300
because each scale needs to be devel oped and validated independently [ 96 ].
Moreover, the various PROs available make it diffi cult to compare results between
studies [ 97 ]. In an attempt to fi nd a solution for this problem, the National Institute
of Health (NIH) began developing the Patient-Reported Outcomes Measurement
Information System (PROMIS) , starting in 2004 [ 98 ]. Their goal was to advance
medical research by creating a comprehensive collection of item banks that are able
to measure PROs and can be applied to a variety of chronic conditions [ 98 ].
The core areas addressed in the PROMIS are physical, social, and emotional
health; fatigue; and pain. These areas refl ect HRQoL. The PROMIS item banks are
widely available, free, simple to use, and can be administered electronically and
through Computerized Adaptive Testing (CAT). CAT works by selecting questions
individualized to a patient based on their previous answers to gather data using a
minimum number of questions while still maintaining precision [ 98 ]. The statistical
method used to determine which question should be asked next is known as Item
Response Theory (IRT). In contrast to PROMIS, scales such as the HAQ require
patients to answer all questions, despite lack of relevance or applicability. In addi-
tion to the PROMIS item banks that can be administered through CAT, there are also
static versions available.
Another adaptable tool that is compatible with the PROMIS network is the
Functional Assessment of Chronic Illness Therapy (FACIT) measurement system.
The FACIT consists of a set of questionnaires to determine the HRQoL in chronic
conditions by measuring physical, social/family, emotional, and functional well-
being [ 99 ]. Like PROMIS, the FACIT utilizes CAT to individualize questions to a
specifi c patient [ 99 ]. Unlike PROMIS, however, the FACIT tends to be more
disease- specifi c, rather than generic [ 96 ].
The PROMIS has been validated in a variety of diseases and has been found to
be more precise than existing measures [ 96 , 100 – 102 ]. In 2012, fi ndings by Khanna
et al. further supported the construct validity and feasibility of CAT-administered
PROMIS in 11 health domains for SSc [ 103 ]. When administered in an SSc clinic
with support staff, patients took an average time of up to 1.9 min to complete the
CAT question bank, highlighting its effi ciency and ease of use [ 103 ]. The generic
global PROMIS-29 static scale and FACIT-dyspnea questionnaire are validated in
SSc [ 97 , 104 ]. In these studies, it was suggested that these tools may be of benefi t
over previously used instruments because of their ease of use and availability [ 97 ,
104 ]. However, for the evaluation of the functional impact of skin disease, longer
PROMIS forms may be required [ 97 , 104 ].
As we continue to realize the benefi ts of PROMIS and FACIT, further validation
and calibration of these tools is important in SSc to better capture diffi cult to mea-
sure disease traits [ 96 ]. By using fl exible and adaptive tools such as PROMIS and
FACIT, we are able to more accurately capture PROs. Wider use of the PROMIS
and FACIT systems can help standardize results for interstudy and interdisease
analysis [ 96 ]. Although the use of CAT requires a computer, the benefi ts of this
available and easy-to-use technology make it an appealing option to improve both
translational research and clinical care.
R.E. Pellar et al.