315Another generic tool is the Euro-QOL [ 26 ]. The tool comprises fi ve domains:
mobility, self-care, usual activities, pain/ discomfort, and anxiety/ depression as
well as a global health status (using a 0–100 mm visual analogue scale). In concor-
dance with the WHOQOL questionnaire, the Euro-QOL gives a single global score,
in addition to individual domain scores. The Euro-QOL was assessed in patients
with pSS in comparison to SF-36. Results revealed comparable reduction in the
HRQOL scores in both tools [ 27 ]. In another study, a group of researchers from
Sweden reported reduction of QOL in patients with pSS using the Gothenburg
Quality of Life Instrument [ 28 ].
Disease-Specifi c Tools
For any given area of health, condition-specifi c instruments may have greater clini-
cal appeal due to incorporation of content specifi c to the particular conditions, and
the likelihood of increased responsiveness to interventions. In view of the fact that
there is no single measure that can serve as a “gold standard” in all patients suffer-
ing from infl ammatory arthritic conditions, mutual index of several measures has
been recommended for assessment of disease activity and monitoring response to
therapy. The most widely used indices in RA are the ACR Core Data Set, disease
activity score (DAS-28), whereas ASDAS is commonly used in ankylosing spondy-
litis and SLEDAI for lupus patients [ 29 ]. In SS, the scenario might differ to some
extent as there is no composite measure like the other chronic infl ammatory condi-
tions; hence, specifi c questionnaires were developed specifi cally to address the most
important disease manifestations, namely dryness in the eye and mouth as well as
fatigue. This is discussed in the following section.
Dry Mouth
Dryness of the oral mucosa and hyposalivation put SS patients at high risk for poor
oral health. Therefore, maintaining oral health is a signifi cant issue for this popula-
tion. Patients can also experience changes in the composition of saliva that increases
the susceptibility t o dental caries and periodontal disease, increases incidence of
oral candidiasis and ulceration, causes changes in taste sensation, and complicates
wearing dentures. Patients frequently experience diffi culty chewing and swallowing
food, diffi culty speaking, and suffer embarrassment or self-consciousness in social
situations as a result of xerostomia. For SS patients, a number of questionnaires
were developed focusing mainly on the oral and ocular symptoms. The Sicca
Symptoms Inventory [ 30 ] assesses both ocular and oral dryness as well as other
sicca symptoms. The Oral Health Impact Profi le (OHIP) [ 31 ] was endorsed as a
disease-specifi c HRQOL tool. This was attributed to its measurement of both oral
sicca symptoms and the social impact of these symptoms. Furthermore, the tool
measures aspects of quality of life directly related to oral health and function
12 PROMs for Sjögren’s Syndrome