Assessment of the rheumatological patient

Functional assessment in
rheumatic diseases

Whats new?
There has recently been a shift in the focus of patient
outcomes towards the inclusion of some method for
allowing patients to assign relative values to different
activities and outcomes or to specify the activities or
limitations of most importance to them

Alison Carr

These approaches are being developed in direct

partnership with groups of patients and are still being
evaluated but may result in measures of physical
function that are more relevant to patients and also
more responsive to change

Abstract
Standardized assessments of general physical function (e.g. walking unaided) and the ability to perform tasks of daily living are widely used
in rheumatology, both in clinical practice to assess disease severity and
progression, and in clinical research to evaluate the effectiveness of
treatment. Some measure of physical function is now included in the
core data set recommended for inclusion in all clinical trials in rheumatology. Several different methods and tools are available for measuring
function and most have been extensively validated for use in research.
These vary from directly observed performance of activities such as walking, sitting and standing, to patient-completed questionnaires of the
perceived difficulty they experience in performing daily living activities
or undertaking roles. This article reviews the different approaches used,
together with their advantages and disadvantages.

Status in Rheumatoid Arthritis (ACR classification1 Table2)

depend upon physician observation and examination. Using
a set of predetermined criteria, physicians classify patients
functional status. One disadvantage of this approach is that it
relies on the ability of the physician to accurately observe and
interview patientsin order to classify them accurately. Another
disadvantage is that there are only four levels of functioning
within the classification system so its ability to detect changes
at an individual clinical level will be limited. Nevertheless, the
criteria are quick and easy to use and may be of value in large
scale epidemiological studies to classify the consequences of
rheumatic disease.

Keywords physical function; disability; outcome measures; patient outcomes; arthritis; activities of daily living

Electronic measures of performance: electronic activity monitors

can be attached to the patient to provide information about the
level of activity achieved in his or her usual daily activities. They
place measurement of functional performance in the patients
usual social context, thereby providing a more meaningful measurement than clinic-based performance assessments.

Measures of physical function

Measures of physical function can be based on observed performance or patient reports. Table 1 lists some of the most widely used
functional assessments in rheumatic diseases. Some are specific to
particular regions such as the upper or lower limb or the hand. Others provide general assessments based on activities of daily living
and are applicable across a range of rheumatic diseases.

Questionnaire measures: whether individuals are physically

disabled is influenced by many factors such as the sort of home
they live in, their work environment, whether they have help
at home, their mood, their coping strategies and many other
environmental, social and psychological factors. Patient-reported
measures of function give an assessment of functional ability that
reflects these influences. Patient-reported measures are generally
questionnaire-based. Some focus on difficulty performing movements or daily living tasks related to a particular joint or region;
for example, WOMAC assesses hip and knee joint function, AUSCAN hand function and DASH upper limb (shoulder and arm)
function. Others (e.g. HAQ, AIMS)2 are more general measures of
disability that can be used in a range of rheumatic conditions.
A criticism of questionnaire measures is that, by asking every
patient the same question and limiting the responses to a predetermined scale, they include items that are not relevant to some
patients (e.g. questions about stairs when the patient lives in a
bungalow) and assume that each activity is equally important to
every patient. This reduces their validity and sensitivity when
applied to individual patients. For example, the ability to get in
and out of a car is likely to be of more importance and relevance
to a taxi driver than to an elderly, housebound woman whose
shopping is done by someone else.

Observed measures (e.g. timed walk, step test) have the advantage of being measures of performance, largely independent of
patients perceptions or interpretations of disability. However,
this lack of context means that they are not necessarily good
measures of functional disability (i.e. how disabled the patient
is in performing daily living tasks or fulfilling his or her role).
They measure whether patients are capable of walking a certain
distance or climbing stairs, rather than whether they actually do
this in their own social environment.
Classification systems such as the American College of Rheumatology Revised Criteria for the Classification of Global Functional

Alison Carr PhD is Non-clinical Special Lecturer in Musculoskeletal

Epidemiology at the University of Nottingham, UK. She qualified
from the University of London and the London School of Hygiene
and Tropical Medicine. Her research interests include outcome
measurement in clinical research and practice. Conflicts of interest:
none.

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Assessment of the rheumatological patient

Patient-reported functional assessments used in rheumatic diseases

Rheumatoid arthritis
Stanford Health Assessment
Questionnaire (HAQ) (Disability
Index)
Individually Weighted HAQ
Osteoarthritis
Western Ontario and McMaster
Universities Osteoarthritis Index
(WOMAC)
AUSCAN (osteoarthritis hand
index)
Indices of Clinical Severity
(Lesquene) (for hip and knee
osteoarthritis)
Ankylosing spondylitis
Bath Ankylosing Spondylitis
Functional Index (BASFI)
Health Assessment
Questionnairefor
Spondyloarthropathies (HAQ-S)
Back pain
Rowland Morris Pain
Questionnaire
Oswestry Low Back Pain
DisabilityQuestionnaire
Upper limb
Disabilities of Arms, Shoulder
andHand (DASH)

Content

Source

Difficulty in activities of daily living involving upper

andlower limb

Arthritis Rheum 1980; 23: 13745.

Content as HAQ, but individual ratings of

importanceattached to each activity

Ann Rheum Dis 2001; 60: 928.

Pain in activities involving lower limb

Stiffness in the morning and after rest
Difficulty in activities of daily living involving lower
limbfunction
Pain in hand functions
Morning stiffness in hands
Difficulty in activities of daily living involving hand
Pain in activities involving hip and knee movement
Maximum distance walked
Difficulty in activities of daily living involving lower
limb

J Rheumatol 1988; 15: 183340.

Difficulty in activities of daily living

Difficulty in home and work roles
Stiffness
Difficulty in activities of daily living involving spine
mobility

J Rheumatol 1995; 22: 740.

Intensity of pain
Limitation of activities of daily living
Intensity of pain
Limitation of activities of daily living
Limitation of social activities

Spine 1983; 8: 1414.

Physical function relating to upper limb

Severity of symptoms
Social/role function

www.iwh.on.ca
Am J Ind Med 1996; 29: 6028.

Osteoarthritis Cartilage 2000; 8: (Suppl. A):

S3840.
Semin Arthritis Rheum 1991; 20: (Suppl. 2):
4854.

J Rheumatol 1990; 17: 946.

Physiotherapy 1980; 66: 271.

Table 1

Individualized questionnaire measures measures that take

account of the individual relevance and importance of activities
include MACTAR3 (which assesses patients preferences for specific functional outcomes) and an adapted version of the HAQ that
incorporates individual patients weighting of the importance of
each activity/disability. The ability to capture information about
function that is directly applicable to individual patients is particularly valuable when assessing function in clinical practice.

ACR Revised Criteria for classification of global

functional status in rheumatoid arthritis
Class I
Class II
Class III

Class IV

Completely able to perform usual activities of daily

living (self-care, vocational and avocational)
Able to perform usual self-care and vocational
activities but limited in avocational activities
Able to perform usual self-care activities but
limited in vocational activities and avocational
activities
Limited in ability to perform usual self-care,
vocational and avocational activities

Using functional assessments

Research
Functional assessments, particularly questionnaire measures, are
widely used in clinical research in rheumatology; most measures
were specifically designed for this purpose. In research, in which
the aim is usually to compare groups of patients rather than to

Adapted from Arthritis Rheum 1992; 35: 498502.1

Table 2

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Assessment of the rheumatological patient

measure change within an individual patient, standardized measures (e.g. the original HAQ, WOMAC, AIMS) have been preferred over individualized measures because of the perception
that the data are easier to analyse. A major disadvantage of any
patient-reported measure is that it provides no clear idea of what
constitutes an important change in function. Thus, a difference
in reported function between two groups participating in a clinical trial may be statistically significant but may not be detectable
by the patient, or, if detectable, may not be large enough for the
patient to consider one treatment more effective than another.

perform activities) may indicate worsening functional disability

over time, but patients interpretation of that loss of function is
influenced by what they need to do and what they expect to happen to them (in response to disease or treatment and with increasing age). Evidence from recent qualitative studies in RA indicates
that patients recalibrate their assessment of function in response
to disease activity and duration. This change in patients internal
evaluation of function over time is termed response shift. It can
occur as the result of:
changes in the patients internal standards of measurement
(recalibration of the internal scale such that a HAQ score
of 2.8 in early disease (3 represents severe disease) may
equate to a score of 1.6 several years later because age and
disease duration have changed the patients expectations of
function)
redefinition of the outcome by the patient (e.g. what constitutes disability, function changes over time).
Several statistical methods for overcoming response-shift
problems have been proposed and will be of use in research.6
Methods that might help to address the problem in clinical
practice include then-tests. This technique involves asking
patients to complete their functional measure at the first
consultation. At subsequent consultations, patients are asked
to complete the functional measure as before, but are also asked
to make a retrospective assessment of their functional status
at their previous consultation using the same questionnaire.
Any difference between the original baseline measure and
the retrospective measure is assumed to represent response
shift. The main problem with this method is recall bias.
An alternative for clinical practice is the use of individualized measures (e.g. MACTAR, Individually Weighted HAQ),
which enable assessment of recalibration and, to some extent,
reconceptualization.

Clinical practice
There are three potential uses for functional measures in routine
clinical practice:
screening for specific functional problems that might be amenable to treatment or help from social services
informing clinical decision-making about the activity and
severity of disease and the most appropriate interventions
monitoring the effects of care.
Despite these potential advantages, functional measures are not
used universally in routine clinical practice. Several barriers to
their use have been identified, including concerns about cost,
feasibility and clinical relevance, suspicion that some measure
aspects of health outside the traditional remit of medical care,
and problems interpreting the results in a clinically meaningful
manner. When functional measures are used in rheumatology, it
is generally for longitudinal monitoring of disease and treatment
effects.
Many questionnaire-based measures have resource and
time implications that make them impractical for clinical use;
for example, questionnaires may be time-consuming, and
some patients may require help in completing them because
of problems with language or literacy or difficulty holding
a pen, or because they have forgotten their reading glasses.
Even when the questionnaire is relatively brief and can be
completed by the patient, it may not be easy to score it in a
clinical setting, and lack of familiarity with scoring systems
makes it difficult to interpret the scores obtained. The inclusion
of items of no relevance or importance to individual patients
(see above) limits the usefulness of these measures in iden
tifying specific problems of the patient and in informing clinical decision-making.
Measures that have been designed specifically for clinical use
can be used as the basis for the clinical consultation and in identifying patients priorities for treatment outcomes. An example is
the Disease Repercussion Profile (DRP),4 which assesses function in the context of patient-perceived handicap. In a recent trial
in 200 patients with rheumatoid arthritis (RA), patients whose
treatment was based on their results from the DRP exhibited
similar treatment outcomes (in terms of disease control) over
a 12-month period but were significantly more satisfied with
their treatment than those who underwent a more traditional
consultation.5

References
1 Hochberg M C, Chang R W, Dwosh I, Lindsey S, Pincus T, Wolfe F.
The American College of Rheumatology 1991 revised criteria for
the classification of global functional status in rheumatoid arthritis.
Arthritis Rheum 1992; 35: 498502.
2 Meenan R F, Mason J H, Anderson J J et al. AIMS2: the content and
properties of a revised and expanded Arthritis Impact Measurement
Scales health status questionnaire. Arthritis Rheum 1992; 35: 110.
3 Tugwell P, Bombardier C, Buchanan W W et al. The MACTAR Patient
Preference Disability Questionnaire: an individualised approach
for assessing improvement in physical disability in clinical trials in
rheumatoid arthritis. J Rheumatol 1987; 14: 44651.
4 Carr A J. A patient-centred approach to evaluation and treatment in
rheumatoid arthritis. Br J Rheumatol 1996; 35: 92132.
5 Carr A J, Hughes R A, Stowers K, Sheasby J, Wright C, Barlow J.
Disease management based on individual patient preferences and
priorities: a randomised controlled trial in rheumatoid arthritis.
Arthritis Rheum 2001; 44: S390.
6 Schwartz C E, Sprangers M A G. Methodological approaches for
assessing response shift in longitudinal health-related quality of life
assessment. Soc Sci Med 1999; 48: 153148.

The problem of measuring and interpreting change over time

One of the greatest challenges in using questionnaire-based measures of function is how to interpret changes in scores over time.
Measures of performance (whether and how easily patients can

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Assessment of the rheumatological patient

Further reading
Bellamy N. Musculoskeletal clinical metrology. Lancaster: Kluwer
Academic, 1993.
(A comprehensive guide to all forms of clinical measurement in
rheumatology, with practical tips for clinical practice and research;
contains reproductions of some functional measures.)
Delamothe T, ed. Outcomes into clinical practice. London: BMJ
Publishing Group, 1994.
(Includes interesting examples of how outcome assessment can be
incorporated into routine clinical practice.)
Higginson I J, Carr A J. Measuring quality of life: using quality of life
measures in the clinical setting. BMJ 2001; 322: 1297300.
(Practical, step-by-step advice on how to incorporate questionnaire
measures into routine clinical practice.)
McDowell I, Newell C. Measuring health: a guide to rating scales and
questionnaires. 2nd ed. Oxford: Oxford University Press, 1996.
(A rsum of rating scales, including descriptions, a review
of their development and an assessment of their validity and
reliability).

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Practice points
Functional assessments in rheumatic diseases can take the
form of observations of performed activities or patient selfreports (questionnaires) of difficulty performing activities of
daily living
Such assessments have traditionally been used in research,
but can also provide useful data in clinical practice to
evaluate the effectiveness of treatment or guide clinical
decision-making
Using functional measures in clinical practice requires careful
consideration of issues such as feasibility, interpretability of
scores and how the data are to be used
One of the greatest challenges of measuring function over
time is response shift changes in the way patients perceive
and calibrate functional disability in relation to age, duration
and activity of disease, and expectations

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2006 Elsevier Ltd. All rights reserved.