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Medicina (Kaunas) 2006; 42(9) 709

Measurement of quality of life in stroke patients


Daina Kraniukait1, Daiva Rastenyt1, 2
1
Institute of Cardiology, Department of Neurology, Kaunas University of Medicine, Lithuania
2

Key words: quality of life; stroke; measurement.

Summary. The quality of life after stroke and the methods of measuring this aspect of the
disease have been viewed with a growing interest. The measurement has been focused on the
physical, psychological, social, and functional aspects of living and is generally based on the
patients subjective perception of his/her general health and well-being. Seven generic measu-
rement scales and three recently developed stroke-specific scales have been assessed and discussed.
The stroke-specific quality of life measures described in this review are as follows: the Stroke
Adapted Sickness Impact Profile, the Stroke Impact Scale, and the Stroke-Specific Quality of Life
Measure. The various factors leading to a deterioration of the quality of life and influencing the
quality of life scores are discussed and defined. Moreover, the necessity of further research is
stressed.

The assessment of quality of life (QOL) after stroke area of research is how the term should be defined
is becoming common with the recognition that eva- and conceptualized. One of the essential aspects is to
luation of treatment should include quality as well as make a distinction between health-related and non-
quantity of survival (1). The results of treatment are health-related quality of life (9). The starting point
appraised by applying tests that evaluate physical for a number of the health-related definitions was the
limitations and/or functional impairments (26). These well-known World Health Organization (WHO)
tests, however, do not give us a measure of the patients (1948) (10) definition of health as a state of complete
own perception of the mental and emotional effects physical, mental, and social well-being and not merely
of the bodily disabilities. Because of this, there has the absence of disease or infirmity.
been a growing interest in tests that measure the health- The inclusion of well-being in the WHO definition
related QOL of poststroke patients. This is used in has led some researchers to focus too narrowly on
addition to the scales of physical impairments. The self-reported psychological well-being as being the
combined scales are an indication of therapeutic effec- only aspect of QOL importance (11). However, well-
tiveness (7). Measuring QOL mostly comprises func- being has to be seen as the narrower term; it is an
tional, physical, cognitive, psychological, and social important aspect of quality of life (12), but is not the
elements. The results of these measures fairly accu- only aspect that needs to be considered. It is important
rately represent the patients own perception of his/ to specify the range of health-related and non-health-
her functioning and general health. Taking into con- related aspects of quality of life that should also be
sideration the way in which patients view their own included, such that quality of life is not simply
health situation is the most important element of pa- another term for well-being. In addition to the phy-
tient-centered health care. Recording self-reported sical, mental, and social aspects, there is now a recog-
QOL must be integrated element of poststroke nition that spiritual and religious aspects are needed
evaluation and treatment (8). It is, therefore, very im- to be included in health-related quality of life (9, 11,
portant that physicians would increase their acquain- 13), and a range of aspects of the individuals physical
tance with the selecting of trustworthy and pertinent environment needs to be included in non-health-
QOL instruments and be aware of the factors that related quality of life. The term quality of life is
affect the results and the importance of the outcome. now widely used in the literature on the evaluation of
health status and outcome. There are a considerable
General aspects of quality of life number of definitions of the term, but the definition
The phrase quality of life is used in many diffe- that has been proposed by the WHO (1995) (13) is:
rent ways, and one of the major issues that face this An individuals perception of their position in life
Correspondence to D. Kraniukait, Institute of Cardiology, Kaunas University of Medicine, Sukilli 17,
50161 Kaunas, Lithuania. E-mail: daina.kranciukaite@med.kmu.lt
710 Daina Kraniukait, Daiva Rastenyt

in the context of the culture and value systems in which Medical Outcomes Short Form Health Survey
they live and in relation to their goals, expectations, (SF-12)
standards and concerns. It is a broad ranging concept In the middle of the 90s, an abbreviated version of
affected in a complex way by the persons physical the SF-36, the SF-12 (16), was developed. The SF-12
health, psychological state, level of independence, generates the physical and mental component sum-
social relationships, and their relationship to salient mary (PCS and MCS, respectively) scores of the SF-
features of their environment. 36 with considerable accuracy, while imposing mini-
mal burden on respondents. It was demonstrated that
Generic descriptions of quality of life measures PCS and MCS scores of the SF-36 were replicable by
QOL instruments can be divided into generic and the SF-12 (17).
disease-specific scales: generic scales address general Sickness Impact Profile (SIP)
health concepts not specific to any age, disease, or The SIP is a reliable and validated 136-item ins-
treatment (14). The seven most stroke-relevant generic trument grouped into 12 sections or subscales (Tab-
measures are as follows: le 1). Contrary to other QOL scales, the items con-
Medical Outcomes Short Form Health Survey centrate on particular behavior that relates to restric-
(SF-36) tions or recent alterations in functionality instead of
This is an often-used measurement scale which was subjective feelings or perceptiveness (18). Individuals
suggested by the Agency for Health Care Policy and may for instance say yes or no to questions like,
Research in the Poststroke Rehabilitation Clinical I have less desire to talk to my friends and relatives,
Practice Guidelines (15). This instrument is a 36-item rather than to an abstract statement such as, I expe-
questionnaire completed by the patient him/herself. rience a sense of isolation towards my environment.
The items are grouped into eight domains which emb- Total scores are converted to a percentage of the maxi-
race a large range of physical activities and psycho- mum possible impairment from 0% (representing no
social cognition also including the evaluation of ge- impairment) to 100% (representing maximal impair-
neral health status (Table 1). The scores on a scale ment) (8). There is a short version of this scale called
ranges from 0 to 100; a higher score indicates better SA (stroke adapted) SIP 30. A comparative survey
health. conducted by A. van Straten et al. concludes that the

Table 1. Comparison of generic quality of life instruments


(modified from L. K. Saladin (2000) (8))

SF-36 SIP Euroqol NHP


(8 domains) (12 domains) (6 domains) (6 domains)
Emotional health Gregarious interaction, Mood Emotional, social
emotional conduct (distress/despondency)
Bodily performance Mobility, ambulation Mobility Physical
Role-physical, Housekeeping ability, Daily practice
emotional interaction, recreation and pastimes,
social functioning employment
Pain Pain and discomfort Pain
General condition Family and
leisure activities
Vigor/vitality Alertness behavior Energy
Rest and sleep Sleep
Self-care and mobility, Self-maintenance
eating
Communication

SF-36 Medical Outcomes Short-Form Health Survey; SIP Sickness Impact Profile;
NHP Nottingham Health Profile.

Medicina (Kaunas) 2006; 42(9)


Measurement of quality of life in stroke patients 711

SA-SIP30 should be preferred over the SIP136 (19). with the pros and cons of the various instruments.
Euroqol Generic QOL instruments were specifically developed
Euroqol is a measurement scale which has been to be used by a wide range of patient populations. An
developed by the Euroqol group. It was created as a advantage of such scales is therefore the possibility
standardized generic scale used for the evaluation of to compare the relevant effects of differing illnesses
patient health status and has been used for this objec- and interventions on the QOL. Therefore, it is
tive in varying clinical populations. The Euroqol ques- recommended to use a generic scale if the QOL needs
tionnaire consists of only six items (1) and covers six to be compared across a range of illnesses and/or con-
domains (Table 1). The score for each item ranges ditions (8). QOL is mostly assessed by instruments
from 1 to 3, whereby 1 signifies no problems and depending on self-reports. These methods of data col-
3 represents extreme problems. In addition to this lection are not very suitable for patients with cognitive
scale, the Euroqol uses a visual analogue scale from or communicative disorders. One way to avoid this
0 to 100 to furnish a general estimate of health-re- methodological problem is to use so-called proxy ra-
lated QOL, where 0 signifies worst imaginable tings, but the evidence from caregivers reports is
health and 100 best imaginable health. contradictory (25). Because of the danger of signifi-
There are four more generic scales which are used cant distortions in the scores caused by the completion
to evaluate poststroke QOL. None of these have been of the questionnaires by caregivers, using this method
particularly validated (1, 8, 20). should be treated with considerable prudence. Another
Quality of Life Index (QLI) inadequacy of the generic scales is reduced accuracy
The QLI at first was designed to measure the QOL of certain scales at the high and low end. When QOL
in people with chronic diseases such cancer (21), but scores are recorded as very low, there is a so-called
now it has been adjusted for stroke patients (22). The floor effect. The scales are at that level not sensitive
initial version was a questionnaire with 38 questions enough to detect differences among patients with such
grouped into four subsections. For the stroke version low scores although such differences may exist. The-
of the QLI 3, sections were added: communication, refore, these scales do not correctly present the right
self-care, and mobility. Satisfaction and importance scores of this type of patient, and they cannot deter-
are evaluated on a scale from 1 to 6. The total score mine precisely the effect of treatment. A ceiling
ranges from 0 to 30; higher scores indicate better QOL. effect is observed if there are a large number of per-
Reintegration to Normal Living Index (RLNI) sons with a very high score for a specific test. Instru-
This instrument comprises a questionnaire of 11 ments that are affected by this ceiling effect lack the
items which measures patients satisfaction over six necessary sensitivity to distinguish among patients
domains (23). The RLNI determines the overall with the highest scores for specific test. Significant
functional state by recording the patients evaluations floor and/or ceiling effects (Table 2) have been
of his/her capabilities and by objectively assessing reported for the various SF-36 subscales (1, 26). The
the indications of social, psychological, and physical degree of accuracy also varies significantly among
state. As in the case of generic measurement scales, scales. The SIP and NHP use only two response
an overall score and domain-related subscores are groupings whilst the SF-36 has an arrangement of two
obtained where a higher score signifies a higher QOL. and six response groupings depending on the relevant
Nottingham Health Profile (NHP) domain (1). Finally, a foremost criticism is the perti-
The NHP scale is a generic instrument which at nence of generic QOL instruments when applied to
first was designed to measure the perception of health stroke patients. The validity of content refers to the
status in population surveys (24). The NHP question- capacity of a test or scale to pinpoint meaningful and
naire consists of 38 items necessitating a yes or no specific symptoms or problems inside a particular
answer to questions grouped into six subscales (Table population (27). In order to eliminate these problems,
1). The scores for each group range from 0 to 100, the process of improvement and validation of more
where 0 indicates perfect health (8). stroke-specific QOL scales has been started recently.
Using the simpler SF-12 scale instead of the SF-
Advantages and limitations of generic quality 36 scale is of particular consequence for the research
of life measures evaluation of stroke patients. Time and cost savings
To choose the most pertinent QOL instrument for may be realized using a shorter array of questions
clinical use, therapists should familiarize themselves included into a longitudinal questionnaire series, while
Medicina (Kaunas) 2006; 42(9)
712 Daina Kraniukait, Daiva Rastenyt

Table 2. Precision of generic measures used in stroke quality-of-life research


(modified from D. Buck et al. (2000) (1))

No. of response Weighting of


Measure Floor/ceiling effects*
categories numerical values
SF-36 Varies by domain No** Large ceiling effects
(26) reported for some domains
SIP 2 Yes Not reported
Euroqol 3 Yes Not reported
NHP 2 Yes Not reported

SF-36 Medical Outcomes Short-Form Health Survey; SIP Sickness Impact Profile;
NHP Nottingham Health Profile.
* in studies of stroke populations; ** scores of 0100 are generated for each domain.

providing essentially the same prognostic information estimate of individual health and an inability to cal-
as by applying the longer form. The shorter SF-12 culate summary scores when one item is left unans-
questionnaire can substantially reduce the time spent wered (17).
by respondent and interviewer in an administered The selection of the QOL measure must be based
survey. Furthermore, by enabling responses from pa- on its psychometric attributes, which include feasi-
tients with poorer outcomes, a shorter, simpler ins- bility, validity, reliability, and sensitivity to change
trument may provide more power to detect differences (20). The method of collecting data requires some
among groups because larger sample sizes will trade-off between costs and response rates, non-
compensate smaller losses in precision. The total time response bias, and data quality (29).
to complete the SF-12 questionnaire is less than
2 minutes for the majority of individuals (28), while Stroke-specific quality of life measures
the corresponding time to respond to the SF-36 is 10 Although stroke is a major problem, the best me-
to 12 minutes. Average completion times ranged from thod for measuring the outcome of stroke is not clear,
2 to 30 minutes (Table 3). These completion times partly due to the heterogeneity of stroke signs and
are likely to be greater for both instruments in stroke symptoms (7). Three disease-specific QOL measures
patients. The SIP which scores well in the other were recently developed for the use in stroke sur-
respects such as accuracy and social and psychological vivors.
aspects of QOL measurement is much more time The Stroke Adapted Sickness Impact Profile (SA-
demanding (Table 3). Compared with the SF-36, the SIP30)
disadvantages of using the SF-12 include less precise This instrument is an adaptation of the 136-ques-

Table 3. Generic measures used in stroke quality-of-life research: description of acceptability


(modified from D. Buck et al. (2000) (1))
Average Response rates Response rates
Measure No. of items
completion time (of measure)* (of items)*
SF-36 36 510 min 6383% <75% for all items in role-
physical and role-emo-
tional scales
SIP 136 2030 min 8398% Not reported
Euroqol 6 23 min 6380% Not reported
NHP 38 (or 45 if part 510 min 7289% Not reported
II is included)

SF-36 Medical Outcomes Short-Form Health Survey; SIP Sickness Impact Profile;
NHP Nottingham Health Profile.
* in studies of stroke populations.
Medicina (Kaunas) 2006; 42(9)
Measurement of quality of life in stroke patients 713

tion SIP (30). The scale was principally designed to telephone interview, e-mail or ordinary mail transmis-
avoid the great length of the SIP, which was considered sion. Besides these advantages, the SIS and the DSS-
a major disadvantage. The SA-SIP30 is a 30-question QOL scales have an exclusive advantage over generic
instrument with eight subgroups created by elimina- scales and the SA-SIP30. They were developed to deal
ting the most irrelevant questions from the initial test. with the items which are most pertinent to stroke
Although this scale is stroke specific and is much patients and are likely to become the more suitable
shorter than the original generic SIP, it will be neces- measurement of poststroke QOL also because of the
sary to further evaluate the dependability, sensitivity, greater ability to pinpoint significant changes. The
and soundness of the SA-SIP30 poststroke scale. SIS has some extra and essential advantages when
The Stroke Impact Scale (SIS) compared with the other two stroke-specific scales.
This scale is a stroke-specific instrument for mea- The most noteworthy advantage is the link to a web-
suring QOL. It is version 2.0 of the SIS (31). The site (8). A database on the site enables medical person-
main difference from the SA-SIP30 scale is that it is nel to enter and gather data resulting in a summary
not merely a simplified version of the generic scale, report for every patient. The stroke-specific scales have,
but that it was designed especially for stroke survivors. however, also some disadvantages which should be
The SIS has 8 domains and 64 items which are the watched carefully. Most of the weakness stems from
most appropriate for the evaluation of poststroke QOL. the fact that these scales are still relatively new and
The questionnaire asks the patient to rate his/her own there are still not enough data available from clinical
awareness of his/her recovery progress on an analogue trials. A specific problem with the use of the SS-QOL
is its complexity. There are three response set possi-
graphical scale. There are four physical domains being
bilities available for answering the survey items, and
hand function, strength, mobility, and Daily Life Acti-
items within the same domains use varying response
vity/Instrumental Activity of Daily Life. When added
sets. The possible misconstruction about the correct
together, these four domains represent one physical
response set choice may be lessened if the format of
domain score. The other domains are scored indivi-
the forms is changed to improve the clearness. Moreo-
dually (8). The domain score ranges from 0 to 100.
ver, it seems that the descriptions of some of the items
The SIS score is a reliable and stable instrument and
do not correspond with the response sets. Further
has been proved to have a good test-retest consistency. clinical trials of the SS-QOL with lager samples are
Research shows that most SIS domains sensitively being conducted (27), and some of these weaknesses
reflect the progress of recovery. will likely be eliminated as the development progresses.
The Stroke Specific Quality of Life Measure (SS-
QOL) The use of proxies
This instrument is the latest of the tools for post- Several studies have shown that many stroke sur-
stroke-specific QOL scales (32). Interviews with stro- vivors experience a decline in their QOL in terms of
ke patients formed the basis for 49-item and 12-domain impaired physical, functional, psychological, and
questionnaire. All questions were reviewed by specia- social health (33, 34). QOL is most often assessed by
lists in physical medicine, rehabilitation, and neuro- means of either structured interviews or written ques-
logy and thereafter again by different stroke patients. tionnaires. However, it has been recognized that these
Further questions were checked and revisions were methods of data collection are not always suitable for
made using the data from poststroke persons after one studies of stroke survivors (35). Given the frequency
to three months. However, further studies on the relia- of serious cognitive, speech, and language disorders,
bility, consistency, and sensitivity of the SS-QOL are many patients are not able to communicate effectively
needed involving larger patients samples. or to understand what they are being asked. The
inability of a highly relevant subgroup of patients to
Advantages and limitations of stroke-specific participate in such studies may yield results that cannot
quality of life measures be generalized to the total patient population of interest
The stroke-specific QOL instruments, as the (25). Research has been conducted on the differences
generic scales, have similar advantages in many ways. of the perception of QOL by the patients themselves
As in the case of generic scales, these stroke-specific and proxies such as relatives or medical staff. It was
tools are self-report questionnaires which can be concluded that patients perceived their QOL better
completed within 10 to 15 minutes using varying tech- than the same circumstances were perceived by pro-
niques such as self-completion, personal interview, xies (36).

Medicina (Kaunas) 2006; 42(9)


714 Daina Kraniukait, Daiva Rastenyt

Determinants of poststroke quality of life search should be conducted to establish the impact of
Several studies have shown that by far the largest communication disorders on poststroke QOL suffi-
part of the patients experience and report a decline in ciently. A decrease in the independence of function
QOL after stroke (3741), and this even applies to has been linked to a declined QOL in most studies
persons who have suffered only a minor stroke (37, (3739, 43, 44). It is, however, very important to note
38, 42). There are a number of factors which seem to that stroke survivors, even if they are independent in
be contributing towards a decline in QOL of stroke their daily activities, report a decline in their QOL
patients. Advanced age (34, 39, 41), the severity of (37). This seems to indicate that functional measure-
motor impairment or paralysis (40, 43), lack of per- ments only are not sufficient for determining stroke
ceived social supports (44), inability to return to work results. It is necessary too, in addition to the impartial
(45), supratentorial lesion locations (46), impaired assessment of physical impairments, to measure the
cognition, and the presence of comorbid health prob- QOL to provide a more accurate and complete picture
lems (43) have been associated with a decline in QOL of the poststroke level of disability. The existence of
and should be taken into account when making an depression has a strong correlation with the prognosis
analysis of stroke results. Several authors have repor- of declined QOL after stroke (38, 40, 44, 45). From
ted a strong association between physical disability, 23 to 41% of stroke patients feel an immediate incep-
dependency in activities of daily living and QOL (34, tion of depression in the period of the few months
43, 47). Dependency in activities of daily living has after the event of the stroke (51). QOL is not a fixed
been shown to be associated with physical functioning measure, but it may change in the course of time as
and the general health domains of QOL (22, 47), but new as the patient has to deal with new situations.
not to predict psychological and socio-economic The effect of the after-stroke time factor on QOL is
aspects of QOL (22). The correlation between age, still contentious. A decline in the QOL over a 6- to
sex and QOL has remained obscure. C. S. Anderson 24-month period after the stroke event has been docu-
et al. showed that women had a better stroke outcome mented (41). The aspects of QOL which suffered the
in terms of social functioning and mental health (47), strongest deterioration included dealing with life
but most authors report QOL either to be independent events (50), private relationships, and self-care neces-
of gender (43) or lower in females (33). Failure to sities but also recreation and housekeeping. Neverthe-
maintain or re-establish social ties, except for those less and in contradiction with these findings, a light
with family members, seems to be an important deter- improvement in the overall QOL during the first 1 to
minant of poor QOL in long-term survivors of stroke 3 years after the stroke event has also been recorded.
(34), whereas high levels of social support have been These findings point to the need for a long-term fol-
shown to be related to a better outcome (48). On the low-up of patients after stroke to achieve a complete
other hand, too much support from the spouse may evaluation of these data (8). A decrease in the QOL
lead to overprotection and understimulation and lead as time progresses may point to an inadequate strategy
to a less favorable outcome (49). To ensure a good for helping patients with their reintegration in the com-
outcome, the support of the family is not enough; the munity and the readjustment of their lives and that
support of society is also needed (33), so that stroke more efforts and means should be applied to improving
victims feel cared for, loved, valued, and esteemed and this facet of after stroke care.
are ready to accept assistance from others if needed.
An aspect that has not been sufficiently investigated Conclusions
is the effect of aphasia. It is an important fact that the The need remains for a patient-centered, psycho-
major part of the studies has excluded patients with metrically robust, stroke-specific quality of life measu-
severe aphasia (37, 40, 44, 50). The results of a few re. Patients should be involved in each stage of instru-
investigations, which studied this correlation, were ment development. Caution is needed in the selection
unconvincing (43), so more investigations and re- of an instrument to measure quality of life after stroke.

Insultu persirgusi pacient gyvenimo kokybs vertinimas

Daina Kraniukait1, Daiva Rastenyt1, 2


Kauno medicinos universiteto 1Kardiologijos institutas, 2Neurologijos klinika

Raktaodiai: gyvenimo kokyb, insultas, vertinimas.

Medicina (Kaunas) 2006; 42(9)


Measurement of quality of life in stroke patients 715

Santrauka. Pastaraisiais metais vis daugiau domimasi tyrimais, skirtais ligoni po insulto su sveikata
susijusiai gyvenimo kokybei, kaip pagrindinei ligos padarini nustatymo priemonei ir gydymo veiksmingumo
rodikliui, vertinti. Gyvenimo kokybs vertinimas paprastai apima fizinius, funkcinius, psichologinius, kognity-
vius ir socialinius gyvenimo veiksnius. Gyvenimo kokyb rodo subjektyv individo sav funkcij ir bendros
sveikatos bkls suvokim. Straipsnyje apvelgiamos septynios bendrosios priemons, naudojamos gyvenimo
kokybei po persirgto insulto tirti, taip pat trys naujai sukurtos gyvenimo kokybs nustatymo priemons, pri-
taikytos insult patyrusiems ligoniams, aptariami j privalumai bei trkumai. Apvelgiamos ios gyvenimo
kokybs vertinimo priemons, pritaikytos insult patyrusiems asmenims: 1) insultui pritaikyta ligos poveikio
anketa; 2) insulto poveikio skal; 3) insultui pritaikytas gyvenimo kokybs vertinimas. Apraomi veiksniai,
lemiantys gyvenimo kokybs pablogjim po persirgto insulto ir galintys turti takos gyvenimo kokybei.
Nurodomas ir tolesni tyrim poreikis.

Adresas susirainti: D. Kraniukait, KMU Kardiologijos institutas, Sukilli 17, 50161 Kaunas
El. patas: daina.kranciukaite@med.kmu.lt

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Received 27 April 2006, accepted 13 September 2006


Straipsnis gautas 2006 04 27, priimtas 2006 09 13

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