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Domains of Health Important for People Living with PsA
Qualitative methodology (such as focus groups or individual in-depth interviews)
provides the opportunity to explore the perspective of those who experience the
disease, i.e., the patient’s perspective in detail. Such studies have yielded a wealth
of information in RA. In PsA, however, there have been few published qualitative
studies to date, although several are ongoing [ 45 , 49 , 50 ].
A systematic literature review reported on 11 studies assessing impact of PsA
from the patient’s perspective [ 45 , 51 ]. Impact of PsA was shown to be wide-
reaching. The most frequently reported dimensions of health were mainly related
to the consequences and societal aspects of the disease (i.e., ability to work, social
participation, and leisure) followed by physical aspects (i.e., functional capacity;
pain; fatigue) and emotional aspects (such as coping mechanisms; emotional
problems such as anger, anxiety, fear; and embarrassment and shame due to
appearance).
Two questionnaires have been developed specifi cally for PsA and used qualita-
tive methods in their elaboration. In the elaboration of the PsA Impact of Disease
(PsAID) [ 52 ], 16 domains of health that were considered important by patients were
identifi ed (Table 5.4 ). Similarly, the development of the PsA Quality of Life
(PsAQoL) questionnaire yielded domains of health that could be categorized into
four main experiences: reaction to diagnosis, life changes, adaptation and accep-
tance, and concerns for the future (Table 5.4 ) [ 53 ]. These included as expected pain
or skin disease, but also other domains, such as fatigue, coping, emotional, and
social problems.
The domains of impact important for patients should be taken into consideration
particularly in PsA where quality of life instruments should refl ect both rheumatic
and dermatological impact on patients [ 49 ].
PROMs Specifi cally Developed for PsA
There are very few questionnaires that have been developed specifi cally for PsA; we
will review two of them here.
The PsAQoL Questionnaire
The Psoriatic Arthritis Quality of Life ( PsAQoL) assesses quality of life defi ned as
the extent to which needs are fulfi lled and refl ects impact from the perspective of the
patient [ 53 ]. Its content was derived from unstructured, qualitative interviews con-
ducted with patients with PsA, which generated a 51-item questionnaire. Face and
content validity were assessed by fi eld test interviews with another sample of PsA
patients. Then a postal survey was conducted and the resulting analysis led to a
U. Kiltz et al.