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QUALITY OF LIFE OF PATIEIVTS WITH 
CAIVCER 
Prof. Lajos Kullmann, MD 
National Institute tor Medica! Rehabilitation, Budapest, 
Lorand Eotvos University of Sciences, Faculty of Special Education, Buda pest 
Summary 
Quality of life evaluation of cancer patients is a chal­
lenging task due to the great variety oj possibilities. The 
paper first gives an overview oj the methods of quality 
of life assessment. Main target areas and conditions 
of the applicability are reviewed, including the use of 
proxy raters. For rehabilitation purposes the application 
oj quality oj life profiles are recommended. According 
to most researchers generic measures should complete 
the use of condition diagnosis or symptom) specific 
instruments. The second part oj the paper is based on 
a literature review. Review of the effects of therapeutic 
BACKGROUND 
Quality of life is a relatively new and a rather challenging 
broad ranging concept with a multitude of different defini­
tions. The definitions published in literature differ both 
conceptually and methodological ly. In the present paper 
we shall use the definition of WHO that was developed by 
the multi-national and multidisciplinary WHOQOL-Group. 
According to this "quality of lije is an individu al's percep­
tion of their position in life in the context of the culture and 
value systems in which they live and in relation to their 
goals, expectations, standards and concerns. It is a broad 
ranging concept affected in a complex way by the person 's 
physical health, psychological state, personal beliefs, social 
relationships and their relationships to salient features of 
their environment" ( 1 ). Thus, quality of life is different f
r
om 
health status, even if health is interpreted by WHO's broad 
health concept. Health status assessment is restricted to 
assessment of dimensions directly influenced by the health 
care, such as physical health, mental health, social participa­
tion adequacy of interpersonal relations), role-functions e.g. 
job, schooling), and perceived general health (2). 
If quality of life is a challenging concept, evaluation of 
cancer patient's quality of life is even more challenging. 
The diagnosis of cancer is bound to a pathological process. 
This pathology has great variability, it may affect ali organs, 
and may create metastases in a variety of other organs. The 
pathology may affect people in different ages, and age has 
specific influence on the quality of life (3). The cancer may 
be in different stages, end stage malignant disease is charac-
lil 
interventions at different cancer pathologies on the quality 
oj /ife is mainly based on randomized controlled studies. 
Very few studies reported on significant improvement. 
Severa! systematic reviews evaluate methodological que­
stions concerning quality oj life assessmentlmeasurement 
in cancer patients. The multitude oj available measures 
may make any comparisons difficult. Weil established, 
frequently used direct measures are preferred. Finally a 
few papers repo rt on the effects oj quality of life assessment 
on the communication between clients and professionals, 
and consequently on possible beneficiat effect on quality 
oj life of the assessed pe rson. 
terised by decreasing quality of life. Additionally ali forms of 
therapy chemo- and radiotherapy, surgery) and their combina­
tion may seriously affect the person's quality of life. 
This paper aims at discussing some of the difficulties and 
problem areas of addressing and evaluating cancer patient's 
quality of life. It presents the personal view of the autho1 
based on a literature review. 
METHODS OF QUALITY OF LIFE 
EVALUATION 
As mentioned briefly there are numerous different definitiom 
of quality of life. The measurement approaches are also mul­
tiple. Table I provides an overview of different approaches. 
Table 1: Methods of quality of lije assessment. 
questionnaires 
• profiles
- generic
- specific
- indexes
visual analogue scale 
• administrated in itself
• administrated with questionnaires
observation
• without personal participation
with personal participation

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Questionnaires instruments, measures 
To date the most frequently used way of quality of life 
measurement is the use of questionnaires. Basically two 
types are available, profiles and indexes. Pro.files usually 
have relatively large number of items connected to many 
different determinants of quality of lite. Weil developed 
profiles may help therefore understand a single person 's 
quality of life influencing factors in detail, thus those have 
more importance in clinical practice. Also specific groups 
may be assessed and population related consequences may 
be drawn. Yet, this has to be done with great care due to the 
individual nature of quality of life and the great variety of 
e.g. cancer pathologies.
Quality of life i11dexes on the other hand are usually composed 
of a few items of which one common index number may be 
calculated. These are more frequently used in healthcare pol­
icy-making although indexes have been used also in clinical 
practice including cancer care. One of those, the Spitzer-indcx 
composed of five items each with three point answer scales 
has been used also in recently published papers (4-6). 
Getting back to profiles these may be generic or specific. 
Generic quality o.f life profiles are measurement tools appli­
cable at the population at large or at least at the majority of 
it, excluding e.g. children, or persons with major cognitive 
or communication disturbances. The profiles are developed 
according to the interpretation of the quality of life concept 
of the developers. For this reason their content may be 
largely di fferent. Some are rather health status measures, yet 
interpreted widely as quality of lite assessment instruments. 
Another problem may arise f
r
om the method of development. 
Measures e.g. developed in one single cul ture may have bias 
if utilized in other cultures. 
Specific quality oj lije i11strw11e11ts target different population 
groups. The specificity of these groups may be based on 
their social status minorities, refugees, etc) or on their health 
condition. Under health condition we may further differenti­
ate. Some instruments target specific diagnoses, e.g. HIV 
patients, cancer patients, and may go into further detail based 
on the affected organs or body parts brain tumour, breast 
cancer, head and neck cancer. etc). Other instruments have 
been developed on symptom basis pain, nausea, fatigue). 
The aim of such developments is usually the creation of an 
instrument specific enough to demonstrate the effects of 
some therapeutic interventions. Often drug manufacturing 
firm s attempt to demonstrate the superiority of their products 
compared to other medicaments. However, this approach 
may also have a challenge. namely the broad range of qual­
i ty of life affecting factors may be neglected thus only a 
few aspects of quality of life of the evaluated person may 
be learned at the single use of such instruments. 
Fram the ICF point of view quality of life- if its definition 
by WHO accepted - is largely but not solely) related to the 
participation di mension of the person · s I i fe. Some question­
naires contain almost only items related to the existence of 
specific symptoms. Thcse fit into the body function, or body 
structures dimension. In some other instruments the major­
ity of items may relate to activities. It can be argued that 
health care workers are more familiar with these dimensions 
they may feel more comfortable and sate if their evaluation 
process is restricted to these areas. The aim of rehabilitation. 
however. is to improve the perso11 's quality oj lije as the_,, 
experience it. Patient's functional performance and quality 
of life do not correlate necessari ly moreover functional gain 
during rehabilitation does not necessarily improve patient's 
quality of life (7). As people's quality of life is largely 
influenced by factors of the participation dimension, not to 
forget the environmental factors. we advocate for the com­
bined use of generic and specific measures even at studying 
specific therapeutic intervention of cancer patients. The 
use of combined measures is supported in severa( recent 
publications as well (8-9). 
Visual analogue scale 
In the early years of quality of life assessments in health 
care visual analogue scales have been widely used. As the 
instrument development has been improved and the instru­
ments became scientifically well founded thc use of visual 
analogue scales have been decreased but not disappeared. 
Yisual analogue scale may be used for the assessment of the 
overall quality of life. Important is the well conceptualized 
and well and widely understandable definition of the two 
cndpoints of the scale. If these requirements are satisfied 
reliable answers may be expected from the rcspondents. 
As mentioned above Spitzer·s visual analogue scale. with 
cancer specific end-point definitions is stili in use over two 
decades following its introduction (6). 
Another use is bound to questionnaires. usually indexes. In 
such cases each item of the instrument may be answered on 
the visual analogues scale bound to that specific item. 
Observation 
If cognitive and/or communication problems prevent the use 
of either questionnaires or visual analogue scales observa­
tion of the person and his/her bchaviour may be useful in 
studying their quality of life. One may observe the behaviour, 
the communication, and the interpcrsonal interactions of the 
person assessed. Observations may be described as narra­
tives or perhaps more practically previously defined actions 
or features may be counted and documented. 
Observations may be performed with or without personal 
presence of the observer from behind a mirror-window or 
by videotaping in the later case). Both have advantages and 
draw-backs. lf the obser ver is presen! everything may be well 
-

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seen but his/her presence may disturb the real life situations. 
On the other hand if the observer is not present some actions, 
signs or other features may remain hidden. 
Proxy 
In case of doubt of the feasibility of questionnaire's use by 
the patients proxy information may be gathered. In cancer 
care this is often the situation at the end-stage of the disease 
course. Only persons who know the patient substantially 
well may act as proxies. These are usually partners, family 
members and often health or social care staff members. 
The same or very similar instruments are used in such 
cases as for direct patient interviews. However, a number of 
problems arise with proxies. How reliable and valid is their 
assessment? Is there an over or under estimation of prob­
lems of the patient in different life areas? These questions 
have no definitive answers yet, further studies are needed. 
Patient-proxy agreement was higher in the case of patient's 
significant others e.g. partners as in the case of professional 
proxies. Proxy raters tended to report more quality of life 
problems compared to patients themselves in a comparative 
study ( 10). On the other hand some evidence support the 
view that patient's and family carer's quality of life in severe 
malignant disease correlate ( 11 ). 
LITERATURE SURVEY 
Publications on quality of life of cancer patients and the 
effect of their treatment on quality of life are numerous. 
Many papers, however, report on symptoms, co-morbidities 
or on leve! of functioning, and interpret these and their 
changes as quality of life and its improvement or decrease. 
This approach is not fitting into the WHO's quality of life 
concept and definition, the starting point of our present 
paper. Direct assessment of quality of life is preferred. 
Experiencing the numerous uncertainties concerning quality 
of life assessment of cancer patients a literature survey was 
performed with restricted titles f
r
om the Pub Med database. 
We used the combination of the terms cancer, quality of life, 
and assessment or measurement. As for study methodology 
randomized controlled trials, well designed controlled clini­
cal trials and review papers, for language English or German 
were preferred. The search was limited to publications of the 
years 2004-2007. However, some references of these papers 
were also reviewed. Altogether 61 papers have been reviewed 
of these 27 have been selected for drawing conclusions due 
to methodological quality. 
Based on their contents and conclusions the studied papers 
could be classified into the following three categories: 
•
randomized controlled studies and some well designed
controlled clinical studies) on the effects of therapeutic
interventions at different cancer pathologies and differ-
111 
ent stages, including effects on quality of life utilizing 
well established valid, reliable) quality of life assessment 
instruments, 
•
reviews, meta-analyses evaluating methodological ques­
tions concerning quality of life assessment/measurement
in cancer patients,
•
papers on the effects of quality of life assessment on the
communication and on the quality of life of the assessed
person.
A concise discussion of these study categories is given in 
the next part of the paper. 
Effects of therapeutic interventions on the 
patients' quality of lite 
Altogether 16 papers met the inclusion criteria into this cat­
egory of studies (9, 12-26). Methodologically the majority 
reported on randomized controlled trials, and two clinical 
trials were also added. As for the diagnosis the papers rep­
resented rather heterogeneous cancer groups including oral, 
gastrointestinal, haematological, breast, gynaecological, 
prostate, head and neck cancers as well as brain metastases 
and end stage cancer. The majority of interventions were 
drug treatments often comparing two different medicines 
or combinations bul surgery, radio-, nutrition-, and psy­
chotherapy and palliative care have also been reported in 
some studies. 
Ali papers reported the use of established direct measures 
of quality of life. These had a large variety. Out of the 
generic instruments the Medica! Outcome Studies Short 
Form SF-36) was most frequently utilized but some oth­
ers like EuroQol EQ-5D) and WHOQOL-BREF have also 
been used. 
Of the cancer specific instruments the European Organi­
sation for Research and Treatment of Cancer Quality of 
Life Questionnaire EORTC-QLQ-C30) seems to be the 
most popular followed by the Functional Assessment of 
Cancer Treatment - General Yersion FACT-G) developed 
in the USA. Both of these have organ specific modules 
e.g. EORTC-QLQ-PR25 for prostate, EORTC-QLQ-LC 13
for lung, FACT- C for colorectal cancer. Additionally also
symptom specific FACT modules have been used e.g.
FACT-F for fatigue, FACT-An for anaemia. In addition
further site specific quality of life measures and a variety
of symptom specific instruments have been utilised. Worth
to mention are six different pain scales, as well as measures
of distress, depression, anxiety, memory, emotional well
being, sexuality, and social well being. We may conclude
that this richness of instruments utilised creates difficulties
in comparing studies.
Regarding the outcomes most of the papers draw ca
r
eful con­
clusions. In the majority of the studies no or non significant 

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improvements of quality of life have been found following 
the intervention, or there was no or 11011 significant differ­
ence between the outcomes of the study arms comparing 
alternative interventions. In one study the improvement was 
temporary. On the other hand out of three studies with only 
short-term follow-up. two reported on significant quality 
of life improvement. The authors point out the necessity of 
longer follow-up. 
Methodological questions concerning 
quality of life assessment in cancer 
patients 
Discussion of this category or papers is based mainly on 
literature reviews (8-9. 27-33) and one randomised control­
led tria] (34). This last paper studied whether presentation 
order of the instruments influences the responses. Two of 
the following three measures, EORTC-QLQ-C30, FACT-G 
and the Functional Living lndex-Cancer have been used in 
randomly selected order. No effect of the presentation order 
was found. 
Fram the performed survey we may conclude that in-spite of 
the constantly increasing number of studies on the quality 
of life of cancer patients there is a considerable variety of 
interpretations of the quality of life concept. For this reason it 
seems to be appropriate that authors stale their understanding 
and use of the most important terms in ali publications. 
The most uniform conclusion of the review papers is the very 
wide variety of the instrurnents utilized in surveyed studies. 
One of those could not find the same instrument in more than 
10% of the reviewed papers (32). Our experience is some­
what more favourable. The most frequently used instruments 
have been mentioned earlier. The measurement tools vary a 
great deal f
r
om methodological points. Not ali are validated. 
or the validation is based on small study samples. 
Quality of life assessment in paediatric age provides anothcr 
methodological problem. Usually children at the age of 7 or 
8 years are able to give reliablc responses to questionnaires. 
Sometimes they may provide information that is not available 
from e.g. parents. However, the use of additional view-points 
of parents or health-care professionals can provide val id 
and important complementary in format ion (33). Such view 
points should always be evaluated with great care. 
Most papers report on increasing f
r
equency of quality of life 
assessment as part of the outcome assessment. The previous 
chapter summarized those seeking information on the effect 
of therapeutic interventions. The other area with increasing 
interest is palliative care in end stage cancer (28-29). Most 
important goal of palliative care is improving the quality of 
life through control of serious symptoms. and attention to 
the patients psychological, social and spiritual needs. Thus 
in care practice quality of life assessment is one or the most 
important outcome measure in this stage of disease course. 
Patient satisfaction and preference studies are added as well. 
Often the use of proxy opinions seems to be justified because 
of cognitive problems in end stage cancer. The decision 
power usually lies with the professionals. For this reason also 
family members or other important persons in the patient's 
life should be requested to act as proxy raters (29). 
According to the reviews most studies use more than one 
quality of life measure. including both general and specific 
instruments and a number of symptom specific measures e.g. 
for pain, depression or emotional well being. Some authors 
argue for the joint implementation of generic and specific 
quality of life assessment tools as a required standard for 
cancer outcomes studies (8-9). Additionally to the listed 
assessments economic evaluation. and cost-effcctiveness 
studies may be performed (8. 32-33). 
The papers list a large number of quality of lile influenc­
ing factors. like age. gender, emotional status, personality, 
behaviour. social support. income. functional performance. 
way of consultation and information provision. and types 
of therapeutic interventions (31. 34). Many of these are 
the basis of items in the different measurement tools. The 
eftects of therapeutic interventions have bcen summarized 
in the previous chaptcr. In rehabilitation the most important 
are those factors tlrnt may be changed. or influenced by the 
rehabilitation process. 
Finally based on the survey we may argue that instead of 
developing new instruments the use of established measures. 
validation and reliability studies on larger samples and 
prospective longitudinal studies would considerably help 
further development. 
Quality of life assessment and 
communication 
Three papers two revicws and a randomised controlled tria!) 
also deal with the importance of quality of lifc assessment as 
communication tool in the therapeutic process (27. 31. 35). 
On one side the application of quality of lite profiles may 
help patients express concerns otherwise reluctant to men­
tion. This knowledge may help members of the health-care 
team in providing more adequate services. More importantly 
this knowledge may also facilitate the discussion with the 
patients. by the communication their better involvement 
into the planning process of therapy and rchabilitation. at 
the same tirne decreasing their anxiety. depression and psy­
chological distress. The combination of these cffects may 
improve the outcomes. Our own experience also suggests 
that involvement of patients into positive planning or the 
future may considerably help improving their outcomes. 
Finally it is worth to mention that Yelikova et al in a longi­
tudinal randomized controlled tria! compared the use of a 
lil 

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cancer specific quality of life measure EORTC-QLQ-C30) 
and feed-back of results to the physicians formerly trained 
for the use of this information at their encounters with their 
patients, the simple use of the measure but no feed-back 
attention group), and finally no quality of life assessment 
in the third control) group (35). Patients in the intervention 
and in the attention group had significantly higher qual­
ity of life p=.006 and p=.01 respectively) than the control 
group. Also a positive effect on emotional well-being was 
associated with feed back of quality of life data without 
prolonging the consultations. Instrument completion alone 
attention group) did not have similar effect. These observa­
tions are also in concordance with ours. In a cross sectional 
study at the National Institute for Medica! Rehabilitation 
Budapest, performing quality of life assessments were 
associated with higher pacient satisfaction, although not of 
cancer patients. 
CONCLUSIONS 
Based on the review of papers and own experience the fol­
lowing conclusions can be drawn: 
•
The richness of quality of life assessment instruments
used at cancer patients creates difficulties in comparing
studies and outcomes.
•
Direct measures of quality of life are preferred compared
to indirect assessment.
•
Non significant quality of life impro vements have been
observed following interventions in most studies. The
nature of malignant diseases and their aggressive therapy
may explain this observation.
•
Because of the above listed conclusion prospective lon­
gitudinal quality of life studies are needed.
•
Beside cancer specific quality of life measures generic
ones should be used as well.
•
If due to cognitive or communication problems the
information of proxies is needed the proxies should be
selected and the outcomes interpreted with great care.
•
Last but not least, quality of life assessment may facilitate
the communication between patients and professionals
and through this effect may also improve the outcomes
and the patients' quality of life.
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Appendix 1. Topics not items) of the two most frequently used cancer specific quality of life assessment 
instruments. Source: Fayers PM. Machin D. Quality of life assessment, analysis and interpretation. Chichester, 
Wiley & Sons, 2000. pp. 358-363.) 
European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire EORTC QLQ-C30) 
For permission to use contact: Quality of Life Unit, EORTC Data Centre, Avenue E. Mounier 83-B 11, 1200 Brussels, 
Belgium.) 
strenuous activities 
walking long distance 
short walk outside 
confined to bed or chair 
independence in ADL 
work and other daily activities 
hobbies, leisure tirne activities 
shortness of breath 
pain 
need to rest 
sleeping 
weakness 
appetite 
nausea 
vomiting 
constipation 
diarrhea 
tiredness 
pain interfere with ADL 
concentration at e.g. reading 
feeling tense 
worry 
feeling irritated 
depression 
memory 
condition/treatment interfere with family life 
condition/treatment interfere with social activities 
condition/treatment causing financial diffi culties 
rating overall health 
rating overall quality of life 
Functional As sessment of Cancer Treatment - General Version FACT-G) For permission to use contact: Dr David 
F. Cella, Center on Outcomes, Research & Education, Evanston Northwestern Healthcare, 1000 Central Street, Suite 101.
Evanston, IL 60201, USA)
Physical well-being 
Jack of energy 
nausea 
trouble in meeting needs of family 
pain 
bothering side effects 
feeling iti 
forced to spend tirne in bed 
Social/family well being 
feeling close to friends 
emotional support f
r
om family 
support from friends 
family accepting illness 
satisfaction with communication in family 
feeling close to partner 
satisfaction with sex life 
-
Emotional well-being 
feeling sad 
coping with illness 
losing hope in fighting against illness 
feeling nervous 
worry about dying 
worry of getting worse 
Functional well-being 
ability to work 
work fulfilling 
enjoying life 
acceptance of own illness 
sleeping 
enjoying things done for fun 
overall quality of life