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Measuring the consequences of osteoarthritis and joint pain in population-based studiesCan existing health measurement instruments capture levels of participation.

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Arthritis & Rheumatism (Arthritis Care & Research)
Vol. 51, No. 5, October 15, 2004, pp 755–762
DOI 10.1002/art.20703
© 2004, American College of Rheumatology
ORIGINAL ARTICLE
Measuring the Consequences of Osteoarthritis and
Joint Pain in Population-Based Studies: Can
Existing Health Measurement Instruments Capture
Levels of Participation?
R. WILKIE, G. PEAT, E. THOMAS,
AND
P. R. CROFT
Objective. To identify health measurement instruments to investigate levels of participation associated with joint pain
in a population survey questionnaire.
Method. A comprehensive electronic search of the published literature was performed to identify potential instruments
that could measure participation. All items from identified instruments were assessed for the ability to measure
participation by 2 experienced and 2 inexperienced assessors. Agreement was determined in terms of actual agreement
(%) and agreement beyond chance (␬).
Results. Twenty-seven instruments (912 items) were identified. Agreement between the experienced assessors occurred
in 86% of items (␬ ⴝ 0.70, 95% confidence interval [95% CI] 0.65– 0.75) and between the inexperienced assessors in 72%
(␬ ⴝ 0.40, 95% CI 0.34 – 0.46). The greatest proportion of participation items in one instrument was 82%.
Conclusion. None of the identified instruments consisted entirely of participation items. The concept of participation and
its translation into measurement for use in the general population is likely to need further development.
KEY WORDS. Participation; Population survey; Joint pain; Health measurement instruments; International Classification
of Functioning, Disability and Health.
INTRODUCTION
Osteoarthritis (OA) affects an estimated 25% of the general
population aged 55 years and older (1). It is one of the most
common chronic health conditions in this age group and,
in light of projected demographic trends, the total number
of people with the disease is likely to increase (2). An
important question is how to measure the impact of OA on
individuals and society.
Population-based epidemiologic studies of OA have
consistently highlighted discrepancies between radiographic evidence of joint pathology on the one hand and
This research is part of a study investigating the natural
history of joint pain that is supported by a Programme Grant
from the Medical Research Council.
R. Wilkie, BSc, G. Peat, BSc, MSc, PhD, E. Thomas, BSc,
MSc, PhD, P. R. Croft, BA, MBChB, MRCGP, MSc, MD:
Primary Care Sciences Research Centre, Keele University,
United Kingdom.
Address correspondence to R. Wilkie, Primary Care Sciences Research Centre, Keele University, Keele, Staffordshire, United Kingdom ST5 5BG. E-mail: r.wilkie@
keele.ac.uk.
Submitted for publication March 3, 2003; accepted in
revised form March 1, 2004.
patient reports of pain severity and levels of disability on
the other (3–5). Such discordance has been reported in
other conditions as well (6 – 8). It suggests that the level of
suffering and the impact on everyday life among individuals with joint pain and OA may be highly variable, even
when the severity of the underlying disease pathology is
comparable.
The recently revised International Classification of Impairment, Disability, and Handicap (ICIDH)—now referred
to as the International Classification of Functioning, Disability and Health (ICF) (9)— offers a useful framework
with which to describe the various consequences of OA.
The ICF classifies functioning at 3 distinct levels: anatomic/physiologic (body function), individual person (activities), and societal (participation). Abnormal functioning at
the 3 levels is described, respectively, as impairment (e.g.,
pain, stiffness), activity limitation (e.g., difficulty walking
100 yards), and participation restriction (e.g., difficulty
looking after others). They broadly correspond to the older
typology of impairment, disability, and handicap. A range
of contextual factors in an individual’s life, both personal
and environmental, may act upon function at each level
and modify relationships between these different levels
(please refer to Appendix for definitions of terms).
755
756
Previous epidemiologic studies of OA have investigated
the prevalence of impairment (e.g., radiographic joint
space narrowing and osteophytes). However, there is increasing interest in the societal and personal consequences
of OA (10), accompanied by a recognition that these cannot be inferred from levels of impairment or activity limitation alone (11). For example, Heberdens nodes may not
affect functional abilities of the hand, but may result in
social isolation due to feelings of inadequacy resulting
from observable deformity. Hence, directly measuring levels of participation and participation restriction is an important step for epidemiologic research. However, the extent to which this has been satisfied in previous studies is
unclear. The ICF framework is relatively new and postdates many of the epidemiologic studies in this field. Measurement of disability has been a feature of some studies
(12–16) but coverage of participation restriction by the
instruments used is uncertain.
As a preliminary step to investigating the prevalence,
patterns, and determinants of participation restriction in
population-based studies of joint pain and OA, we undertook a review of current self-report health instruments
potentially relevant to the measurement of participation
restriction. However, we wanted to identify instruments
that could be completed by all older adults, not only those
with joint pain. Our aims therefore were to 1) identify
health measurement instruments that might include some
measurement of participation (or participation restriction)
and could be applied in a population survey; 2) reliably
determine the proportion of items within these health
measurement instruments that captured some aspect of
participation (or participation restriction) to indicate the
ability of instruments and their scores to exclusively represent participation; and 3) ascertain whether different
observers with varying levels of survey experience and
knowledge of the ICF framework could consistently identify participation items in these instruments.
METHODS
The study was conducted in 4 phases and a standardized
definition of participation was presented to the assessors
at the start. The first phase was a comprehensive search of
the published literature to identify instruments that might
contain items measuring participation. In the second
phase, criteria were applied to the instruments identified
in phase 1 to exclude those that could not be applied in a
self-completion population questionnaire survey and did
not contain any items that measured participation. In the
third phase, all items in the remaining instruments were
independently assessed for their ability to measure participation by 2 assessors who were used to working with the
ICF concepts (experienced) and 2 assessors who were new
to the ideas (inexperienced). The assessors used a standardized definition of participation based on World Health
Organization (WHO) literature. Agreement within the experienced assessor group, within the inexperienced assessor group, and between the groups was analyzed in phase
4.
Wilkie et al
Standardization of participation definition. Before the
study was undertaken, assessors read specific WHO literature (Appendix A; Taxonomic and terminological issues
from the ICIDH-2 pre-final draft: definitions of activities and
participation. Available at URL: www.who.int/classification/
icf/intros/ICF-Eng-Intro.pdf) to establish a consistent approach to and knowledge of the participation concept. They
were presented with the WHO definition of participation,
which is “an individual’s involvement in life situations in
relation to health conditions, body functions and structure,
activities and contextual factors” (9). An item was considered
as having the ability to measure participation if it met 2
criteria: It must obtain information relating to an action, task,
or life situation and the action, task, or life situation must
occur in relation to contextual factors.
The assessors were also provided with examples of participation items from the ICF domains for the measurement of activities and participation. Of the 9 domains
described in the ICF, 3 (learning and applying knowledge,
general tasks and demands, and communication) were
deemed to capture activities and not participation. In 2
domains (mobility and self care), some subdomains were
specified as capturing activities and some as capturing
participation. There were 4 domains (domestic life; interpersonal interactions and relationships; major life areas,
e.g., work; and community, social, and civic life) deemed
to measure participation (Table 1). This structuring
matched 1 of 4 methods, proposed by the WHO, for applying the domains to capture participation (9).
Phase 1: Search strategy and identification of instruments. A comprehensive search strategy was conducted
by a single observer (RW). Search criteria were devised to
obtain instruments containing items that might measure
levels of participation in people with joint pain. The first
search was restricted to reviews of health measurement
instruments. The review articles obtained did not contain
instruments developed after the year 2000. Therefore, a
second search was undertaken of individual peer-reviewed articles to find instruments developed after 1997,
together with a hand search of references in all the obtained literature for additional instruments.
Both searches were performed with the following key
words (MeSH headings and text words): joint pain, outcome measures, disability, handicap, participation, quality of life, musculoskeletal, arthritis, work related pain,
and epidemiology (plus review in the first search) applied
individually and in combination. Publications were
sought in the English language, and retrieved by an online
electronic search of 12 databases (BIDS, Zetoc, Index to
thesis, CHID Online, Cochrane database, WebMedlit,
CINAHL, Medline, Embase, Bandolier, Institute for Scientific Information Proceedings, and PsycINFO).
Instruments were identified from the searches if their
reported design was 1) a generic health or quality of life
measure; or 2) to measure the societal consequences of
health conditions (whether generic or condition specific),
such as handicap instruments; or 3) to measure the consequences of musculoskeletal conditions, excluding those
relating to specific anatomic sites (e.g., low back, knee).
Capturing Levels of Participation
757
Table 1. Defined activities and participation domains, with partial overlap*
Domains and subdomains designated by a single observer to capture activities or
participation
ICF domains for the
measurement of activities
and participation
Activity domains—all items
capture activities
Overlapping domains—Items
within domains are
specified as measuring
activities or participation
Activity domains
1.
2.
3.
4.
Learning and applying knowledge
General tasks and demands
Communication
Mobility
4.10–4.19 Changing and maintaining body
position
4.30–4.49 Carrying, moving, and handling
objects
4.50 Walking
5. Self-care
5.50 Eating
5.60 Drinking
Participation—all items
capture participation
Participation domains
4. Mobility
4.2 Transferring oneself
4.55–4.69 Moving around
4.70–4.89 Moving around using
equipment
5. Self-care
5.10 Washing oneself
5.20 Caring for body parts
5.30 Toileting
5.40 Dressing
5.70 Looking after one’s health
6. Domestic life
7. Interpersonal interactions
8. Major life areas
9. Community, social, and civic
life
* Please note these domains have been constructed and presented by the World Health Organization (9). This interpretation and structure of domains
has been determined by a single observer and not the World Health Organization. ICF ⫽ International Classification of Functioning, Disability and
Health.
Phase 2: Selection of instruments. A single observer
(RW) reviewed all identified instruments and excluded
from further evaluation, those that 1) were not designed to
be self completed by the study participants; or 2) consisted
entirely of items that could not capture participation (e.g.,
“How many relatives do you have?” “Have you had knee
pain in the last month?”).
Phase 3: Rating of all items by experienced and inexperienced assessors. To determine the proportion of items
within the selected health measurement instruments that
might measure participation, 2 assessors (A and B) independently rated, separately and blind to the title of the
instrument, each item from the selected instruments for its
ability to capture participation. These assessors were
deemed to be experienced in that they had been working
on the development of a population survey based on the
ICF framework and had gained an in-depth knowledge of
the participation concept.
To ascertain whether different observers with varying
levels of knowledge of the ICF framework and the participation concept could consistently identify measures of
participation, an additional 2 assessors (C and D) rated
each of the items in the selected questionnaires for their
ability to measure participation. They again worked separately and blind to the title of the instrument. Assessor C
was a health survey researcher with a nominal amount of
knowledge of the ICF who had never applied the concept
in studies. Assessor D was a clinical trials coordinator who
had no previous knowledge of the ICF.
When rating each item, assessors used a 3-category
scale: Yes, item captures participation information; unsure
if it does; and no, it does not.
Phase 4: Statistical analysis of agreement between assessors. Agreement in rating items was determined separately for experienced (A and B) and inexperienced (C and
D) assessors. Agreement was assessed for each item individually and for each instrument as a whole, by actual
agreement (%; proportion of all items assessed where there
was agreement). Agreement for all items was assessed by
actual agreement and by agreement beyond chance (␬).
Levels of agreement were compared between experienced
and inexperienced pairs using actual agreement (%) and
by comparing their respective kappas using a chi-square
test (17).
RESULTS
Potential instruments. The search for reviews produced
a total of 3 books, 3 book chapters, and 16 peer-reviewed
articles, highlighting 72 instruments. The search for instruments published after 1997 and a hand search of obtained literature highlighted an additional 3, resulting in a
total of 75 instruments that might contain items measuring
participation.
Selection of instruments. Forty-eight instruments were
removed because they had not been designed to be self
administered or did not contain any items relating to actions, tasks, or life situations. Of the remaining 27 instru-
758
Wilkie et al
Table 2. Agreement on individual items within the 2 pairs of observers (experienced and inexperienced)*
Agreed
Participation
Nonparticipation
Disagreed
Health measurement instrument
(reference)
Inclusion
criteria
Total
number
of items
30-item screening scale (18)
World Health Organization Quality
of Life-100 (19)
Functional Limitations Profile (20)
Self Care Assessment Schedule (21)
Functional Status Questionnaire (22)
Functional Assessment Screening
Questionnaire (23)
Self Evaluation of Life Function (24)
The Lambeth Disability Screening
Questionnaire (25)
European Quality of Life Scale (26)
Office of Population Census and
Surveys Postal Screening
Questionnaire—1985 (27)
Dartmouth COOP Charts (28)
Duke Health Profile (29)
Nottingham Health Profile (30)
The McMaster Health Index (31)
The Quality of Life Index (32)
Life Satisfaction Rating Scales (33)
Medical Outcomes Study ShortForm 36 (15)
Disease Repercussions Profile (34)
Craig Handicap Assessment and
Reporting Technique (35)
New Handicap Scale (36)
Reintegration to Normal Living (37)
Impact on Participation and
Autonomy (38)
London Handicap Scale (39)
Health Assessment Questionnaire
(13)
Arthritis Impact and Measurement
Scale (40)
McMaster-Toronto Arthritis and
Rheumatism Questionnaire (41)
Arthritis Helplessness Index (42)
Totals
a
a
30
100
3 (10)
18 (18)
1 (3)
5 (5)
23 (72)
72 (72)
19 (63)
75 (75)
4 (13)
10 (10)
10 (33)
20 (20)
a
a
a
a
136
10
34
15
35 (26)
3 (30)
15 (44)
6 (40)
10 (7)
0 (0)
11 (32)
2 (13)
80 (59)
3 (30)
12 (35)
7 (47)
72 (53)
5 (50)
15 (44)
8 (53)
21 (15)
4 (40)
7 (21)
2 (13)
54 (40)
5 (50)
8 (24)
5 (33)
a
a
54
22
6 (11)
3 (14)
6 (11)
14 (64)
40 (74)
11 (50)
37 (69)
0 (0)
8 (15)
8 (36)
11 (20)
8 (36)
a
a
5
37
1 (20)
1 (3)
1 (20)
0 (0)
3 (60)
31 (84)
2 (40)
29 (78)
1 (20)
5 (14)
2 (40)
8 (22)
a
a
a
a
a
a
a
9
17
45
74
5
32
36
2 (22)
2 (12)
7 (16)
9 (12)
2 (40)
0 (0)
10 (28)
0 (0)
2 (12)
8 (18)
4 (5)
1 (20)
0 (0)
2 (6)
7 (78)
12 (71)
37 (82)
52 (70)
2 (40)
30 (94)
24 (67)
6 (67)
14 (82)
33 (73)
50 (68)
2 (40)
31 (97)
24 (67)
0 (0)
3 (18)
1 (2)
13 (18)
1 (20)
2 (6)
2 (6)
3 (33)
1 (6)
4 (9)
20 (27)
2 (40)
1 (3)
10 (28)
b
b
6
27
1 (17)
14 (52)
0 (0)
6 (22)
2 (33)
4 (15)
2 (33)
3 (11)
3 (50)
9 (33)
4 (67)
18 (67)
b
b
b
11
11
23
6 (55)
9 (82)
15 (65)
6 (55)
8 (73)
17 (74)
4 (36)
0 (0)
0 (0)
0 (0)
2 (18)
2 (9)
1 (9)
2 (18)
8 (35)
5 (45)
1 (9)
4 (17)
b
c
6
20
3 (50)
2 (10)
3 (50)
1 (5)
1 (17)
18 (90)
1 (17)
13 (65)
2 (33)
0 (0)
2 (33)
6 (30)
c
100
25 (25)
22 (22)
69 (69)
56 (56)
6 (6)
22 (22)
c
32
3 (9)
2 (6)
25 (78)
0 (0)
4 (13)
30 (94)
c
15
912
0 (0)
201 (22)
0 (0)
132 (14)
0 (0)
127 (14)
0 (0)
264 (29)
A vs B
no. (%)
C vs D
no. (%)
A vs B
no. (%)
C vs D
no. (%)
A vs B
no. (%)
C vs D
no. (%)
15 (100)
15 (100)
584 (64)
516 (57)
* vs ⫽ versus; a ⫽ the instrument was designed as generic health quality of life measure; COOP ⫽ Cooperative Information Project; b ⫽ the instrument
was designed to capture the societal consequences of health conditions; c ⫽ the instrument was designed to capture the consequences of musculoskeletal conditions
ments, 17 (15,17–32) were designed as generic health or
quality-of-life measures (criterion 1), 6 (33–38) were designed to measure societal consequences of health conditions (criterion 2), and 4 (13,39 – 41) were designed to
measure the consequences of musculoskeletal conditions
(criterion 3; Table 2). These 27 instruments contained a
varying number of items (range 5–136) providing a total of
912 items for rating.
Agreement by 2 experienced assessors. Of the 912
items rated, the number of items considered by each assessor (A and B) to be measuring participation was 215
(24%) and 286 (31%), respectively (Table 3). Complete
agreement between assessors occurred for 785 (86%) of the
items rated (201 deemed to capture participation, 584
deemed not to, and none where both assessors were unsure). This level of agreement gave a ␬ of 0.70 (95% confidence interval [95% CI] 0.65– 0.75).
The proportion of items for which there was complete
agreement between assessors ranged from 50% (Disease
Repercussions Profile) to 100% (Arthritis Helplessness Index, Health Assessment Questionnaire, Dartmouth Cooperative Information Project Charts; Table 2]. The highest
proportions of agreed participation items were found in
instruments designed to capture societal consequences of
health conditions. In 5 of these instruments, 50% or more
Capturing Levels of Participation
759
Table 3. Rating of all items into 3 categories by the 4
assessors
Participation
Unsure
Nonparticipation
No. of items No. of items
No. of items
Assessor (% of items) (% of items)
(% of items)
A
B
C
D
286 (31)
215 (24)
272 (30)
187 (21)
1 (0)
75 (8)
72 (8)
42 (5)
625 (69)
622 (68)
568 (62)
683 (75)
of the items were agreed to be measuring participation: the
Reintegration to Normal Living Index (82%), the Impact on
Participation and Autonomy Questionnaire (65%), the
New Handicap Scale (55%), the Craig Handicap Assessment and Reporting Technique (52%) and the London
Handicap Scale (50%). The Disease Repercussions Profile,
also designed to capture societal consequences, only contained 1 agreed item out of 6 rated that measured participation.
Generic health instruments tended to contain a smaller
proportion of agreed participation items (i.e., 10 items
[28%] from the Medical Outcomes Study Short Form 36,
and 35 items [26%] from the Functional Limitations Profile). Of the instruments designed to capture the consequences of musculoskeletal conditions, the Arthritis Impact Measurement Scale (version 2) contained the greatest
proportion (25%) of instrument items agreed as measuring
participation.
Agreement between 2 inexperienced assessors. The
number of items considered by each assessor (C and D) to
be measuring participation was 272 (30%) and 187 (21%),
respectively (Table 3). Complete agreement between assessors occurred in 653 (72%) of all items (132 deemed to
capture participation, 513 deemed not to, 8 items both
assessors unsure). This gave a ␬ of 0.40 (95% CI 0.34 –
0.46). The agreement within instruments ranged from 6%
(McMaster-Toronto Arthritis Patient Function Preference
Questionnaire) to 100% (Arthritis Helplessness Index).
The pattern of agreement was similar to the experienced
assessors. Five of the 6 instruments designed to capture
societal functioning contained 50% or more items agreed
by the inexperienced assessors as measuring participation:
the Impact on Participation and Autonomy questionnaire
(74%), the Reintegration to Normal Living Index (73%),
the New Handicap Scale (55%), and the London Handicap
Scale (50%). The Disease Repercussions Profile contained
no items agreed to measure participation. In contrast to the
experienced assessors, the inexperienced assessors agreed
that ⬎50% of the Lambeth Disability Screening Questionnaire (64%) measured participation.
Agreement between the experienced and inexperienced
assessors. Complete agreement between the experienced
and the inexperienced assessors occurred in 556 (61%) of
the items. There was agreement that 97 items measured
participation and that 459 did not (Table 4). Of the 201
items considered by both of the experienced assessors to
measure participation, there were 104 items about which
one or both of the inexperienced assessors disagreed. Of
584 items considered by both experienced assessors not to
measure participation, there were 125 items about which
one or both of the inexperienced assessors disagreed.
Kappa scores for agreement beyond chance within experienced and inexperienced pairs were significantly different
from each other (P ⬍ 0.001).
DISCUSSION
We have reasoned that measuring participation in population-based studies is important for describing the personal and social consequences of joint pain in older adults.
In this study, we sought to determine the extent to which
existing health measurement instruments might be used in
a population survey to measure levels of participation
associated with joint pain. We identified a number of
instruments that, by design, had the potential to be applied
in this way. We rated individual items to determine the
proportion within each instrument that captured participation and used this to indicate the extent to which instruments and their scale scores exclusively represent participation. Our findings demonstrate that participation
coverage within these measures is variable, and there were
no instruments that consisted entirely of participation
items. Instruments with high proportions of relevant items
may give reasonable estimates of participation frequency.
However, these instruments were not designed to capture
participation and contain items that do not measure participation. The removal of items that do not capture participation may affect the validity of these instruments, and
further validation studies would be required prior to any
application as participation measures in the population.
Instruments designed to capture societal consequences,
consistent with the handicap concept, contained the greatest proportion of participation items. This was expected,
Table 4. Agreement between observers, experienced compared with inexperienced
C versus D “inexperienced”
A versus B “experienced”
Agreed participation
Agreed not participation
Disagreed
Totals
Agreed
participation
Agreed not
participation
Disagreed
Totals
97
7
28
132
14
459
43
516
90
118
56
264
201
584
127
912
760
as the conceptual models of handicap and participation
are similar. The conceptual basis is important to consider
when selecting an instrument because the underlying theory is shaping the measurement (43). Instruments designed to measure generic health status, quality of life, or
the consequences of musculoskeletal conditions contained
a smaller proportion of participation items. These instruments were not designed specifically to reflect the conceptual models of handicap or participation, and their ability
to measure them has been questioned (44,45).
The Reintegration to Normal Living Index contained the
greatest proportion of participation items (9 of 11). It was
designed as a clinical tool to measure levels of global
function and has been applied in survey questionnaires
(37,46). The second highest proportion was in the Impact
on Participation and Autonomy (15 of 23), designed as a
handicap questionnaire (38). Both questionnaires contained items that were not rated as participation items.
This may reflect differences between the concepts of participation and handicap. Measurement of handicap has
proven challenging, with the small number of instruments
and lack of uniformity between them suggesting the concept is underdeveloped (34,45). It remains to be seen if
similar problems occur with participation.
Our findings were based on an analysis of instruments
that might contain participation items. These were identified by a comprehensive and reproducible search of published literature and application of standard criteria to
include only those that could be applied in population
surveys to measure participation in relation to joint pain.
We know of no other instruments for inclusion. Those
such as the Western Ontario McMaster Universities Osteoarthritis Index (47), the Roland and Morris Low Back
Questionnaire (48), and the Disabilities of the Arm, Shoulder and Hand outcome measure (49) were not included
because they were designed to capture consequences of
site-specific conditions. The WHO Disability Assessment
Schedule (50) was published after our searches were performed. Other instruments with participation items (e.g.,
Assessment of Life Habits [51]) were not designed to be
self completed.
In the absence of a gold standard, we used agreement
between the experienced assessors to determine the proportion of items within each instrument that captured
participation. There are no other studies with which to
compare this level of agreement. However, the level of
agreement beyond chance for the experienced assessors
was significantly higher than for the inexperienced assessors. Intra-assessor variation was not assessed. We cannot
therefore conclude whether the disagreement within the
inexperienced pair or within the experienced pair was
reflecting general inconsistencies or systematic differences. However, agreement beyond chance between the
inexperienced assessors was poor compared with that
achieved by the experienced pair. This suggests that
greater experience and familiarization with the WHO concepts lead to a greater common understanding and certainty in the application of these concepts.
To guide the development of the conceptual and measurement models of participation, the main sources of
disagreement were analyzed. Assessors found it difficult to
Wilkie et al
determine if actions, tasks, or life situations occurred at
the level of the individual (i.e., activities) or society (i.e.,
participation), an issue that also affected the application of
the ICIDH (52). For example, with the item “Are you able
to use the telephone?” (Self-Evaluation of Life Function
question 3 [24]), one assessor from each pair assessed the
item as measuring participation, whereas the other assessor did not. Disagreement concerned whether the telephone is a contextual factor that affects the fulfillment of
the task.
There were 97 items that the experienced and the inexperienced observers agreed captured participation, and
these provide examples of participation items likely to be
recognized more straightforwardly by any observer. Such
items did not refer to specific actions, tasks, or life situations, but captured a collection of them, similar to the
domain and subdomain headings presented in the ICF. For
example, “I participate in social activities with family,
friends, and/or business acquaintances as is necessary or
desirable to me” (Reintegration to Normal Living Index
question 7 [37]).
The level of disagreement between the inexperienced
assessors raises questions about the ability of the participation concept to be quickly understood and easily applied. It suggests that WHO literature does not lead to a
consistent understanding of the concept, which may be
why it is measured in a number of ways. The WHO, in
introducing the ICF, does not present a gold standard for
measurement or specific strategies of measurement, but
instead present a base that requires tailoring to meet specific needs (53) as well as a description of the concept (54).
To apply the concept for research purposes, further development and direction is required.
In conclusion, there appear to be no existing health
measurement instruments consisting entirely of participation items. It may be appropriate to develop both the
concept and its translation into measurement to capture
levels of participation in the general population.
ACKNOWLEDGMENTS
The authors acknowledge Dr. Clare Jinks and Jonathan Hill
for their participation in the study.
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APPENDIX A: GLOSSARY OF TERMS
Activities. The execution of tasks or actions by an individual. Negative aspect is activity limitation (formerly “disability” in International Classification of Impairments, Disabilities, and Handicap [ICIDH]), which is defined as
difficulty an individual may have in executing a task, e.g.,
difficulty walking 100 yards.
Body structures. Anatomic parts of the body, such as
organs, limbs, and their components. Negative aspect is
impairment, which is defined as a problem with body
structure, e.g., radiographic joint space narrowing or osteophyte formation.
Body functions. The physiologic functions of body systems (including physiologic functions). Negative aspect is
All terms are defined by the World Health Organization
(9).
Wilkie et al
impairment, which is defined as a problem with body
function, e.g., limited joint range of movement, loss of
muscle strength.
Contextual factors. These represent the complete background to an individual’s life and living. They include 2
components: environmental factors and personal factors,
which may have an impact on the individual with a health
condition and that individual’s health and health-related
status.
Environmental factors. These make up the physical,
social, and attitudinal environment in which people live
and conduct their lives, e.g., poor access to public transport, health care professionals’ attitudes to osteoarthritis
and aging.
Functioning. An umbrella term encompassing all body
functions, activities, and participation. Negative aspect is
disability, which is referred to as impairment, activity
limitation, and participation restriction.
Major life areas. A domain of functioning that covers
the tasks, actions, and life situations required to engage in
education, work, and employment and to conduct economic transactions.
Participation. Involvement in life situations. Negative
aspect is participation restriction (formerly “handicap” in
ICIDH), which is defined as problems an individual may
experience in involvement in life situations, e.g., difficulties obtaining/retaining paid employment.
Personal factors. Refers to the particular background of
an individual’s life and living, and comprise features of
the individual that are not part of a health condition or
health status, e.g., age, sex, coping style.
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