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CURRENT COMMENT Quality-of-Life Assessment in Cancer Mercier M. Schraub S. Bransfield DD, Fournier J. Patient acceptance and differe nt ial perceptions of qua lity of life measures in a French oncology se lli ng.. Quality of Life Research I: 53-58, 1992 S ummary A 3-pan siudy evaluated French cancer patients' acceptance of self-rated qualily-of-life measures. the pred icti ve va lue of these measures, and the agree- ment betwee n patient and health provider ratings of pat ien t qua lit y of life. In Part J, 93% of 137 patients ind icated a w illingness to complete the Qualite de la Vie-Questio nn aire (QOL-Q) an ! Analogues Li neaircs pour 13 Mesure de 13 Qualite de In Vic (LA), and 63.6% indicated a willingness to be interviewed by a psychologist. Willingness to complete the scales was relaled to hospitalisation status a nd treatment modality. In Parts II and IIf , 1 00 patie nts were asked to complete the QOL-Q, the LA, the Karnofsky Index ( KI) and an adverse effects cheeldis t. and to undergo an in terview with a psychologis t. On the basis of th is interview, the psychologist rated the patient usi ng the QOL·Q, a nd cl assified his or her l evel of emotional distress. On- cologists rated the patient using the KI and the ad- verse eff ec ts checklist. The resul ts ind icate that the patients' ratings of their quality of life were higher than the psychologist's ratings, and that the QOL- Q has pred ic ti ve va lu e in identifying severc emo- tional di stress. In some a ge groups and in patients with certain cancer sites th ere was less agreement on the KI between doct or a nd patient. Thu s. the low levels of patient a nd ph ysician agreement could partially be explained by these fa cto rs . A moderate level of agreement was found betwee n patient and ph ys ician pereeptions of adverse effe cts. The study suggests that the QOL.Q, not the LA, may be use- ful as a screening t ool to identify pat ie nts with im- paired quality of life, and that self-rated measures should be in cl ud ed in qualiw.of-lifc assessment s. COmme n( Rr), Evaluation of cl inical modali ties for the treat- ment of ch ronic diseases has typically focused on outcome indicators such as length of survival, re- tardation of thc disease process and control of ma- jo r ph ys ical symplOms. C li nical decision making is o ft en guidcd b y s imilar end-points, with relativel y little systematic attent ion being paid to how va ri- ous treatments affect the patient's quality of life. In recent years, however. there has been increased interest in d etermining the extent to which medical treatments affect the patien t' s quality o f l ife. In view of the cons id erable number of patients a nd the substantial number of trials which are conducted with patients receiving pallia ti ve care, it is sti ll s ur- prising that so li ttl e tim e, money and ene rgy go to the study of quality of li fe as an outcome measu re in clinical trial s. It is a fort un ate development that clinician s, like the French oncology group, a re now acti vely involved in the measurement of qual ity of lif e. An imponant result of the study by Merci er et al. (1992) is [hat almost all of their patients were willing to fill out th ei r questionnaires. Th is means that pat ie nts arc not the bottleneck in quali ty-o f- lif e studies. However, Mercier et a l. (1992) as- sessed the quality of life of thei r patients at only one point in time. It therefore remains to be seen how many patients are willing to fill o ul these quest ion naires every time th ey come to Ihe el inic for a follow-up visit, especia ll y whcn thei r condi- tion con tinues to deteriorate. On the other hand, Sadura et al. (1992) havc been able 10 show that, provided that a comprehensive se t of measures is taken, quality-of-life data can be collected succcss- full y, evcn in mullice nt rc longitudinal trials of can· cer therapies. The ir conclusion that 'the commonly held beli ef that quality.o f-l ife data cannot be suc- cessfully collected in multicent er ca nce r tri al s is i n- correef is very reassuring. In contrast to somatic outcomes lik e surviva l. disease-free interval or surrogate markers, quality- of-life end-points are not culture free . Mercier el al. (1992) stale that a quality-of-life measure should be att u ned to the speci fi c cultu re in whi ch it is used . T his was the main r eason fo r developin g th eir own measure. If the trend towards researchers in dif- fe r ent cultures making their own instruments be- comes comm on practice. comparisons across cul-

Quality-of-Life Assessment in Cancer

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Page 1: Quality-of-Life Assessment in Cancer

CURRENT COMMENT

Quality-of-Life Assessment in Cancer Mercier M. Schraub S. Bransfield DD, Fournier J . Patient acceptance and different ial perceptions of quality of life measures in a French oncology selling.. Quality of Life Research I: 53-58, 1992

Summary A 3-pan siudy evaluated French cancer patients'

acceptance of self-rated qualily-of-life measures. the predicti ve value of these measures, and the agree­ment between patient and health provider ratings of patien t quality of life. In Part J, 93% of 137 patients indicated a w illingness to complete the Qualite de la Vie-Questionnaire (QOL-Q) an€! Analogues Li neaircs pour 13 Mesure de 13 Qualite de In Vic (LA), and 63.6% indicated a willingness to be interviewed by a psychologist. Will ingness to complete the scales was relaled to hospitalisation status and treatment modality. In Parts II and IIf, 100 patients were asked to complete the QOL-Q, the LA, the Karnofsky Index (KI) and an adverse effects cheeldist. and to undergo an interview with a psychologist. On the basis of this interview, the psychologist rated the patient using the QOL·Q, and classified his or her level of emotional distress. On­cologists rated the patient using the KI and the ad­verse effects checklist. The resul ts indicate that the patients' ratings of their quality of life were higher than the psychologist's ratings, and that the QOL­Q has predicti ve value in identifying severc emo­tional d istress. In some age groups and in patients with certai n cancer sites there was less agreement on the KI between doctor and patient. Thus. the low levels of patient and physician agreement could partially be explained by these facto rs. A moderate level of agreement was found between patient and physician pereeptions of adverse effects. The study suggests that the QOL.Q, not the LA, may be use­ful as a screening tool to identify patients with im­paired quality of life, and that self-rated measures should be included in qualiw.of-lifc assessments.

COmmen(Rr), Evaluation of cl inical modali ties for the treat­

ment of ch ronic diseases has typically focused on

outcome indicators such as length of survival, re­tardation of thc disease process and control of ma­jor physical symplOms. Cli nical decision making is often guidcd b y similar end-points, with relatively little systematic attent ion being paid to how va ri­ous treatments affect the patient's qua lity of life. In recent years, however. there has been increased interest in d etermining the extent to which medical treatments affect the patient's quality o f life. In view of the considerable number of patients and the substantial num ber of trials which are conducted with patients receiving palliati ve care, it is still sur­prising that so li ttle time, money and energy go to the study of quality of li fe as an outcome measure in clinical trials. It is a fort unate development that clinicians, like the French oncology group, are now acti vely involved in the measurement of qual ity of life.

An imponant result of the study by Mercier et al. (1992) is [hat almost all of their patients were willing to fill out their questionnaires. This means that patients arc not the bottleneck in quali ty-of­life studies. However, Mercier et al. (1992) as­sessed the qual ity of life of thei r patients at only one point in time. It therefore remains to be seen how many patients are willing to fill oul these quest ion naires every time they come to Ihe elinic for a follow-up visit, especia lly whcn thei r condi­tion con tinues to deteriorate. On the other hand, Sadura et al. (1992) havc been able 10 show that, provided that a comprehensive set of measures is taken, quality-of-life data can be collected succcss­full y, evcn in mullicent rc longitudinal trials of can· cer therapies. Their conclusion that 'the commonl y held belief that quality.of-l ife data cannot be suc­cessfully collected in multicenter cancer trials is in­correef is very reassuring.

In contrast to somatic outcomes like survival. d isease-free interval or surroga te markers, quality­of-life end-points are not culture free . Mercier el al. (1992) stale that a quality-of-life measure should be att uned to the specific culture in which it is used. This was the main r eason for developing their own measure. If the trend towards researchers in dif­fe rent cultures making their own instru ments be­comes common practice. comparisons across cul-

Page 2: Quality-of-Life Assessment in Cancer

C urrent Comment

tures and even languages would become fairly difficult, if not impossible. It is questionable, how­ever. whether every language should have its own quality-of-life inSlrument. Provided that great care

is taken in tra nslaling the instrument, il is possible to ma ke cross-cultural comparisons (European Group for Health Measurement and Quali ty of Life Assessment 199 1). The quality-of-life measure de­veloped b y the European Organization fo r Re­search on Treatmenl of Cancer (EORTe), the

EORTC QLQ-C (Aaronson et al. 1991), is an ex­ample of a measure which is developed in .a num­

ber of languages a t thc same time. Also, the World Health Organization is developing a quali ty-of-life

instrument which can be used in different cultures (Orley 1992).

Mercier et al. ( 1992) found a d iscrepancy be­tween the patient's own rating of his or her quality of life a nd adverse events a nd the rating as carried out by healthcare workers. Patien ts felt beller than healthcare providers thought they did: both psy­chologists and oncologists underestimated the patients' quality of life. This finding is corrobo­rated b y many studies in which self-report ques­tionnaires are used, s howing that (cancer) patients do not appear to have a poorer quality of li fe tha n

the healt hy population (Breetvelt & van D am 199 1). This fi nding seems to conlrast with the everyday experience of ph ysicians. nurses and o ther care­takers. One of the explanations might be that

patients shift their norms in the course of their d is­ease. What might be very hard to bear at the start of Ihe disease might be tolerable after some time. Th is phenomenon makes the interpretation of longitudinal quality-of-life data rather difficul t. Al­though patients might fee l worse as their disease progresses, this feeling does not show up in their quality-of-life ratings,

It is elear from the study by Mercier et al. (1992) that quality-of-life research is feasible, bu t "that

many questions remain. As the field is rather young and many researchers are working enthusiastically on it, there are high hopes thai Ihese problems wi ll be resolved in due time.

309

References

Aaronson NK, Abmffini S. Bullinger M. embeds D. Est3¢ J. et al. The EORTC Quality of life questionna ire: interim results of an international field study. In Osoba (Ed.) Effecl of cancer on Quality of life, pp. 185-203. CRC Press Inc .. Boca Raton. Boston. Ann Arbor. London, 1991

Breelvelt I, van Dam FSAM. Underreponing of canccr pa tients: thc case of response_shin. Social Scicncr and Mffiicinc 32 (9): 981-987. 199 1

European Group for Health Measurement and Quality of Life A$sessmenL CrO$s-cultural adaptation of heahh measures. Health Policy 19; 33-44. 1991

Orley J. Nc"'s from the World Health Organization. Quality of Life Research t: 277. 1992

Sadura A. I'ater J. Choba D, u:vine N. Palmer N. ct at. Qualit), oftife ass<:ssmcnl: pat ient compliance with quest ionnaire com­pletion. Journal of the Nalional Cancer Institute 84: 1023-1026. 1992

Summary and com mentary by: Drs FSAM I'un Dam and J S[(>msII"Qrd. Amsterdam Collaborating Center on Qual­ity o f Li fe, World Health Organization. University of Amsterdam, The Netherlands.

The Cost of Breast Cancer Recurrences

Hurley SF, H uggins RM. Snyder RD. Bishop J F. The cost o f breast canccr recurrences. British Journa l of Cancer 65: 449-455.1992

Summary This article describes Ihe costs of treating re­

current breast cancer in Australia, and relates them to different si tes. The median cost per recurrence was $AUS II 349 in 1988. A mulliple regression analysis was performed in order to explain the variation in costs. Costs initiall y increased as the duration of the episode increased. but flattened off as the duralion of the episode increased further. Fatal recurrences were more costly.

Commentary The authors claim that these data can be used

to audit management practices with a view to cost containment and 10 analyse the COSI effectiveness of breast cancer control strategies. I doubt that.

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310

First, the analysis is limited \0 recurrences. To be useful for economic evaluation, the study must in­dude data fo r the whole episode of care, from diag­nosis to cure or death. Second ly, the study does not include resources outside the healthcare system, for example costs of travel and time for the palients and their relati ves. Thirdly. any stud y that claims to be relevant for economic eval uation shou ld in­clude a discussion about alternatives and out­comes. Descriptions of costs of standard treatment is not enough. It is of course of interest to know

PharmacoEconomic$ 4 (4) 1991

the expected costs fo r recurrences, and to include them in the cost of treatment in order to give a more accurate estimate of savings from preven­tion. However, from this point of view the regres­sion analysis performed is difficult to understand since it mainly includes variables thai cannot be used as predictors (duration, fatal outcome, site of recurrenl tumour).

Summary and commentary by: Dr B. Jonsson. Stockholm School of Economics. Stockholm, Sweden.