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Measuring participation according to the International Classification of

Functioning, Disability and Health (ICF)

Article  in  Disability and Rehabilitation · June 2003

DOI: 10.1080/0963828031000137081 · Source: PubMed

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DISABILITY AND REHABILITATION, 2003; VOL. 25, NO.
Measuring participation according to the
International Classification of Functioning,
Disability and Health (ICF)
ROM J. M. PERENBOOM* and ASTRID M. J. CHORUS
Division of Public Health, TNO Prevention and Health, Leiden, The Netherlands
Abstract
Purpose: To report which existing survey instruments assess
participation according to the International Classification of
Functioning, Disability and Health (ICF).
Method: A literature search for relevant survey instruments
was conducted. Subsequently, survey instruments were eval-
uated of which the complete questionnaire, published in the
English language, was obtained. Items on participation were
evaluated according to the ICF, defined as involvement in life
situations, including being autonomous to some extent or
being able to control your own life.
Results and Conclusions: Eleven survey instruments were
identified, of which nine were evaluated on participation. All
of the nine instruments measure participation to some extent.
The two instruments closest to solely involve items on
participation level are the Perceived Handicap Questionnaire
(PHQ) and the London Handicap Scale (LHS). The PHQ is
measuring the perception of participation. In the LHS, the
items are formulated in terms of participation, while the
response categories include all components of the ICF, from
problems in body function to participation. Much more
discussion is needed to be able to get an unambiguous picture
to distinguish between activity and participation.
Introduction
With the publication in 2001 of the revised version of
the ICIDH, now entitled International Classification of
Functioning, Disability and Health (ICF),1 the classifi-
cation has moved away from being a ‘consequence of
disease’ classification (1980 version) to become a
‘components of health’ classification. The concept
‘components of health’ identifies the constituents of
health, whereas the concept of ‘consequences’ focuses
on the impacts of diseases or other health conditions
that may follow as a result. ICF provides a description
* Author for correspondence;
e-mail: rjm.perenboom@pg.tno.nl
Disability and Rehabilitation ISSN 0963–8288 print/ISSN 1464–5165 online # 2003 Taylor & Francis Ltd
http://www.tandf.co.uk/journals
DOI: 10.1080/0963828031000137081
11–12, 577–587
of situations with regard to human functioning and its
restrictions and serves as a framework to organise this
information.
ICF organizes information in two parts. The first part
deals with Functioning and Disability, the second part
covers contextual factors. Components of Functioning
and Disability are divided in a Body component and
an ‘Activity’ and ‘Participation’ component. Activity is
defined as the execution of a task or action by an indivi-
dual and Participation is defined by involvement in a life
situation. For the description of activity and participa-
tion, two qualifiers are available: capacity and perfor-
mance. The capacity qualifier describes an individual’s
ability to execute a task or an action in a uniform or
standard environment, while the performance qualifier
describes what an individual does in his or her current
environment. Components of Contextual factors are
divided into ‘environmental factors’ and ‘personal
factors’. Environmental factors have an impact on all
components of functioning and disability. Personal
factors are not classified in the ICF.
Reduction of disabilities and improvement of partici-
pation for the disabled and chronically ill are important
aims of rehabilitation and of health policy. In the Neth-
erlands, this is especially the case in terms of work parti-
cipation. Monitoring the degree of participation and
restrictions are then of vital importance for those
responsible for this policy field. Monitoring requires
instruments that reflect the domains of participation as
defined in the ICF. However, as the ICF has only
recently been published, no instruments are available,
designed and based on this ICF concept. Idealistically,
existing instruments are based on the terminology and
concepts of the former ICIDH, in this case the handicap
concept. In 1999 Cardol et al. have published an article
on how existing questionnaires assess handicap accord-
ing to the ICIDH.2 They conclude that the existing
 R. J. M. Perenboom and A. M. J. Chorus
handicap questionnaires are not suitable to assess
person-perceived handicaps in all domains.
In this paper, we want to report our view on how
existing survey instruments assess participation and
participation restrictions, as defined in the ICF. In this
article, the performance qualifier is not used as the only
tool to evaluate the instruments. For us, participation
is the involvement in life situations, which includes being
autonomous to some extent or being able to control your
own life, even if one is not actually doing things them-
selves. This means that not only the actual performance
should be the key indicator, but also the fulfilment of
personal goals and societal roles.3 Additionally, the
ICF states that the concept of involvement should be
distinguished from the subjective experience of involve-
ment (the sense of ‘belonging’). However, we think that
the best judge of participation is the respondent himself.
It should be noted that in general population surveys
often questions on participation are included. For
instance, the Netherlands Continuous Life Situation
Survey includes questions on work participation, social
participation and participation in the community. But
from these general surveys one cannot conclude whether
difficulties in participation are related to health
problems or a health condition or whether other factors
cause these problems (financial situation, lack of time or
interest and so forth). These more general questions on
participation are not included in our evaluation.
Methods
To collect survey instruments on participation we
carried out a Medline search, where we used the key
words: handicap, participation, handicapped, instru-
ments, measurement. Although the role of environmen-
tal determinants as barriers or facilitators in
participation is unquestionable, in the ICF these are
considered separately because they have an impact on
Table 1 Survey instruments to measure (domains of) participation
Instrument
1. Craig Handicap Scale and Reporting Technique
2. Perceived Handicap Questionnaire
3. London Handicap Scale
4. Re-integration to Normal Living Index
5. Impact on Participation and Autonomy
6. Nottingham Health Profile
7. Activity Enumeration Index
8. Lubben Social Network Scale
9. WHO Disability assessment schedule 2
10. World Health Organization Quality of Life
11. SF36
578
all components of functioning and disability. Therefore,
in our literature search we did not focus on environmen-
tal factors separately.
Our evaluation of instruments was restricted to gener-
ic instruments. Disease specific instruments are not
included. In total we found 11 generic instruments, that
were labelled to measure one or more domains of parti-
cipation. In table 1 the instruments and their main char-
acteristics are presented. For the purpose of our study,
we made a further restriction that the instruments
should be available in English. If the instruments were
not included in the articles, we contacted the authors
to send us the original questionnaire.
Each item of the collected instruments is evaluated for
its formulation, according to our interpretation of
dimensions: is the item formulated in terms of activities
or formulated in terms of actual or perceived participa-
tion i.e. involvement, autonomy, societal role.
Results
Of the 11 instruments retrieved through our literature
search we succeeded in collecting the original items of
nine questionnaires. We were not able to get hold of
the original items of the remaining two instruments,
the Activity Enumeration Index4 and the Lubben Social
Network Scale.5 So, these two instruments were left out
from our evaluation.
In table 2, we present original items of the nine instru-
ments. Besides, we tried to link the items of the different
instruments to ICF codes on chapter or lower levels. In
this part we will report on the formulation of items of
each instrument separately.
The CHART (Craig Handicap Scale and Reporting
Technique) includes five dimensions (see table 2). The
instrument was normed on the general population and
was validated among patients with various chronic
diseases or injuries.6
Abbreviation References
CHART Whiteneck et al., 1992
PHQ Tate et al., 1994
LHS Harwood et al., 1994
RNL-index Wood-Dauphinee et al., 1988
IPA Cardol et al., 1999; Cardol et al., 200111
NHP Hunt et al., 1980
AEI Yelin et al., 1987
Lubben scale Lubben et al., 1988
WHODAS II www.who.int/icidh/whodas/generalinfo.html
WHOQOL WHO, 1998
SF36 Aaronson et al., 1998
 Measuring participation according to ICF

Table 2 Items of different survey instruments related to ICF-codes

Dimensions Items ICF

1 CHART Physical Independence 1. How many hours in a typical 24-hour day do you have someone Environmental factors: chapter 3
with you to provide assistance? (hours paid/hours unpaid) ‘Support and relationships’
2. Not including any regular care as reported above, how many Environmental factors: chapter 3
hours in a typical month do you occasionally have assistance with ‘Support and relationships’
such things as grocery shopping, laundry, housekeeping, or
infrequent medical needs like catheter changes?
3. Who takes responsibility for instructing and directing your Environmental factors: chapter 3
attendants and/or caregivers? ‘Support and relationships’
Mobility 1. On a typical day how many hours are you out of bed? Activities: d410
2. In a typical week, how many days do you get out of your house Participation: d460
and go somewhere?
3. In the last year, how many nights have you spent away from your Participation: d4601-d4602
home (excluding hospitalisations?) (none,1 – 2, 3 – 4, 5 or more)
4. Can you enter and exit your home without any assistance from Activities: d4602
someone? (yes/no)
5. In your home, do you have independent access to your sleeping Activities/Participation: d4600,:
area, kitchen, bathroom, telephone, and TV (or radio)? (yes/no) Environmental factors: chapter 1
‘Products and technology’
6. Can you use your transportation independently? (yes/no) Activities/Participation: d470
7. Does your transportation allow you to get to all the places you Participation: d475
would like to go? (yes/no)
8. Does your transportation let you get out whenever you want? Participation: d475
(yes/no)
9. Can you use your transportation with little or no advance Participation: d475
notice? (yes/no)
Occupation 1. How many hours per week do you spend working in a job for Participation: d850
which you get paid?
2. How many hours per week do you spend in school working Participation: d820/d825/d830
toward a degree or in a accredited technical training program?
(hours in class and studying)
3. How many hours per week do you spend in active homemaking Participation: d620/d630/d660
including parenting, housekeeping, and food preparation?
4. How many hours do you spend in home maintenance activities Participation: d650
such as yard work, house repairs, or home improvement?
5. How many hours per week do you spend in ongoing volunteer Participation: d855
work for an organisation?
6. How many hours per week do you spend in recreational Participation: d920
activities such as sports, exercise, playing cards, or going to
movies? Please do not include time spent watching TV or listening
to the radio
7. How many hours do you spend in other self-improvement Participation: d920
activities such as hobbies or leisure reading? Please do not include
time spent watching TV or listening to the radio
Social integration 1. Do you live alone, or with a spouse or significant other, children Participation: d750
(how many), other relatives (how many), roommate (how many),
attendant (how many)
2. If you don’t live with a spouse or significant other are you Participation: d770
involved in a romantic relationship? (yes/no)
3. How many relatives (not in your household) do you visit, phone, Participation: d760
or write to at least once a month?
4. How many business or organisational associates do you visit, Participation: d740
phone, or write to at least once a month?
5. How many friends (nonrelatives contacted outside business or Participation: d7500
organisational settings) do you visit, phone or write to at least once
a month?
6. With how many strangers have you initiated a conversation in Participation: d7504
the last month? (for example, to ask information or place an
order)? (none, 1 – 2, 3 – 5, 6 or more)
Economic Self- 1. Approximately what was the combined annual income of all Participation: d870
sufficiency family members in your household? (consider all sources including
wages and earnings, disability benefits, pensions and retirement
income, income from court settlements, investments and trust
funds, child support and alimony, contributions from relatives,
and any other source)

(continued overleaf )

579
 R. J. M. Perenboom and A. M. J. Chorus

Table 2 (continued )

Dimensions Items ICF

2. Approximately how much did you pay last year for medical care Participation: d8700
expenses? (Consider any amounts paid by yourself or the family
members in your household and not reimbursed by insurance or
benefits)
2 PHQ Physical Independence 1. In comparison to other able-bodied persons without a handicap, Participation: chapter 5 and 6
do you think you have more/less/equal physical independence, as
defined by your ability to take care of yourself, do house chores
and direct/guide others?
2. In comparison to other persons with disease/disorder, do you Participation: chapter 5 and 6
think you have more/less/equal physical independence, as defined
by your ability to take care of yourself, do house chores and direct/
guide others?
Mobility 1. In comparison to other persons without a handicap, do you Participation: chapter 4
think you have more/less/equal ability to move about effectively in
the environment (i.e. home, community, travel to other
geographical locations)?
2. In comparison to other persons with disease/disorder, do you Participation: chapter 4
think you have more/less/equal ability to move about effectively in
the environment (i.e. home, community, travel to other
geographical locations)?
Occupation 1. In comparison to other persons without a handicap, do you Participation: chapter 6 and 8
think you have more/less/equal ability to engage in productive
activities such as work (i.e. part-time, full-time, volunteer,
education or training, leisure/recreation, home management)?
2. In comparison to other persons with the disease/disorder, do Participation: chapter 6 and 8
you think you have more/less/equal ability to engage in productive
activities such as work (i.e. part-time, full-time, volunteer),
education or training, leisure/recreation, home management)?
Social integration 1. In comparison to other persons without a handicap, do you Participation: chapter 7
think you have more/less/equal ability to participate in and
maintain social relationships and activities (i.e. have romantic
relationship, have social contacts with family and friends, meet
people in general)?
2. In comparison to other persons with the disease/disorder, do Participation: chapter 7
you think you have more/less/equal ability to participate in and
maintain social relationships and activities (i.e. have romantic
relationship, have social contacts with family and friends, meet
people in general)?
Economic self- 1. In comparison to other persons without a handicap, do you Participation: d860 – 879
sufficiency think you have more/less/equal ability to sustain customary socio-
economic activity and independence (i.e. earn money, have income
and medical benefits available to you)?
2. In comparison to other persons with the disease/disorder, do Participation: d860-d879
you think you have more/less/equal ability to sustain customary
socio-economic activity and independence (i.e. earn money, have
income and medical benefits available to you)?
3 LHS Mobility Think about how you get from one place to another, using any Participation: chapter 4 (A&P)
help, aids, or means of transport that you normally have available
DOES YOUR HEALTH STOP YOU FROM GETTING
AROUND?
Not at all (you go everywhere you want to, no matter how far
away)
Very slightly (you go most places you want, but not all)
Quite a lot (you get out of the house, but not far away from it)
Very much (you don’t go outside, but you move around form
room to room indoors)
Almost completely (you are confined to a single room, but you can
move around in it)
Completely (you are confined to a bed or a chair, but you can
move around in it)
Physical Independence Think about things like housework, shopping, looking after Participation: chapters 5 and 6
money, cooking, laundry, getting dressed, washing, shaving, and (A&P)
using toilet

(continued overleaf )

580
 Measuring participation according to ICF

Table 2 (continued )

Dimensions Items ICF

DOES YOUR HEALTH STOP YOU FROM LOOKING

AFTER YOURSELF?
Not at all (you do everything to look after yourself)
Very slightly (you need a little help now and again)
Quite a lot (you need help with some tasks (such as heavy
housework or shopping), but no more than once a day
Very much (you do some things for yourself, but you need help
more than once a day. You can be left alone safely for a few hours)
Almost completely (you need help to be available all the time. You
cannot be left alone safely)
Completely (you need help with everything. You need constant
attention, day and night)
Occupation Think about things like work (paid or not), housework, gardening, Participation: d840-d859, d920,
sports, hobbies, going out with friends, travelling, reading, looking d640, d6505
after children, watching television, and going on holiday
DOES YOUR HEALTH LIMIT YOUR WORK OR LEISURE
ACTIVITIES?
Not at all (you do everything you want to)
Very slightly (you do almost all the things you want to)
Quite a lot (you find something to do all the time, but you cannot
do some things for as long as you would like)
Very much (you are unable to do a lot of things, but you can find
something to do most of the time)
Almost completely (you are unable to do most things, but you can
find something to do some time)
Completely (you sit all day doing nothing. You cannot keep
yourself busy or take part in any activities)
Social integration Think about family, friends, and the people you might meet during Participation: chapter 7 (A&P)
a normal day
DOES YOUR HEALTH STOP YOU GETTING ON WITH
PEOPLE?
Not at all (you get on well with people, see everyone you want to
see, and meet new people)
Very slightly (you get on well with people, but your social life is
slightly limited)
Quite a lot (you are fine with people you know well, but you feel
uncomfortable with strangers)
Very much (you are fine with people you know well but you have
few friends and little contact with neighbours. Dealing with
strangers is very hard)
Almost completely (apart from people who look after you, you see
no-one. You have no friends and no visitors)
Completely (you don’t get on with anyone, not even people who
look after you)
Orientation Think about taking in and understanding the world about you, Participation: chapter 3 (A&P)
and finding your way around in it
DOES YOUR HEALTH STOP YOU UNDERSTANDING
THE WORLD AROUND YOU?
Not at all (you fully understand the world around you. You see,
hear, speak, and think clearly, and your memory is good)
Very slightly (you have problems with hearing, speaking, seeing or
your memory, but these do not stop you doing these things)
Quite a lot (you have problems with hearing, speaking, seeing or
your memory which make life difficult a lot of the time. But, you
understand what is going on)
Very much (you have (he/she has) great difficulty understanding
what is going on)
Almost completely (he/she is unable to tell where he/she is or what
day it is. He/she cannot look after him/herself at all)
Completely (he/she is unconscious, completely unaware of
anything going on around him/her)
Economic Self- Think about whether health problems have led to any extra Participation: d870
sufficiency expenses, or have caused you to earn less than you would if you
were healthy

(continued overleaf )

581
 R. J. M. Perenboom and A. M. J. Chorus

Table 2 (continued )

Dimensions Items ICF

ARE YOU ABLE TO AFFORD THE THINGS YOU NEED?

Yes, easily (you can afford everything you need. You have easily
enough money to buy modern labour saving devices, and anything
you may need because of ill health)
Fairly easily (you have just about enough money. It is fairly easy to
cope with expenses caused by ill health)
Just about (you are less well off than other people like you;
however, without sacrifices you can get by without help)
Not really (you only have enough money to meet your basic needs
You are dependent on state benefits for any extra expenses you
have because of ill health)
No (you are dependent on state benefits, or money from other
people or charities. You cannot afford things you need)
Absolutely not (you have no money at all and no state benefits.
You are totally dependent on charity for your most basic needs)
4 RNL-index Indoor I move around my living quarters as I feel is necessary Participation d4600
(Wheelchairs, other equipment or resources may be used)
Community I move around my community, as I feel necessary. (Wheelchairs, Participation d460
other equipment or resources may be used)
Distant mobility I am able to take trips out of town, as I feel necessary Participation d4602
(Wheelchairs, other equipment or resources may be used)
Self care I am comfortable with how my self-care needs (dressing, feeding, Participation chapter 5
toileting, bathing) are met. (Adaptive equipment, supervision, and/
or assistance may be used)
Daily activity I spend most of my days occupied in a work activity that is Participation d810-d859
necessary or important to me. (Work activity could be paid
employment, housework, volunteer work, school etc. Adaptive
equipment, supervision, and/or assistance may be used)
Recreational and I am able to participate in recreational activities (hobbies, crafts, Participation d920
social activities sports, reading, television, games, computers, etc.) as I want to.
(Adaptive equipment, supervision, and/or assistance may be used)
I participate in social activities with family, friends, and/or Participation d9205
business acquaintances as is necessary or desirable to me (Adaptive
equipment, supervision, and/or assistance may be used)
General coping skills I feel that I can deal with life events as they happen n.q.
Relationships I assume a role in my family, which meets my needs and those of Participation d760
other family members. (Family means people with whom you live
and/or relatives with whom you don’t live but see on a regular
basis. Adaptive equipment, supervision, and/or assistance may be
used)
In general, I am comfortable with my personal relationships Participation d730-d799
In general, I am comfortable with myself when I am in the n.q.
company of others
5 IPA Social relations 1 The possibility to have a conversation on equal terms with Participation d750-d760
relatives and friends is (excellent, very good, moderate, poor, very
poor)
2 The quality of my relationship with partner and family is Participation d760
(excellent, very good, moderate, poor, very poor)
3 The respect I receive from partner and family is (excellent, very n.q.
good, moderate, poor, very poor)
4 The contact with acquaintances is (excellent, very good, Participation d7503
moderate, poor, very poor)
5 The respect I receive from acquaintances is (excellent, very good, n.q.
moderate, poor, very poor)
6 The frequency of contacts is (excellent, very good, moderate, Participation chapter 7
poor, very poor)
7 The possibility to have a sexual relationship is (excellent, very Participation d7702
good, moderate, poor, very poor)
Autonomy in self-care 1 The possibility to wash and dress myself, or have myself washed Participation d510, d540
and dressed, the way I want is (excellent, very good, moderate,
poor, very poor)
2 The possibility to wash and dress myself, or have myself washed Participation d510, d540
and dressed, when I want is (excellent, very good, moderate, poor,
very poor)

(continued overleaf )

582
 Measuring participation according to ICF

Table 2 (continued )

Dimensions Items ICF

3. The possibility to go to bed and to get up at the time I want is Participation d570
(excellent, very good, moderate, poor, very poor)
4. The possibility to go to the bathroom when I want is (excellent, Participation d530
very good, moderate, poor, very poor)
5. The possibility to decide when I want to eat and drink is Participation d550, d560
(excellent, very good, moderate, poor, very poor)
Family role The possibility to do shopping and cooking, or having the Participation d6200
shopping and cooking done, the way I want is (excellent, very
good, moderate, poor, very poor)
The possibility to clean my house or have my house cleaned to the Participation d6402
way I want is (excellent, very good, moderate, poor, very poor)
The possibility to do or have somebody do the domestic activities Participation d640
when I want is (excellent, very good, moderate, poor, very poor)
The possibility to do or to have somebody do the small repairs in Participation d650
my home the way I want is (excellent, very good, moderate, poor,
very poor)
My contribution to the activities at home the way I want is Participation chapter 6
(excellent, very good, moderate, poor, very poor)
The ability to spend my income the way I want is (excellent, very Participation d870
good, moderate, poor, very poor)
Mobility and leisure The possibility to go and move about in my own house where I Participation d4600
want is (excellent, very good, moderate, poor, very poor)
The possibility to go and move about in my own house when I Participation d4600
want is (excellent, very good, moderate, poor, very poor)
The possibility to visit neighbours, friends or acquaintances when I Participation d460
want is (excellent, very good, moderate, poor, very poor)
The possibility to make day trips, visits, and taking a holiday when Participation d4601, d4602, d920
I want is (excellent, very good, moderate, poor, very poor)
The ability to spend my time the way I want is (excellent, very Participation chapter 8 & 9
good, moderate, poor, very poor)
6 NHP part II Life areas Is your present state of health causing problems with your:
Work (that is, paid employment)? Participation d850
Looking after the home (cleaning & cooking, repairs, odd jobs Participation d630-d669
around the home, etc.)?
Social life (going out, seeing friends, going to the movies, etc.)? Participation d9205
Home life (that is, relationships with other people in your home)? Participation d750, d760
Sex life? Participation d7702
Interests and hobbies (sports, arts and crafts, do-it-yourself, etc.)? Participation d920
Vacations (summer or winter vacations, weekends away, etc.)? Participation d920
7 WHO-DAS-II Understanding and Concentrating on doing something for ten minutes? Body function b140, activity d160
36-items communication Remembering to do important things? Body function b144
Analyzing and finding solutions to problems in day to day life? Body function b1646, activity
d175
Learning a new task, for example, learning how to get to a new Activity d130-d159
place?
Generally understanding what people say? Activity d310
Starting and maintaining a conversation? Activity d3500, d3501, d3502
Getting around Standing for long periods such as 30 minutes? Activity d4154
Standing up from sitting down? Activity d4104
Moving around inside your home? Activity d4600
Getting out of your home? Activity d4600
Walking a long distance such as a kilometre (or equivalent)? Activity d4501
Self care In the last 30 days, how much difficulty did you have in:
Washing your whole body? Activity d5101
Getting dressed? Activity d540
Eating? Activity d550
Staying by yourself for a few days? n.q.
Getting along with Dealing with people you do not know? Participation d740
people Maintaining a friendship? Participation d7500
Getting along with people who are close to you? Participation d760
Making new friends? Participation d7500
Sexual activities? Participation d770
Life activities Taking care of your household responsibilities? Participation d630-d649
Doing most important household tasks as well? Activity d640

(continued overleaf )

583
 R. J. M. Perenboom and A. M. J. Chorus

Table 2 (continued )

Dimensions Items ICF

Getting all the household work done that you needed to do? Activity or participation d640
Getting all the household work done as quickly as needed? Activity or participation d640
Work or education In the last 30 days, how much difficulty did you have in:
your day to day work/school? Activity d820/d850
doing your most important work/school tasks well? Participation d820/d850
getting all the work done that you need to do? Participation d850
getting your work done as quickly as needed? Participation d850
Participation in society In the last 30 days:
How much of a problem did you have in joining in community Participation chapter 9
activities (for example festivities, religious or other activities)?
How much of a problem did you have because of barriers or Environment
hindrances in the world around you?
How much of a problem did you have living with dignity because Environment chapter 4
of the attitudes and actions of others?
How much time did you spend on your health condition, or its n.q.
consequences?
How much have you been emotionally affected by your health n.q.
condition?
How much had your health been a drain on the financial resources Participation d870
of you or your family?
How much of a problem did your family have because of your Environment e310
health problems?
How much of a problem did you have in doing things by yourself Activity d920
for relaxation or pleasure?
8 WHOQOL Physical health To what extent do you feel that physical pain prevents you from Activity in general
doing you what you need to do?
How much do you need any medical treatment to function in your Activity of self care/domestic life
daily life?
Do you have enough energy for everyday life? b1300
How well are you able to get around? Activity
How satisfied are you with your sleep? Function b1343
How satisfied are you with your ability to perform your daily living Participation/activity chapter 5
activities?
How satisfied are you with your capacity for work? Participation chapter 8
Psychological health How much do you enjoy life?
To what extent do you feel your life to be meaningful?
How well are you able to concentrate? b140
Are you able to accept your bodily appearance? b1801
How satisfied are you with yourself? b180
How often do you have negative feelings such as blue mood, b126
despair, anxiety, and depression?
Social relationships How satisfied are you with your personal relationships? Participation chapter 7
How satisfied are you with your sex life? Participation d7702
How satisfied are you with the support you get from your friends? Environment chapter 3
Environment How safe do you feel in your daily life? Environment in general
How healthy is your physical environment? Environment chapter 2 ‘Natural
environment and human made
changes to environment’
Have you enough money to meet your needs? Participation d870
How available to you is the information that you need in your day- Environment e535
to-day life?
To what extent do you have the opportunity for leisure activities? Environment e555
How satisfied are you with the conditions of your living place? e115, e120, e155
How satisfied are you with your access to health services? e580
How satisfied are you with your transport? e120, e540
9 SF-36 Role functioning During the past 4 weeks, have you had any of the following Participation chapter 8
physical problems with your work or other regular daily activities as a
result of your physical health?
Cut down the amount of time you spent on work or other Activity general
activities?
Accomplished less than you would like Participation in general (autonomy)
Were limited in the kind of work or other activities? Participation chapter 8
Had difficulty performing the work or other activities (for example, Activity chapter 8
it took extra effort)

(continued overleaf )

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 Measuring participation according to ICF

Table 2 (continued )

Dimensions Items ICF

Role functioning During the past 4 weeks, have you had any of the following Participation chapter 8
emotional problems with your work or other regular daily activities as a
result of any emotional problems (such as feeling depressed or
anxious)?
Cut down the amount of time you spent on work or other Activity general
activities?
Accomplished less than you would like? Participation
Didn’t do work or other activities as carefully as usual? Participation

n.q.: not quantifiable

The items of the dimension physical independence
aim at the environment. Although in itself questions
on the environment are not aimed at the participation,
they provide explicit insight in the environmental
barriers or facilitators.
The second dimension of the CHART aims at the
mobility component. It includes both items that measure
involvement as well as items that measure activities. For
instance, the question on entering and exiting the home
is an example of an activity, while the question if the
transportation allows getting to all places the person
would like to go, presupposes participation and autono-
my. There are also two questions that cannot easily be
attributed to the activities or participation component:
having independent access to rooms or telephone or
TV and the question if the person can use transportation
independently. Both questions include merely the execu-
tion of a task (doing things) as well as involvement in life
situations (communication with others, autonomy).
The items in the dimension on occupation, homemak-
ing, recreation and hobbies are all directed to involve-
ment in life situations, and mostly in interaction with
other persons. The same goes for the dimension of social
integration, which in itself can be seen as part of the defi-
nition of participation.
Finally, it also applies to the dimension of economic
self-sufficiency. The questions in this dimension ask for
the annual income and the amount of money the respon-
dent has spent on medical care. The question and the
answers do not provide information if the person is
dependent or independent in an economic sense.
The PHQ (Perceived Handicap Questionnaire) was
validated with spinal cord injury patients.7 Each of the
five dimensions consists of two – almost equal – ques-
tions, one for a comparison with other able-bodied
persons without a handicap, the second for comparison
with other people with the disease or disorder. So the
respondent has to compare himself with others. In fact
this instrument is aimed at the subjective experience of
involvement. All items of the dimensions are formulated
in terms of capacity. However, as the items include
terms like involvement, autonomy, engagement and
the possibility to sustain economic independence, we
define them as measuring participation and not activity.
The third questionnaire is the LHS (London Handi-
cap Scale).8 This instrument was developed to quantify
handicap at an interval level of measurement. It was
validated among several groups of patients with chronic
diseases.
The formulation of most items and the response cate-
gories is ambiguous. The response categories range from
merely the execution of tasks (activity component) to
involvement and autonomy (participation component).
For instance, the first dimension on mobility asks if the
health status stops the respondent from getting around.
The response categories that represents the severest level
measure on an activity level, referring to confinement to
bed or just moving around in a single room. The
response category representing the best state refers more
to participation, by stating that the person can go to
most places the person wants. The items measuring social
integration and economic self-sufficiency aim most at
participation, because all response categories measure a
certain state of social involvement. The item measuring
orientation on the other hand measures almost the
complete range of components, starting with the body
functioning component of being unconscious to activity
level (having problems with hearing, seeing etc) to invol-
vement (fully understanding the world).
A Dutch translation of the LHS is under validation at
this moment. Also, in the Netherlands, a child version
of the LHS is under development. In the Netherlands,
both the translation of the adult version and the child
version are used to generate a kind of ‘participation –
utility’ measure.
The fourth survey instrument is the Reintegration to
Normal Living Index (RNL-index).9 Psychometric prop-
erties of the index were assessed using three samples of
patients with varied diagnoses from several settings.
The RNL-index consists of 11 questions referring to

585
 R. J. M. Perenboom and A. M. J. Chorus
eight dimensions. The RNL appears to assess global
function by considering both patients’ perceptions and
objective indicators of physical, social and psychological
dimensions. In our opinion, with exception of two items,
the remaining items all refer to participation, because
autonomy of doing certain activities was incorporated
into the items (see table 2).
Psychometric properties of the Impact on Participa-
tion and Autonomy Questionnaire (IPA) were examined
based on five diagnostic groups from outpatient clinics
of two rehabilitation centres.10, 11 The questionnaire
consists of four sub-scales with a total of 23 items: social
relationships, autonomy in self-care, family role and
mobility and leisure time. With exception of the items
‘the respect I receive from partner and family’ and ‘the
respect I receive from acquaintances’ the remaining
items measure involvement in life situations and auto-
nomy of the individual. Autonomy is measured by
posing questions in the following way ‘the possibility
to do or have somebody do . . . the way I want’.
Part II of the Nottingham Health profile (NHP)
contains seven questions on participation.12 Psycho-
metric properties were reported for several disease
states. The NHP is intended for primary health care,
to provide a brief indication of a patient’s perceived
emotional, social and physical health problems. The
items refer to paid employment, taking care of the
household, leisure and recreation and relationships.
The WHODAS II (WHO Disability Assessment
Schedule 2) has been under development by WHO for
several years (www.who.int/icidh/whodas/generalinfo.html).
Psychometric testing of the WHODAS II has been rigor-
ous and extensive. In 1998, an earlier draft (89 items)
was tested in field trials in 21 sites and 19 countries.
Based on psychometric analyses and further field testing
in early 1999, the measure was shortened to 36 items,
and a 12-item screening questionnaire was also devel-
oped. In late 1999, the WHODAS II underwent reliabil-
ity and validity testing in 16 centres across 14 countries.
This instrument includes seven domains as well as a
global disability score, ranging from understanding and
communication to participation in society. The first
dimension on understanding and communication aims
at the level of body functioning and activity. Some-
times, it is not possible to distinguish between these
two components. For instance, the question about
concentrating on doing something for ten minutes
can be coded on a function level (sustaining attention
(b1400) as well as on an activity level (focusing atten-
tion d160)).
Other dimensions are measured on the activity level or
combinations of activity and participation. For instance,
586
the item on getting all the household work done as
quickly as needed can be seen as being involved in
society by trying to meet certain norms and values,
but on the other hand it can also be seen just at the
activity level (doing household activities).
A few items refer to the Environmental context. The
item on ‘how much of a problem a person has because
of barriers or hindrance in the world around one’ refers
to the environment in general, while the item on atti-
tudes refers to a specific domain in the environmental
component.
Some items of the WHODAS II could not be classi-
fied according to the ICF. The item: ‘staying by yourself
for a few days’ has no equivalence in the ICF. The same
goes for the items ‘how much time did you spend on
your health condition’ and ‘how much have you been
emotionally affected by your health condition’.
The WHOQOL (WHO Quality of life) was found to
be reliable and valid to be used in a diverse range of
cultures.13 It is not measuring actual participation or
execution of tasks, but the level of satisfaction in carry-
ing out these activities or in participating. Some items
are measured at the body level functioning (for instance
satisfaction with sleep and concentration). A special
dimension aims at the environment. However, in this
dimension one item refers more to participation
(economic self-sufficiency) then to the environment as
defined in the ICF.
The last instrument we considered measuring participa-
tion are two parts of the SF-36 (Short Form 36 General
Health Questionnaire): the part on role functioning physi-
cal and role functioning emotional.14 The first sub-scale
asks about four problems the respondent has encountered
due to physical health problems. Two problems are
measured on the activity level (cutting down the amount
of time spent on work and difficulty in performing the
work). The other items measure role difficulties on a parti-
cipation level: accomplishing less than you would like and
limitations in the kind of work. These problems refer to a
certain set of social norms and values.
The second sub-scale asks about three problems the
respondent has encountered because of an emotional
problem (feeling depressed or anxious). Two items
measure the role problems on a participation level:
‘accomplishing less than you would like’ and ‘didn’t
do work as carefully as usual’.
Discussion
In this article, we have evaluated nine generic instru-
ments published in English that measure some domains
of the participation list of the ICF. The items of the
 Measuring participation according to ICF
survey instruments were judged upon whether the ques-
tion posed is directed to execution of a task (activity
level) or to actual or perceived involvement in life situa-
tions, including autonomy and societal roles (participa-
tion-level). We did not use the qualifiers of capability or
performance to distinguish between activity level and
participation level as proposed by the ICF. We think
that performance in itself does not necessarily refer to
participation, while not performing does not necessarily
mean that someone is not participating. For instance,
participation is also being in control as measured by
questions in the following way: ‘the possibility to do
or have somebody doing things the way I (the respon-
dent) want’. A person who is physically completely
dependent on others but who is still in control of how
and when things are done according to his or her wishes,
is participating by fulfilling his societal role and personal
goals.
With this definition, we conclude that most instru-
ments evaluated measure one or more domains of the
activities and participation list of the ICF, but none of
them measure all the domains. Moreover, most instru-
ments are not solely dedicated to measure participation.
Most instruments include also items or response cate-
gories that aim at the activity level or even at the body
function level of the ICF. Instruments closest to measur-
ing solely participation are the Perceived Handicap
Questionnaire and the London Handicap Scale. Of
these, the PHQ is measuring the perception of participa-
tion (in comparison with others) rather then actual
participation. Considering the London Handicap Scale,
the items are formulated in terms of participation, but
the response categories include all components of the
ICF, from body function to participation. These compo-
nents are used to measure the level of hindrance to parti-
cipate. The more the response categories include body
function level, the more the person is restricted in parti-
cipation.
With our definition of participation we are aware
that this evaluation is just one interpretation and
therefore open for discussion. We, the authors, have
made an attempt to distinguish between items measur-
ing at the activity level and at the participation level.
With this article, we hope to contribute to the opera-
View publication stats
tionalization of the concept of participation according
to the ICF.
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