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Pergamon 1995 Elsevier Science Ltd
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Quality of Life:
Its Definition and Measurement
Requests for reprints should be sent to David Felce, Meridian Court, North Road, Cardiff, CF4
3BL, Wales.
This research was conducted under a grant from the Welsh Office/Department of Health. The
authors are grateful to Sharon Landesman-Ramey, Robert Cummins, Roy Brown, John Jacobson,
and Jim Mansell for comments on an earlier draft.
51
52 D. Felce and J. Perry
~ p
ev
r a
s I
n e
a s
For somewhat different reasons, Edgerton (1990) has also equated qual-
ity of life with the conditions under which life is lived. He cautions
against there being objective standards by which one can define a decent
or reasonable quality of life. Satisfaction with life is described as a sepa-
rate and ultimately more important criterion of individual welfare. The
56 D. Felce and J. Perry
Quality of Life
I ] Objective LifeConditions
Physical Wellbeing
Material Wellbeing
Social Wellbeing
r Developmentand Activity
Emotional WeUbeing
x
t
e ,/
t/ 1 "'.'~
r
n /
t
s
SubjectiveFeelingofWeHbeing
a i
ct Satisfaction with:
1 / Physical Wellbeing
/_ . . . . . . . . Material Wellbeing
I Social Wellbeing
n Developmentand Activity
f Emotional Wellbeing
1
n
e
n
c
PersonalValuesandAspirations
e Importance of:
s Physical Wellbeing
Material Wellbeing
Social Wellbeing
Developmentand Activity
Emotional Wellbeing
OverallAssessmentofweilbeing
(Quality of Life)
set o f values. The three elements are shown in dynamic interaction with
each other. Changes in some objective facet of life may change satisfaction
or one's personal values or both. Similarly, changes in values may change
satisfaction and precipitate change in some objective circumstance. In the
same way, a change in a sense of satisfaction may lead to reappraisal of
values and lifestyle.
As well as affecting each other, the three elements are capable of chang-
ing independently as a result of external influences. Such external influ-
Quality of Life 63
ences might include genetic, social, and material inheritance, age and matu-
ration, developmental history, employment, peer influences and reference
points, and other social, economic, and political variables. As the three ele-
ments that define quality of life are all open to external influence, assess-
ment of all three is necessary to any measurement system purporting to
capture quality of life. Knowledge of one set cannot predict another
because the relationships between them may not remain constant.
A Research Agenda
Reaching a valid definition and measurable operationalisation of the qual-
ity of life construct is a central goal. A sustained research effort in three
related areas is required before the field can establish the validity of such a
multidimensional construct. These involve: (a) the refinement of a measure-
ment technology for the assessment of objective aspects of wellbeing, per-
sonal development, and activity; (b) the refinement of a methodology for
gaining subjective appraisals of a broad range of personal satisfaction con-
ceres and of the importance an individual places on various lifestyle issues;
and (e) research on how to establish whether individuals with conspicuous
cognitive limitations and communication deficits consequent on their mental
retardation have sufficient receptive and expressive language to discriminate
what is being asked and to give answers that reflect their feelings accurately.
Allied to this latter effort, for people with mental retardation who clearly
cannot speak for themselves, is the need to investigate whether a valid rep-
resentation of individual concerns and values can be given by anyone other
than the subject, or whether only a restricted assessment of quality of life in
terms of objective indicators is possible.
ability from research on receptive and expressive language and the devel-
opment of adaptive behavior scale norms. What this research implies for
the content and format of questioning will enable the field to determine
what proportion of people can register what complexity of opinion under
what conditions.
Detailed qualitative accounts have been obtained from people with mental
retardation, most of whom were able enough to live largely independently
(Edgerton et al., 1984; Flynn, 1989). Information is also available on respon-
dents in quantitative studies. The abilities of participants in the study by Heal
and Chadsey-Rusch (1985) were described in terms of intelligence quotients
taken from people's files, one group ranging from 22 to 72 with a mean of 47
and the other from 47 to 97 with a mean of 64. These data are unsatisfactory,
but, if taken at face value, they do illustrate the tendency for respondents in
these studies to have moderate or mild mental retardation, or even intelli-
gence outside the range for inclusion. Even so, acquiescence bias, which was
deliberately accounted for within their study, was significantly above zero. It
is not possible to see the extent to which acquiescence was attributable to
those with moderate and severe disabilities within the sample.
The series of studies summarised in Sigelman, Schoenroek et al. (1981)
addressed four questions: (a) to what extent can people with mental retar-
dation respond to questions, regardless of truth or accuracy; (b) how con-
sistent are such answers over time; (c) how valid and free of systematic
bias are such answers; and (d) what types of question optimise responsive-
ness, reliability, and validity? Questions used a variety of yes-no, picture
choice, either-or, verbal multiple choice, and open-ended formats. They
found that some people with severe mental retardation and the great major-
ity of people with profound mental retardation were unable to respond at
all. The proportion of questions that children and adults with severe, mod-
erate, or mild mental retardation answered were, respectively: 46.1% and
58.5%, 84.8% and 78.0%, and 90.9% and 73.5%. Unpredictability of
responsiveness increased with severity of disability. However, higher rates
of responding were obtained among children with severe mental retardation
in a later study (78.7%) by using repetition to facilitate understanding and
by restricting question types to those most likely to be answered (picture
choice and yes-no formats).
Obtaining an answer is a necessary but not sufficient condition of sound
interviewing. The Sigelman group's second and third questions (Sigelman,
Schoertrock et al., 1981) related to consistency and validity of answers.
They found that, for those who could respond, 85.2% of answers were con-
sistent across similar repeated questions requiring yes-no responses, and
71.9% were consistent across repeated three- or four-answer multiple
choice formats. Only 46.2% consistency was found for a four-choice pic-
ture format (smiting or frowning faces) to indicate how respondents felt
68 D. Felce and J. Perry
CONCLUSION
In conclusion, a model of quality of life is proposed that integrates objec-
tive and subjective indicators, collectively reflecting a broad range of life
domains, through an individual ranking of the relative importance of each
domain. This model accommodates both concerns that objective data
should not be interpreted without reference to personal autonomy and pref-
erences and concerns that expressions of satisfaction are themselves rela-
tive to the individual's temperament and the circumstances and experiences
that have shaped their frame of reference. Although in the proposed model
70 D. Felce and J. Perry
individuals may weight certain life conditions as less important than others,
the objective assessment of those life conditions is still a part of the overall
assessment and may be compared to those typically experienced. Consider-
able agreement among writers on this topic in the disability field exists on
bow to categorise life domains relevant to the conceptualisation of qual-
ity of life.
The conceptualisation offered is based on literature concerning the mea-
surement of quality of life in the general population as well as for disability
groups. Cummins (1992b) has argued that one of the characteristics of a
good quality of life measure is that it will enable comparison between
groups of people irrespective of their precise characteristics. In particular,
measures of quality of life for people without disabilities should be equally
applicable to people with disabilities, and vice versa, thus allowing com-
parison of the quality of life of people with disabilities to that of the gener-
al population. The five domains used in this article to categorise the content
areas relevant to quality of life are all of a general nature, and this is desir-
able from the perspective of developing a quality of life measurement sys-
tem with broad utility. However, it would be wise not to assume that such
broad utility follows simply from the seeming general applicability of
items to a wide range of people. Rather, the development of quality of life
measures for people with disabilities should go hand in hand with and par-
allel measures of quality of life for the general population (see Cummins,
1992a, 1992c).
The development of a common approach to quality of life applicable
across societal groups and to the total population is vital if information
regarding one section of society is to be interpreted with confidence.
Problems in inferring what alternative quality of life might be reasonable in
the individual case are compounded by the fact that life conditions and sat-
isfaction with life inevitably vary across individuals in all groups within
society. However, aggregated data for a defined group of interest, com-
pared to the statistical distribution for the population as a whole, can be
used to reflect whether life conditions and satisfaction in various domains
are typical of the general pattern or have a significantly different profile.
Social policy may then respond to conspicuous inequality.
Finally, we have outlined some of the research steps that will contribute
to the proposed multielement approach to the quality of life construct.
Although we agree that continued conceptual and methodological develop-
ment is important, we also recognise that such is the extent of social
inequality, inferior opportunities, and disadvantaged circumstances experi-
enced by people with mental retardation that existing research tools may
very well adequately assess whether success accompanies our efforts to
bring about beneficial change. Perhaps the most important implication of
the current state of conceptua/isation of quality of life is that it sets a broad
Quality of Life 71
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