those of the 100
available questions which do not differentiate
ill individuals with self-destructive behaviour
(including suicidal behaviour and non-compliance)
from ill individuals with sanogenic behaviour
(provided we use only contingents of ill
persons).