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Applying the ICF linking rules to compare population-based data from

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DISABILITY AND REHABILITATION, 2017
https://doi.org/10.1080/09638288.2017.1370734

ORIGINAL ARTICLE

Applying the ICF linking rules to compare population-based data from different
sources: an exemplary analysis of tools used to collect information on disability
Lenildo de Mouraa, Wederson Rufino dos Santosb, Shamyr Sulyvan de Castroc, Elizabeth Itod,
Danilo Campos da Luz e Silvae, Renata Tiene de Carvalho Yokotaf,g, Zohra Abaakouka,
Heleno Rodrigues Corr^ea Filhoh , Marco Antonio Gomes Perezi, Carolina Saskia Fellinghauerj and
Carla Sabariegod
a
Pan-Americana Health Organization (PAHO), Brasılia, Brazil; bSpecial Secretariat of the Rights of the Persons with Disabilities, Ministry of Justice
and Citizenship, Brasılia, Brazil; cPhysiotherapy Department, Federal University of Ceara (UFC), Fortaleza, Brazil; dDepartment of Medical
Informatics, Biometry and Epidemiology (IBE), Public Health and Health Services Research, Research Unit for Biopsychosocial Health, Ludwig-
Maximilians-Universit€at (LMU), Munich, Germany; eMinistry of Health, Brasılia, Brazil; fDepartment of Public Health, Scientific Institute of Public
Health, Brussels, Belgium; gDepartment of Sociology, Interface Demography, Vrije Universiteit Brussel, Brussels, Belgium; hDepartment of
Collective Health, School of Health Sciences, University of Brasilia (UnB), Brasilia, Brazil; iDepartment of Occupational Health and Safety Policies,
Secretariat for Social Security Policies, Ministry of Economy, Brasilia, Brazil; jSwiss Paraplegic Research (SPF), Nottwil, Switzerland

ABSTRACT ARTICLE HISTORY

Background: Data on disability are regularly collected by different institutions or ministries using specific Received 24 November 2016
tools for different purposes, for instance to estimate the prevalence of disability or eligibility of specific popu- Revised 16 May 2017
lations for social benefits. The interoperability of disability data collected in countries is essential for policy Accepted 20 August 2017
making and to monitor the implementation of the Convention on the Rights of Persons with Disabilities. The
first objective of this paper is to map and compare tools that collect data on disability for different purposes, KEYWORDS
more specifically the Brazilian National Health Survey and the Brazilian Functioning Index to the World International Classification
Health Organization (WHO) and the World Bank Model Disability Survey (MDS), currently recommended as a of Functioning, Disability
standard tool for disability measurement. The second objective is to demonstrate the usefulness and value of and Health; interoperability;
the International Classification of Functioning, Disability and Health Linking Rules to map and compare popu- health survey; disability
lation-based surveys and other content-related tools collecting data on disability, even when these have survey; disability benefit;
already been developed based on the International Classification of Functioning, Disability and Health. disability evaluation
Methods: Disability information collected with the three different tools was mapped and compared using
the International Classification of Functioning, Disability and Health Linking Rules.
Results: Although the disability module in the Brazilian National Health Survey is fundamentally different
from the MDS, the mapping disclosed that several modules of the Brazilian National Health Survey already
cover many aspects necessary to estimate prevalence and understand disability as currently recommended by
the WHO and the World Bank. The Brazilian Functioning Index and the MDS are both based on the
International Classification of Functioning, Disability and Health and are very similar in the approach and con-
tent of their questions on functioning. Specific information on environmental factors is essential to identify
needs and barriers, as well as to devise procedures to reduce injustice and inequalities. This information is still
not targeted broadly enough in both the Brazilian National Health Survey and the Brazilian Functioning Index.
Conclusions: Overall, this mapping exercise showed that applying the International Classification of
Functioning, Disability and Health linking rules to population-based data coming from different sources
provides researchers and stakeholders involved in decision-making with standardized and straightforward
information about overlaps and gaps.

ä IMPLICATIONS FOR REHABILITATION

Data on functioning and disability regularly collected with different purposes and by different institu-
tions or ministries within a country can be compared using the International Classification of
Functioning, Disability and Health as a reference framework and the International Classification of
Functioning, Disability and Health linking rules.

The recently published refinements of the International Classification of Functioning, Disability and
Health Linking Rules go beyond the sole linking to International Classification of Functioning, Disability
and Health categories and provide standardized procedures to document the perspective of linked
questions or the categorization of response options. They are therefore useful to compared tools that
have been developed based on the International Classification of Functioning, Disability and Health.

The current disability module of the Brazilian Health Survey needs a revision to be suitable to collect
data on disability that is Convention on the Rights of Persons with Disabilities conform and guaran-
tees interoperability with disability data from other sources in Brazil, especially from disability assess-
ment for social benefits and implementation of policies.

CONTACT Carla Sabariego Carla.Sabariego@med.lmu.de Department of Medical Informatics, Biometry and Epidemiology (IBE), Public Health and Health
Services Research, Research Unit for Biopsychosocial Health, Ludwig-Maximilians-Universit€at (LMU), 81377 Munich, Germany
ß 2017 Informa UK Limited, trading as Taylor & Francis Group
2 L. DE MOURA ET AL.
Introduction
The collection of data on disability is of utmost importance. Given
that 15% of the world population experiences significant disability
in their daily lives, disability is a public-health issue, and sound
data are essential to devise policy and public health interventions
[1]. Moreover, the Convention on the Rights of Persons with
Disabilities (CRPD) requires countries to monitor the collection of
relevant statistical data on disability, as stated in Article 31 [2].
National agencies are obliged to report reliable and comprehen-
sive data on disability regularly.
Data on disability are regularly collected by countries for differ-
ent purposes, for instance to estimate the prevalence of disability
or to decide on the eligibility of specific populations for social
benefits. Data for prevalence estimates can be obtained at a
rather low level of precision from censuses, for example by includ-
ing impairment or functioning screeners [3]. Impairment screeners
first identify the “disabled” population by asking about the pres-
ence of an impairment or health condition. Functioning screeners
target limitations in some domains of functioning caused by a
health condition. Health and disability surveys not only estimate
prevalence much more precisely, but also deliver specific informa-
tion about levels of disability in specific groups, their needs and
the barriers they face in daily life [4]. Disability assessments carried
out to determine disability for eligibility for social benefits, such
as disability pension, can also provide information on associated
health conditions and impairments [5]. Specific tools are used in
all of these data-collection approaches; the purpose of data collec-
tion shapes the structure and content of such tools.
Disability assessment to establish eligibility for social benefits is
an important source of information about disability. Disability
assessments determine the severity of disability to decide whether
a person is entitled to a certain benefit or not [5]. Three
approaches can be applied. The oldest and by far the most widely
used is the impairment approach, which reflects the medical
model and is based on health conditions and associated impair-
ments. A second, broader approach is the functional-limitation
approach, which evaluates a person’s ability to carry out basic or
simple activities of daily life, such as standing or walking. For this
approach, a range of Functional Capacity Evaluation (FCE) tools is
available [5]. The disability approach is based on the World Health
Organization’s (WHO) International Classification of Functioning,
Disability and Health (ICF) and provides a direct assessment of dis-
ability, which is understood as the outcome of a health condition
and environmental factors. It includes medical, environmental, and
personal determinants of disability. Since every person who
requests benefits due to disability has to undergo a disability
assessment, this can be a valuable source of data about
disability in a country and is sometimes even used to estimate
disability prevalence.
Brazil is currently revising the disability module of their
National Health Survey, the PNS (Pesquisa Nacional de Sau de).
The PNS is a household-based nationwide survey carried out every
five years in cooperation between the Ministry of Health and the
Brazilian Institute of Geography and Statistics (IBGE) [6]. In 2013,
60,202 individual interviews were carried out in several cities with
more than 80,000 inhabitants. The Brazilian government has
inserted one module for persons with disabilities into the PNS to
set priorities for public-health strategies and policies. The module
collects information about health conditions and limitations in
daily life, use of rehabilitation services, assistive products and the
cause of the disability. It is important to note that the medical
model of disability was predominant in Brazil before the Federal
Constitution of 1988, and public policies in the country were
focused on assistance and family care. This is reflected in the
structure of the current disability module. The new constitution
represented an advance for persons with disabilities, as it included
legal changes in work, education, accessibility and social assist-
ance. The rights of persons with disabilities were further sup-
ported by the National Policy for Integration of Persons with
Disabilities (Law 3298 of 1999) and the ratification of the CRPD in
2008 [7–9]. A corresponding revision of the current PNS disability
module is, therefore, needed.
To improve the suitability of the PNS disability module to
monitor the CRPD, the Ministry of Health – in collaboration with
the Pan-American Health Organization (PAHO) – has decided to
revise and expand it using current WHO recommendations for
disability measurement. Moreover, the revision should consider
that interoperability of disability data in the country is needed for
policy making and to monitor the implementation of the CRPD.
For instance, data about environmental barriers and needs of per-
sons with significant levels of disability are very restricted in the
Brazilian Functioning Index (IF-Br) – the tool used in Brazil for dis-
ability assessment in the eligibility evaluation for disability pension
– but could be collected in the PNS in more detail and provide
policy makers with the information required to develop public-
health interventions for this population. The IF-Br includes a much
larger inventory of problems in functioning experienced in daily
life than the PNS and could provide more detailed information
about specific groups identified in the PNS, like persons with
moderate levels of disability in need of strategies to prevent wor-
sening of their level of disability. The IF-Br is based entirely on the
ICF and was introduced in 2014 in the evaluation system after
being specifically adapted and validated. It will be applied from
2018 on for further evaluation of eligibility for benefits for persons
with disability [10].
The WHO and the World Bank currently recommend the Model
Disability Survey (MDS) as a standard tool for disability measure-
ment. The MDS is based on the WHO’s ICF and operationalizes
disability as the outcome of the interaction between a health con-
dition and environmental factors, going beyond the focus on a
person’s health state and impairments [3,4]. As a consequence,
the collection of detailed data on health conditions, functioning
and environmental factors is necessary. The MDS has already been
translated and culturally adapted from English to Brazilian
Portuguese, and about 2000 pilot interviews in five states are
planned in 2017 to test the applicability of the instrument in
Brazil. Using the MDS as a reference to revise existing data-collec-
tion strategies as envisioned in the PNS requires mapping current
information collected in both tools to disclose overlaps and gaps.
Additionally, to ensure interoperability of disability data collected
in the country, it is also necessary to map the structure and con-
tent of the IF-Br to the PNS and MDS.
The first objective of this paper is to map and compare the
PNS and the IF-Br to the MDS. Specific aims are to: (1) perform a
descriptive comparison of the parts of these tools targeting func-
tioning, health conditions and environmental factors, (2) carry out
an in-depth analysis of their content, and (3) provide recommen-
dations for the revision of the disability module of the PNS. Any
harmonization or mapping exercise needs a reference framework
to compare sources. The ICF provides a sound and neutral, univer-
sal taxonomy on functioning and disability that serves as a frame-
work for mapping and harmonization. However, defining a
framework is still not enough. Making sure that the harmonization

procedure is objective, standardized, and reliable is of core
importance, and this is only assured if a pre-defined, standardized
procedure is applied. The ICF Linking Rules provide the standar-
dized and reliable procedure [11] required and have been exten-
sively implemented and revised [12–14]. One could argue that the
ICF Linking Rules are not needed to compare tools that were
developed based on the ICF, such as the MDS or the IF-Br. This
would apply if the ICF Linking Rules only linked questions to spe-
cific ICF categories, linking for instance “to what extent do you
have difficulties sleeping?” to the ICF category b134. The recently
published refinements of the ICF Linking Rules go beyond the
sole linking to ICF categories and provide standardized procedures
to document the perspective of linked questions – in the example
above, “disability” – or the categorization of response options – in
the example above, the extent of the problem [14]. Both aspects
that can vary considerably, even among ICF-based tools. This
paper, therefore, has a second objective. In line with the goals of
the “Comparability of health and related information” papier ser-
ies, this paper aims to demonstrate the usefulness and value of
the ICF Linking Rules to map and compare population-based sur-
veys and other content-related tools, even when these have
already been developed based on the ICF.
Methods
Data sources
The MDS is based on the ICF and was designed to provide reliable
prevalence rates, as well as information on barriers faced by and
needs of persons with mild, moderate, and severe levels of disabil-
ity, always in direct comparison to the general population. The
current version of the MDS encompasses three core modules con-
sidered necessary to understand and describe disability. Module
4000 measures performance, defined as how people currently
function in day-to-day life taking into account all features, both
positive and negative, of his or her environment. Module 5000
measures capacity, defined as the intrinsic health state of an indi-
vidual and influenced solely by the existence of health conditions
or health problems, regardless of environmental facilitators or bar-
riers and presence of health conditions. Module 3000 measures
environmental factors, including information about hindering or
facilitating aspects of the general environment, family and social
support, attitudes of others, accessibility to information, regular
use of medication, personal assistance, assistive products for self-
care, mobility, seeing, hearing, work and education and facilitators
at home, school, work and community. Five further modules tar-
get sociodemographic characteristics (module 1000), work (mod-
ule 2000), responsiveness of the health-care system (module
6000), well-being (module 7000), and empowerment (module
8000). The MDS is a general population survey. It is a self-report
tool, and data are collected in individual interviews by trained
interviewers. The long and short versions of the MDS are available
at http://www.who.int/disabilities/data/mds/en/.
The PNS is a national health survey carried out across Brazil
every five years focusing on major non-communicable diseases
(NCDs), healthy life style, access to medical care and morbidities
[7]. The PNS questionnaire is composed of modules about the
socio-demographic profile (C, D, E, F, and M modules), disabilities
(G module), private health insurance coverage (I module), health
services use (J module), perceived health status (N module), acci-
dent and violence (O module), life style (P module), chronic ill-
nesses (Q module), health of the elderly (K module, individuals
older than 60) and mammography coverage (K module, women
aged 50 years or older), children’s (L module) and women’s health
COMPARING POPULATION-BASED DATA 3
(R module), pre-natal care (S module), oral health (U module) and
medical care (X module). Anthropometric and blood-pressure
measurements and blood and urine samples are also collected to
study risk factors for common chronic diseases [6]. The PNS mod-
ule on disability focus on four impairment groups: intellectual,
physical, visual, and hearing. If a person admits having the impair-
ment, standardized questions are asked about: (1) the cause (con-
genital, illness or accident) and the specific impairment, (2) if the
impairment is associated with any limitations in usual activities,
such as going to school, playing, or working (one question), and
(3) if the person attends a rehabilitation service (one question).
The use of assistive products is asked only for persons with visual
impairment. The PNS is a household survey available at: http://
www.pns.icict.fiocruz.br.
The IF-Br is used to assess the functioning of applicants seek-
ing social and work benefits and was developed with the support
of the Special Secretariat of the Rights of Persons with Disabilities
of the Ministry of Justice and Citizenship. After approval of the
Brazilian Inclusion of People with Disabilities Act (LBI) in 2015 [7],
the scope of application of the IF-Br was expanded to include fur-
ther social benefits since the law requires that disability assess-
ments for any benefit must be based on the ICF and carried out
in an interdisciplinary and multi-professional way. The following
principles apply to the IF-Br: (1) the tool must have the ICF frame-
work as a reference, (2) it must identify barriers in the physical,
social, and attitudinal environments, and (3) it should be applic-
able to persons with all types of impairments. The IF-Br has four
parts. In the first part, personal data are collected. In the second,
impairments in the following body functions are recorded (yes/
no): mental; pain; voice and speech; cardiovascular; hematologic;
immune and respiratory function systems; digestive, metabolic
and endocrine function systems; genitourinary and reproductive
function systems; neuromusculoskeletal functions; and skin func-
tions and related structures. The third part encompasses over 40
questions on functioning divided into seven domains: (1) sensory
[two questions]; (2) communication [five questions]; (3) mobility
[eight questions]; (4) personal care [eight questions]; (5) domestic
life [five questions]; (6) education, work and economic life [five
questions]; (7) socialization and community life [eight questions].
The specific impairment of the applicant, i.e., hearing, cognitive or
mental, motor or visual, is recorded in the last part. The IF-Br is
applied as an interview by medical doctors and social workers to
persons requesting specific social benefits. The IF-Br manual is
available at: http://www.actafisiatrica.org.br/imagebank/pdf/
Manual_do_IF-Br.pdf.
Since providing recommendations for revision of the PNS dis-
ability module is the primary aim of the paper, the in-depth ana-
lysis using ICF Linking Rules was restricted to the modules
targeting disability, functioning, health conditions and environ-
mental factors in the three tools: modules 3000, 4000, and 5000
of the MDS, modules G, N, Q, and K of the PNS and the IF-Br part
on functioning.
Mapping and content analyses
The recently revised ICF Linking Rules were applied [11]. As rec-
ommended, the linking was carried out by two professionals
trained in the ICF, an occupational therapist (EI) and a physiother-
apist (SSC). The linking process begins by extracting the main con-
cepts from questions, outcomes and/or clinical measures and by
linking these concepts to the most precise ICF category. For
instance, in the question “How much of a problem is feeling tired
and not having enough energy?” (item I4021 from the MDS), the
main concepts “feeling tired” and “not having enough energy” are
4 L. DE MOURA ET AL.
first defined and then linked to the ICF category b1300 Energy
level. Rules also provide standardized procedures to document
the perspective of the concepts and the categorization of
response options [14]. In the previous example, the perspective
would be disability, while the response options (“no” to “extreme
problem”) focus on the intensity of the problem. According to the
ICF Linking Rules, all questions in each selected module, as well
as response options, were examined, and main concepts were
extracted by the two researchers independently [11]. If disagree-
ment arose, a consensus was reached by consulting a third
researcher (CS). The perspective adopted in the questions, such as
disability or quality of life, the classification of response options
and the additional concepts were also extracted.
Results
A comparison of general characteristics of the PNS, IF-Br and MDS
is shown in Table 1. One purpose of the current PNS module on
disability is to identify whether people experience limitations in
daily life. This corresponds with the focus of the MDS, but the
PNS includes only a single question on to what extent the intel-
lectual, physical, visual, or auditory impairment is associated with
limitations in usual activities while this is done in the MDS by ask-
ing several questions targeting 17 domains of functioning. Even
considering the further PNS modules, the MDS remains much
broader than the PNS and the IF-Br, as it includes a whole module
on capacity. These 22 questions target the individual’s intrinsic
health state due to the existence of health conditions or health
problems and regardless of environmental facilitators or barriers.
A whole module on performance with 47 questions targets how
people currently function in day-to-day life, taking into account all
positive and negative features of the environment. These ques-
tions are to be answered by all respondents who were selected
for the individual questionnaire. In both modules, the general
introduction to the questions is used to set the frame for perform-
ance1 and capacity.2 In the PNS, all respondents were asked a
total of 13 questions on functioning, while persons aged 60 years
or older answered 12 additional questions on Activities of Daily
Living (ADLs). Performance is covered in the PNS (module N) with
three questions on functioning (mobility, seeing, and hearing)
stated after entrance questions about the availability of assistive
products. If the person has an assistive product, he or she should
take it into account when answering the questions on functioning.
All other questions on functioning target capacity. The IF-Br, in
contrast, has 41 questions about performance. The MDS and the
IF-Br use standardized ordinal scales as response options to all
questions on functioning. While in the MDS the respondent rates
the extent of a problem or difficulty (intensity) in an area ranging
from 1 (no problem) to 5 (extreme problem), in the IF-Br the inter-
viewer rates the extent of dependency in carrying out a task rang-
ing from 25 (total dependence) to 100 (total independence). In
the PNS, response options vary and include not only “intensity”,
but also “frequency” of problems and response options referring
to “confirmation or agreement” (Yes/No; “No, because she/he
doesn’t need”). A general overview of the questions on function-
ing in both surveys is provided in Table 2.
In regard to environmental factors, the PNS module on disabil-
ity only asks about the use of rehabilitation services, and in the
presence of a visual impairment, about assistive products. In fur-
ther PNS modules, four questions address the use of specific
assistive products (module N). In the IF-Br, environmental factors
are only addressed if the applicant cannot execute a task at all. In
this case, the environmental factors associated with not being
able to complete a task are recorded for all five ICF environmental
factors chapters. In contrast, the MDS includes a specific, broad
and independent module (63 questions) to collect information
about all the environmental factors chapters of the ICF (Table 1).
The only environmental factors shared by the MDS and the PNS3
are assistive products for mobility and communication (MDS ques-
tions I3040, I3045, and I3050, PNS items N2, N19, and N21), as
well as one question targeting the internalization of negative atti-
tudes by others (question I3030 from the MDS and N17 from the
PNS). In the MDS, however, not only use, but also need for assist-
ive products for mobility, hearing, seeing, communication, work
and education are targeted. A general overview of both ICF chap-
ters covered in each survey, as well as of questions linked to the
ICF, is provided in Tables 2 and 3.
Health conditions are addressed by both the MDS and the
PNS, but not by the IF-Br. The MDS covers a whole range of
health conditions and impairments, such as loss of hearing and
vision and respiratory, heart and mental conditions (Table 4). For
each condition, respondents are first asked if they have it. If the
respondent replies “yes”, three further questions follow: “Have you
ever been told by a doctor (or another health professional) that you
have [disease name]?”, “In the last 12 months, have you been given
any medication for [disease name]?” and “In the last 12 months,
have you been given any other treatment for [disease name]?” The
PNS covers sleeping disorders, hypertension, diabetes, hyperchol-
esterolemia, cardiovascular diseases, asthma, chronic respiratory
diseases, arthritis, back pain, depression, mental disorders, cancer,
chronic renal failure, and work-related diseases. If a person claims
to have a health condition, condition-specific questions are asked.
The MDS and the PNS also include a very similar question about
self-rated health. Health conditions are not addressed in the IF-Br,
only the presence (yes/no) of several impairments.
Discussion
In the present study, we applied ICF Linking Rules to systematic-
ally map and compare the Brazilian Health Survey PNS and the
IF-Br to the World Bank and the WHO MDS in the scope of the
current revision of the disability module of the PNS. Although the
PNS disability module is fundamentally different from the MDS,
the mapping disclosed that several PNS modules already cover
many aspects necessary to estimate prevalence and understand
disability as currently recommended by the WHO and the World
Bank and required by the CRPD (Table 4). The IF-Br and the MDS
are both based on the ICF and operationalize the understanding
of disability as the outcome of the interaction between health
problems and architectural, political, social, and attitudinal aspects
of the environment. Both tools are very similar in the approach
and content of their questions on functioning. Specific informa-
tion on environmental factors is essential to identify needs and
barriers, as well as to enact policies to reduce injustice and
inequalities, as requested by the CRPD, but still not targeted
broadly enough in both the PNS and the IF-Br. How data on dis-
ability are collected clearly reflects the underlying conceptualiza-
tion of disability. The current PNS disability module still reflects an
understanding of disability as impairment (intellectual, physical,
visual, or auditory) that might directly cause limitations in activ-
ities of daily life and for which specific treatment (rehabilitation) is
required. This understanding comes very close to a medical model
of disability and is only partially useful to monitor the CRPD, in
which persons with disabilities are defined as including “ … those
who have long-term physical, mental, intellectual or sensory impair-
ments which in interaction with various barriers may hinder their
full and effective participation in society on an equal basis with oth-
ers” [2]. The PNS module contrasts sharply with the structure and
Table 1. Overview of the MDS, the PNS, and the IF-Br.
MDS IF-Br PNS
Name of survey Model Disability Survey Brazilian Functioning Index National Health Survey
Development and promotion World Health Organization World Bank Brazilian Ministry of Work and Social Security Health Ministry of Brazil Brazilian Institute of Geography and
Statistics – IBGE Oswaldo Cruz Foundation – FIOCRUZ
Country Worldwide Brazil Brazil
Scope National and regional collection of population data about Functioning assessment of persons under Collection of population data about health and health
disability evaluation for granting social and work determinants
benefits
Collection mode Interview Interview Interview
Assessment Self-reported – Interviewer rating Self-reported Blood samples
Modules 8 7a 23
FUNCTIONING
Capacity assessment Yes Nob Yes
Performance assessment Yes Yes Yes
Number of questions to assess capacity 22 0 21c
Number of questions to assess performance 48 41 3
Functioning questions time frames Last 30 days Only at the interview time Last 2 weeks
Perspective of response options
Intensity Yes Yes Yes
Frequency No No Yes
Statement No No Yes
Yes/No No No Yes
Scale Ordinal 1 (No problems) to 5 (Extreme problems) Ordinal 25 (Total dependence) to 100 (Total Ordinal 1 (None) to 5 (Can’t do it) 1 (No day) to 4 (Every
independence) day) 1 (Yes, all), 2 (Yes, some), 3 (No, none) 1 (Less than
6 months) to 6 (Never)
Scoring Construct metrical scalesd to capacity and performance; score Domains scores are the means of their ques- There are no scores, descriptive statistics are used.
computation for each respondent tions. Total score is the mean of the
domain scores
Weight of different domains Considered in the construction of the metric scales Use of the Linguistic Fuzzy Model; three condi- Not considered
tions describing the groups of persons in
high-functioning risk situation for each
kind of impairment
Cutoff points for disability Defined Defined Not defined
ENVIRONMENTAL FACTORS
e
Barrier assessment Yes Partial No
Facilitator assessment Yes No 4 questionsf
Assessment method Independent module Verified for each question on functioning if a N/A
task cannot be executed
Assessment type Closed questions Open questions N/A
Coverage All ICF environmental-factor chapters All ICF environmental-factor chapters Use of specific assistive devices
HEALTH CONDITIONS
Content Vision and hearing loss; hypertension; diabetes; arthritis; Sleep disorders; prostate cancer; hypertension; diabetes;
arthrosis; stroke; migraine; back pain or disc problems; stroke; rheumatism/arthritis; cancer; back pain; cardiac,
leprosy; amputation; polio; gastritis/ulcer; cancer; trauma; renal, respiratory, mental and work-related diseases
tuberculosis; kidney; skin; respiratory, heart and mental
diseases
Kind of information collected The MDS first asks, regarding all conditions addressed, The PNS has a standard question on health conditions: “Has
whether the respondent has a condition. If the person a doctor given you a diagnosis of [diseases]?”. If the per-
answers “yes”, s/he is then asked if s/he has been diag- son answers “yes”, additional questions about age of first
nosed by a medical professional and whether or not s/he diagnosis; regular health care; reason for not consulting
has received medication and/or other treatment for the the doctor; use of medicines; payment for medicines and
condition within the past 12 months. treatment; time since the last treatment; and place, pay-
ment and continuity of treatment.
Time frame Last 12 months Last 2 weeks
Question about general appraisal of health? Yes Yes
Question Including your physical and mental health: In general, how Generally, how do you evaluate your health?
would you rate your health today?
Response options Very good; Good; Neither poor nor good; Poor; Very poor Very good; Good; Normal; Bad; Very bad
a
The IF-Br is composed of domains.
b
Only if “not accomplish a task” is a personal option.
c
Twelve of these questions are only asked for persons 65þ.
COMPARING POPULATION-BASED DATA

d
Use of item-response theory (Rasch Polithomic Model).
e
Only if the barriers are mentioned as reasons for not accomplishing a task.
f
Three questions regarding of the use of specific assistive devices, which can be seen as facilitators, are stated before the questions on mobility, seeing and hearing and one question about attitudes are asked, but no
5

extra module on facilitators is available.

6 L. DE MOURA ET AL.
Table 2. ICF chapters covered in the MDS, PNS, and IF-Br.
ICF chapter
b1 Mental functions
b2 Sensory functions and pain
b4 Functions of the cardiovascular, hematological, immunological and respiratory systems
d1 Learning and applying knowledge
d2 General tasks and demands
d3 Communication
d4 Mobility
d5 Self-care
d6 Domestic life
d7 Interpersonal interactions and relationships
d8 Major life areas
d9 Community, social and civic life
e1 Products and technology
e2 Natural environment and human-made changes to environment
e3 Support and relationships
e4 Attitudes
e5 Services, systems and policies
content of the IF-Br, which operationalizes the biopsychosocial
understanding of disability proposed by the WHO in the ICF. In its
current format, the PNS disability module neither fulfills the
requirements of the Inclusion of People with Disabilities Act
(IPDA) passed in Brazil 2015 [7] nor is suitable to fully monitor the
CRPD [15]. It is important to stress, however, that further PNS
modules already collect data useful to measure disability as rec-
ommended by the WHO and that due to the complex ICF concep-
tualization, not one but three modules are used to measure
disability in the MDS.
Measuring disability with the biopsychosocial model proposed
by the WHO in the ICF is challenging and requires a broad data-
collection strategy. In the MDS, disability is operationalized as dif-
ficulties in capacity and as problems in performance for measure-
ment purposes. While capacity is defined as the functioning level
of individuals in day-to-day life influenced solely by the existence
of health conditions or health problems, performance is defined
as the functioning level taking into account both health condi-
tions or health problems and all positive and negative features of
the environment. Performance is the concept that reflects disabil-
ity in line with the ICF and the core focus of questions on func-
tioning in both the MDS and the IF-Br. However, for WHO the gap
observed in countries between capacity and performance provides
an important clue on the impact of the environment, i.e., the per-
centage of persons with severe capacity difficulties that experi-
ence severe disability indicates whether the environment is
facilitating or hindering. The PNS contains several questions on
capacity, above all in modules K, “Activities of daily living”, which
is restricted to the elderly, and in module N, “Perception of health
status”. The first recommendation of the present study is to con-
sider merging the capacity questions into a single module for all
respondents and to calibrate the questions in these sections to
the capacity questions in the MDS. The second recommendation
is to add to the PNS a brief set with selected questions on per-
formance, preferably items (or domains) of the IF-Br that overlap
with the MDS, to ensure interoperability of the data.
The open question is how to select capacity and performance
questions to be reviewed or added. In the ICF, disability is under-
stood as a continuum, ranging from low to high levels of disabil-
ity, where all persons, regardless of the presence of health
conditions or problems, are represented. As a consequence, both
capacity and performance questions in the MDS include items
suitable to identify persons with mild, moderate and severe prob-
lems and to construct metrical scales of capacity and performance
using statistical models. In this sense, it is recommended to select
items from the MDS that cover the capacity and performance
MDS IF-Br PNS
x x
x x
x
x x
x
x x
x x x
x x x
x x x
x x
x x x
x x
x x x
x x
x x
x x x
x x
continuum, i.e., are suitable to capture mild, moderate and severe
problems. This can be done applying the methodology proposed
by the WHO (Item Response Theory) to the data to be collected
in the planned pilot of the MDS in Brazil [3]. The same method-
ology has been recently applied in the validation of the IF-Br and
can be used as a reference [16]. According to the concept of the
continuum, the modules on capacity and performance should not
be restricted to a specific subgroup, but be answered by all
respondents so that the distribution of disability in the country
can be assessed and rates of severe disability estimated. An
important issue regarding measurement is the standardization of
response options of PNS questions on functioning.
Specific and detailed information on the architectural, political,
social, and attitudinal aspects of the environment is essential to
identify needs and barriers that hinder persons with disabilities
from a “full and effective participation in society on an equal basis
with others”, as required in the CRPD. This specific information is
missing in both the PNS and the IF-Br, although both tools
address environmental aspects. It has already been demonstrated
how environment data collected with the MDS can be analyzed to
identify the most relevant environmental factors for specific popu-
lations [17]. Using the same methodology and data of the MDS
pilot study planned in Brazil, it will be possible to define which
are the most important environmental factors for Brazil, i.e., the
core environmental factors to be included in a brief environmental
factors set in the PNS. The inclusion of a similar set in the If-Br is
recommended.
While the MDS uses three modules to measure disability, the
PNS uses only one. The decision on how to measure or how
extensively to measure disability in a health survey must take into
consideration not only conceptual issues, but also feasibility, costs
and the burden on interviewers and respondents. As a disability
survey, the MDS is very comprehensive, but long and time con-
suming. To make it feasible to add the MDS to existing surveys, a
brief version has recently been proposed, and a manuscript on its
psychometric properties is being prepared. The recommendation
of the present study is to use data of the planned pilot study in
Brazil to come up with a comparable brief module on disability
which is precisely tailored to the country’s needs and culture.
Our study shows that applying the ICF Linking Rules to popula-
tion-based data coming from different sources, including ICF-
based tools, is feasible, meaningful and provides researchers and
stakeholders involved in decision-making with standardized and
straightforward comparisons. In the present study, the ICF Linking
Rules have been applied in what might be called the “preparation
phase of a revision process”. ICF Linking Rules are also suitable for
Table 3. Corresponding questions on functioning in the Model Disability Survey (MDS), Brazilian Health Survey (PNS), and Brazilian Functioning Index (IF-Br).
ICF code
b1302 Appetite
b1300 Energy level
b1301 Motivation
b134 Sleep functions
b1400 Sustaining attention
b144 Memory functions
b1470 Psychomotor control
b152 Emotional functions
b1646 Problem-solving
b21000-Binocular acuity of dis-
tant vision
b21002-Binocular acuity of
near vision
b230 Hearing functions
b280 Pain
b440 Respiration functions
b450 Additional respiratory
functions
d110 Watching
d115 Listening
MDS question
I4021. How much of a problem is feeling tired and not hav-
ing enough energy?
I4020. How much of a problem do you have with sleep?
I5007. How much difficulty do you have sleeping because of
your health?
I4034. How much of a problem is forgetfulness for you?
I4035. How much of a problem is remembering to do the
important things in your day-to-day life?
I4024. How much of a problem do you have with feeling
sad, low or depressed?
I4025. How much of a problem do you have with feeling
worried, nervous or anxious?
I5013. How much difficulty do you have with feeling sad,
low or depressed because of your health?
I5014. How much difficulty do you have with feeling worried,
nervous or anxious because of your health?
I4036. How much of a problem is finding solutions to day-to-
day problems that you might have?
I4015. How much of a problem do you have with seeing an
object at arm's length?
I4016. How much of a problem do you have with seeing an
object at arm’s length?
I4017. How much of a problem do you have with hearing
what is said in a conversation with another person in a
quiet room?
I4018. How much of a problem do you have with hearing
what is said in a conversation with another person in a
noisy room?
I4019. How much of a problem is having pain in your day-
to-day life for you?
I5017. How many bodily aches or pains do you have?
I4022. How much of a problem do you have with shortness
of breath? I5008. How much difficulty do you have with
shortness of breath because of your health?
I4023. How much of a problem do you have with coughing
or wheezing?
PNS question PNS response options IF-Br area
N14. In the last two weeks, how often did you have eating 1. No day; 2. Less than half the days; 3. More than half the
problems, like lack of appetite or eating much more than days; 4. Almost every day
usual?
N11. In the last two weeks, how often did you have prob-
lems with not feeling rested during the day, feeling tired,
without energy?
N12. In the last two weeks, how often did you have little
interest or felt no pleasure in doing things?
N10. In the last two weeks, how often did you have prob-
lems with sleep, like difficulty falling asleep, waking up
frequently during the night or sleeping more than usual?
N13. In the last two weeks, how often did you have trouble
focusing on your usual activities?
N15. In the last two weeks, how often were you slow to
move or speak, or, on the contrary, very agitated or
restless?
N16. In the last two weeks, how often did you feel
depressed, down or without perspective (i.e., hopeless)?
[N21: Do you use any kind of devices (glasses, contact lenses, 1. None; 2. Mild; 3. Moderate;
magnifying glasses) to help see?] N22. Generally, what 4. Intense; 5. Can't do it
degree of difficulty does _____have seeing at a distance?
(Recognize a known person across the street at a distance
of about 20 meters)
[N21: Do you use any kind of devices (glasses, contact lenses, 1. None; 2. Mild; 3. Moderate;
magnifying glasses) to help see?] N23. Generally, what 4. Intense; 5. Can't do it
degree of difficulty do you have seeing things that are
close? (Recognize an object that is at hand or reading)
[N19: Do you use a hearing device?] N20. Generally, what 1. None; 2. Mild; 3. Moderate;
degree of difficulty do you have hearing? 4. Intense; 5. Can't do it
N4. Do you feel discomfort or chest pain when you go up a N4, N5: 1. Yes; 2. No N7: 1. It
hill, climb the stairs or walk fast on a flat surface? N5. is relieved in 10 minutes or
When you walk on a flat surface at normal speed, do you less; 2. It is relieved more
feel pain or chest discomfort? N7. If you stop, what hap- than 10 minutes; 3. It is not
pens to the pain or discomfort in your chest? relieved
COMPARING POPULATION-BASED DATA
Watching
Listening
(continued)
7

Table 3. Continued
ICF code
d159 Basic learning, other
specified and unspecified
(learning a new task)
d177 Making decisions
d240 Handling stress and
other psychological
demands
d2401 Handling stress
d329 Communicating –
receiving
d349 Communicating –
producing
d350 Conversation
d355 Discussion
d360 Using communication
devices and techniques
d4
d410 Changing basic body
positions
d4154 Maintaining a standing
position
d430–d449 Carrying, moving
and handling objects
d4300 Lifting
d440 Fine hand use
d498 Mobility, other specified
(getting where you want to
go)
d455 Moving around
d4500 Walking short distances
d4501 Walking long distances
d4600 Moving around within
the home
d4601 Moving around within
8
MDS question PNS question PNS response options IF-Br area
I5003. How much difficulty do you have learning a new task
because of your health?
Making decisions
I4031. How much of a problem is coping with all the things
you have to do?
I5016. Because of your health, how much difficulty do you
have coping with all the things you have to do?
L. DE MOURA ET AL.
I4030. How much of a problem is handling stress, such as
controlling the important things in your life?
I4033. How much of a problem do you have with under- Communicating –
standing others using your usual language? receiving
I4032. How much of a problem do you have being under- Communicating –
stood using your usual language? producing
I5005. Because of your health, how much difficulty do you Conversation
have starting, sustaining and ending a conversation?
Discussion
Using communication
devices and
techniques
I4006 How much of a problem is engaging in vigorous activ-
ities for you, such as [add country specific examples]?
I4001. How much of a problem is standing up or sitting K19. Generally, what level of difficulty does ______have sit- 1. Unable; 2. A lot of difficulty; Changing and main-
down for you? ting down and getting up from a chair by him/herself? 3. Some difficulty; 4. No taining body
K16. Generally, what level of difficulty does _____ have difficulty position
lying down and getting up from the bed by him/herself?
I4002. How much of a problem is standing for long periods,
such as 30 minutes for you?
Carrying, moving and
handling objects
I4009. How much of a problem is raising a 2-litre bottle of
water from waist to eye level?
I4008. How much of a problem is doing things that require Fine hand use
the use of your hands and fingers, such as picking up
small objects or opening a container?
I5006 Because of your health, how much difficulty do you
have doing things that require the use of your hands and
fingers, such as picking up small objects or opening a
container?
I4003. How much of a problem is getting out of your home
for you?
I4007 How much of a problem is getting where you want to
go for you?
I5002. How much difficulty do you have moving around [N2 – Do you use a device like a cane, crutch, wheelchair, 1. None; 2. Mild; 3. Moderate;
because of your health? walker or other equipment to assist locomotion?] N3. 4. Intense; 5. Can't do it
Generally, which level of difficulty do you have getting
around?
I4004. How much of a problem is walking a short distance,
such as 100 meters, for you?
I4005. How much of a problem is walking a kilometer for
you?
K13. Generally, what level of difficulty does _____ have to 1. Unable; 2. A lot of difficulty; Moving around within
walk by him/herself in the house, going from one room 3. Some difficulty; 4. No the home
to another on the same level, like from the bedroom to difficulty
the living room and kitchen?
Moving around within
(continued)
Table 3. Continued
ICF code
buildings other than home
d4602 Moving around outside
the home and other
buildings
d470 Using transportation
d4701 Using private motorized
transportation
d4702 Using public motorized
transportation
d5 Self-care
d510 Washing oneself
d520 Caring for body parts
d5204 Caring for toenails
d530 Using the toilet
d5300 Regulating urination
d5301 Regulating defecation
d540 Dressing
d550 Eating
d560 Drinking
d570 Looking after one's
health
d5702 Maintaining one’s
health
d620 Shopping
d6300 Preparing simple meals
d6301 Preparing complex
meals
d640 Doing housework
d650 Caring for household
objects
d660 Assisting others
MDS question PNS question PNS response options IF-Br area
buildings other
than home
Moving around outside
the home and other
buildings
I4048. How much of a problem is using public or private K34. Generally, what level of difficulty does _____ have 1. Unable; 2. A lot of difficulty;
transportation? going out by him/herself, using transportation, like a bus, 3. Some difficulty; 4. No
subway, taxi, car etc.? difficulty
Using private motor-
ized transportation
Using public motorized
transportation
I4010. How much of a problem is keeping clean and/or get-
ting dressed?
K4. Generally, what level of difficulty does _____ have taking 1. Unable; 2. A lot of difficulty; Washing oneself
a shower by him/herself, including getting in and out of 3. Some difficulty; 4. No
the shower or tub? difficulty
Caring for body parts
I4013. How much of a problem is cutting your toenails?
I4012. How much of a problem is using the toilet? I5004. K7. Generally, what level of difficulty does _____ have using 1. Unable; 2. A lot of difficulty;
Because of your health, how much difficulty do you have the toilet by him/herself, including sitting down and get- 3. Some difficulty; 4. No
using the toilet? ting up from the toilet? difficulty
Regulating urination
Regulating defecation
K10. Generally, what level of difficulty does _____ have get- 1. Unable; 2. A lot of difficulty; Dressing
ting dressed by him/herself, including putting on socks 3. Some difficulty; 4. No
and shoes, closing the zipper, buttoning and difficulty
unbuttoning?
I4011. How much of a problem is eating? K1. Generally, what level of difficulty does _____ have eating 1. Unable; 2. A lot of difficulty; Eating
unassisted with the plate in front of him/her, including 3. Some difficulty; 4. No
holding a fork, cutting food and drinking from a cup? difficulty
Drinking
I4014. How much of a problem is looking after your health, K28. Generally, what level of difficulty does _____ have tak- 1. Unable; 2. A lot of difficulty; Looking after one's
eating well, exercising or taking your medicines? ing medicines by him/herself? 3. Some difficulty; 4. No health
difficulty
I4014. How much of a problem is looking after your health, K31. Generally, what level of difficulty does _____ have 1. Unable; 2. A lot of difficulty; Looking after one’s
eating well, exercising or taking your medicines? going to the doctor by him/herself? 3. Some difficulty; 4. No health
difficulty
K22. Generally, what level of difficulty does _____ have 1. Unable; 2. A lot of difficulty; Shopping
shopping by him/herself, buying, for example food, cloth- 3. Some difficulty; 4. No
ing or medicine? difficulty
Preparing simple
meals
Preparing complex
meals
I4037. How much of a problem do you have with getting Doing housework
your household tasks done? I5009. How much difficulty do
you have doing household tasks because of your health?
Caring for household
objects
I4043. How much of a problem do you have providing care Assisting others
or support for others? I5010. How much difficulty do you
have providing care or support for others because of your
health?
COMPARING POPULATION-BASED DATA
(continued)
9
Table 3. Continued
10

ICF code
d7202 Regulating behavior
within interactions
d7203 Interacting according to
social rules
d730 Relating with strangers
d7500 Informal relationships
with friends
MDS question PNS question PNS response options IF-Br area
Regulating behavior
within interactions
Interacting according
to social rules
I4027. How much of a problem is dealing with people you Relating with strangers
do not know?
I4028. How much of a problem is initiating and maintaining
friendships?
L. DE MOURA ET AL.

d760 Family relationships Family relationships

d770 Intimate relationships I4029. How much of a problem do you have with intimate Intimate relationships
relationships?
d779 Particular interpersonal I4026. How much of a problem is getting along with people
relationships, other speci- who are close to you, including your family and friends?
fied and unspecified I5015. Because of your health, how much difficulty do you
have getting along with people who are close to you,
including your family and friends?
d839 Education, other speci- I4046. How much of a problem do you have getting a formal Education
fied and unspecified (get- or informal education?
ting a formal or informal I4047. How much of a problem is getting things done as
education) required at school?
d840-d859 Work and Work and employment
employment
d8450 Seeking employment I4044. How much of a problem do you have with applying
for and getting a job?
d850 Remunerative I4045. How much of a problem is getting things done as Remunerative
employment required at work? employment
d860 Basic economic I4038. How much of a problem do you have with managing K25. Generally, what level of difficulty does _____ have tak- 1. Unable; 2. A lot of difficulty;
transactions the money you have? ing care of his/her finances by him/herself? 3. Some difficulty; 4. No
difficulty
d8700 Personal economic Personal economic
resources resources
d898 Major life areas, other I5012. How much difficulty do you have with your day-to-
specified (day-to-day work day work or school because of your health?
or school)
d910 Community life I5011. Because of your health, how much difficulty do you
have joining community activities, such as festivities, reli-
gious or other activities?
d920 Recreation and leisure I4039. How much of a problem do you have doing things for
relaxation or pleasure?
d9205 Socializing Socializing
d930 Community life I4040. How much of a problem do you have joining commu-
nity activities, such as festivities, religious or other
activities?
d950 Political life and I4042. How much of a problem did you have voting in the Political life and
citizenship last elections? I4041. How much of a problem do you citizenship
have engaging in local or national politics and in civic
organizations, such as [add country specific examples]?
IF-Br defines domains, and these are not stated as questions; the corresponding column in the table is called therefore IF-Br Area. MDS and IF-Br have standardized response options: 1 (none) to 5 (extreme), as well as
25 (total dependence), 50 (partial dependence on others), 75 (modified independence and 100 (total independence), respectively. Response options for these tools are therefore not included in the table. The IF-Br per-
spective is always performance. The MDS perspective is illustrated by the question and by the introduction to the corresponding module. All questions in module 4000 (e.g., I4021) are about performance, while all ques-
tions in module 5000 (e.g., I5003) are about capacity. The PNS questions in module N contain brief introductions to inform respondents that the Module is about their health. For each sub-section, respondents are told
which health areas the questions address. In addition, three specific questions ask about environmental factors (e.g., using hearing aids), and the text tells respondents to take assistive products (i.e., glasses and contact
lenses) into account. Therefore, module N is seen as addressing overall capacity, and the three questions which take into account the use of assistive products are interpreted as addressing performance. Cells in gray
mean that no question is available for the specific ICF code. All questions on functioning in each tool have been included in the table.
 COMPARING POPULATION-BASED DATA 11

Table 4. Comparing questions stated in the PNS Module Q (Chronic Diseases) to MDS Module 5000, health-conditions part.
Question MDS PNS
Do you have ___[condition]? X X
Have you ever been told by a doctor (or other health professional) that you have [condition]? X X
In the last __ [period given] have you been given any medication for [condition]? X X
Other treatment for diagnosis in [period given] X X
Taking drugs for condition in [period given] X X
Coverage of drug costs by health insurance or government programs X
Location of service/treatment for a condition – X
Extent to which diagnosis or its complications limit daily activities X
Age at the first diagnosis of [condition] X
Main reason for not making regular visits for health services for [condition] X
Hospitalization(s) because of [condition] X
Time of last test(s) for the condition (e.g., measuring blood sugar) X
Testing for condition-specific complications X
Completion of all doctor-ordered tests X
Reasons for not completing all tests X
Going to appointments with a specialist X
Reasons for not seeing the specialist X
Consistency of care (doctor’s follow-up regarding past exams) X
Questions in the PNS vary in number and content for each condition. For example, with respect to diabetes, respondents are asked when their last eye examination
was completed and report whether they have ever had bypass surgery to treat coronary heart disease. The MDS first asks, regarding all conditions addressed,
whether the respondent has a condition. If the person confirms, s/he is then asked if s/he has been diagnosed by a medical professional and whether or not s/he
has received medication and/or other treatment for the condition. The PNS requests information about the last time health care was received for a specified condi-
tion. The IF-Br does not address chronic conditions.

use in the revision process. Taking into account the ICF frame- Disclosure statement
work, these rules can be used as a guide to guarantee a balance
The authors report no declarations of interest.
between the questions and modules or components of a final
tool.
It is important to stress a limitation of the present study. Both ORCID
the MDS and the IF-Br are undergoing validation processes, and
Heleno Rodrigues Corr^
ea Filho http://orcid.org/0000-0001-
future changes in the questionnaires and modules are possible, so
8056-8824
that the linking and content comparison presented here might
need an update in the future.

Conclusions
Our study shows that applying the ICF Linking Rules to popula-
tion-based data originating from different sources, including ICF-
based tools, is feasible, meaningful and provides researchers and
stakeholders involved in decision-making with standardized and
straightforward comparisons. In the present case, results will influ-
ence the current revision of the disability module of the Brazilian
Health Survey PNS with the major goal of implementing a data-
collection strategy on disability that is CRPD conform and guaran-
tees interoperability with disability data from other sources in
Brazil, such as data coming from disability assessment for social
benefits.
Notes
1. “In this module I want to understand the kinds of problems
you experience in your life. By problems I mean not getting
things done in the way you want to or not getting them
done at all. These problems may arise because of your
health or because of the environment in which you live.
They may also arise because of the attitudes or behaviours
of people around you.”
2. “I have asked you many questions about kinds of problems
you experience in your life. The next questions ask about
difficulties you may have doing certain activities only
because of your HEALTH. Now thinking only about your
health, I want you to answer these questions WITHOUT
taking into account any help.”
3. Information not presented in tables.
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