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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)
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.
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.
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.
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.
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.
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.
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.
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 patient’s 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.
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.
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?
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
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.
SCHEME 1Public health care in contemporary world INTERPENETRATION OF CULTURES VARIETY OF DEMANDS RANDOMPRESCRIPTIONS • DOCTORS PATIENTS DIVERSITY OF TREATMENT METHODS DIVERSITY OF PARAMEDICAL INFLUENCES NEW MEDICAL TECHNOLOGIES NEW INFORMATION TECHNOLOGIES
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.
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.
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.
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).
SCHEME 2Quality of life assessment concept“An individual’s 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
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 individual’s 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.
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.
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 patient’s 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.
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).
