Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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period is not specifi ed in the questionnaire. Responses to the NEI- VFQ scores can
range from 0 to 100, with lower scores indicating more problems or symptoms.
Subscale scores are assessed for general vision, ocular pain, near vision, distance
vision, social functioning, mental functioning, role functioning, dependency, driving,
color vision, and peripheral vision, as well as an overall score. Limitations of the
NEI-VFQ-25 for assessing QOL in patients with dry eyes are that it is not disease-
specifi c, needs further validity and reliability testing in a dry eye population, lacks a
specifi ed recall period, and requires 10 min to administer the qu estionnaire [ 53 ].
The Texas Eye Research and Technology Center (DEQ) is a 33-item question-
naire based on the original dry eye questionnaire that adds several components to
the original dry eye questionnaire, including two questions on the disease effect on
QOL [ 48 , 54 ]. The questionnaire has undergone some validity testing and can dis-
criminate between normal patients and patients with moderate dry eyes. Limitations
of the questionnaire for measuring QOL in patients with dry eyes include the need
for further test–retest reliability testing. In addition, only a small portion of the
questionnaire is dedicated to QOL measures [ 55 ].
The Ocular Surface Disease Index (OSDI) [ 37 ] (provided by Allergan, Inc.,
Irvine, CA) was used to quantify the specifi c impact of dry eye on VTHRQ. This
disease-specifi c questionnaire includes three subscales: ocular discomfort ( OSDI -
symptoms), which entails symptoms such as gritty or painful eyes; functioning
(OSDI-function), which measures limitation in performance of common activities
such as reading and working on a computer; and environmental triggers (OSDI-
triggers), which measures the impact of environmental triggers, such as wind or
drafts, on dry eye symptoms.
The questions are asked with reference to a 1-week recall period. Possible
responses refer to the frequency of the disturbance: none of the time, some of the
time, half of the time, most of the time, or all of the time. Responses to the OSDI
were scored using the methods described by the authors [ 55 ]. Subscale scores were
computed for OSDI symptoms, OSDI function, and OSDI triggers, as well as an
overall averaged score. OSDI subscale scores can range from 0 to 100, with higher
scores indicating more problems or symptoms.
The Impact of Dry Eye on Everyday Life (IDEEL) [ 57 ] is another disease- specifi c
patient-reported outcomes (PRO) questionnaire for the assessment of the burden of
dry eye on patients. The 57-item IDEEL questionnaire for the assessment of dry eye
impact comprises three modules: dry eye symptom-bother; dry eye impact on daily
life including impact on daily activities, emotional impact, impact on work; and dry
eye treatment satisfaction, which includes satisfaction with treatment effectiveness
and treatment-related bother/inconvenience. The psychometric analysis results indi-
cated that the IDEEL met the criteria for item discriminant validity, internal consis-
tency reliability, test–retest reliability, and fl oor/ceiling effects.
A review [ 55 ] carried out to analyze the currently available dry eye question-
naires in relation to the vision-related QOL in patients with dry eye disease revealed
that the IDEEL , for its extensive development process and multiple QOL measures,
offers a more thorough assessment of the effect of eye dryness on quality of life for
clinical trials, whereas the OSDI may be the more convenient option for clinical use


12 PROMs for Sjögren’s Syndrome

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