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Concepts Important to People with Psoriatic
Arthritis are not Adequately Covered by Standard
Measures of Functioning Tanja A. Stamm1, Valerie
Nell1, Mona Mathis1, Michaela Coenen2, Daniel
Aletaha1, Alarcos Cieza2, Gerold Stucki2,3,
William Taylor4, Josef S. Smolen1, Klaus P.
Machold1 1 Vienna Medical University, Department
of Internal Medicine III, Division of
Rheumatology 2 ICF Research Branch of the WHO
Collaborating Centre for the Family of
International Classifications at the German
Institute of Medical Documentation and
Information (DIMDI), Munich, Germany 3
Department of Physical Medicine and
Rehabilitation, Ludwig-Maximilian University,
Munich, Germany 4 Rehabilitation Teaching and
Research Unit, Wellington School of Medicine
Health Sciences, Department of Medicine, New
Zealand
Objective To explore whether the concepts
important to patients with Psoriatic Arthritis
(PsA) are covered by self-report instruments
assessing functioning.
Results Thirty-one patients participated in 6
focus groups. The following 9 instruments were
included in the present analysis AIMS-2-SF,
BASDAI, DASH, DLQI, DFI, HAQ, HAQ-S, PsAQoL and
SF-36. Of the 54 concepts which were identified
in 590 meaning units in the transcribed data, 19
concepts (35) were not covered by any of the
instruments. Of these 19 concepts, 11 concepts
which were linked to the ICF component
environmental factors were not covered by any of
the instruments, while all concepts linked to the
ICF component activities and participation were
covered by at least one of the instruments (but
no single instrument covered all concepts).
Methods We conducted a qualitative focus group
study with PsA patients about their problems in
daily functioning. Focus groups were
tape-recorded and transcribed verbatim. The
transcribed texts were divided into meaning units
and the concepts contained in these meaning units
were extracted. Self-report instruments assessing
functioning in PsA were identified in a
structured literature search. Using the
International Classification of Functioning,
Disability and Health (ICF) as a common frame of
reference, we determined for each concept
identified in the focus groups whether or not it
was covered by each of the instruments.
Conclusion The impact of environmental factors,
own attitudes towards people with health problems
and loss of leisure time may represent important
aspects addressing participation which are
currently not covered in the instruments
assessing functioning in PsA.
Concepts from the focus groups in the components
body function and structures and personal factors
in comparison with the instruments.
Concepts from the focus groups in the component
environmental factors in comparison with the
instruments