Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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making , but also on aggregate levels (e.g., for performance measures, in cohort
studies for comparative effectiveness research, and registries that are used to deliver
on-market data) [ 10 – 14 ]. They have been applied in population-based monitoring
[ 10 – 14 ]. Furthermore, the use of disease-specifi c PROMs as (primary) outcome
parameters of clinical trials in drug development has evolved and is now demanded
by the European Medicines Agency [ 15 ] and the US Food and Drug Administration
[ 16 ]. PROMs have even been used for health-economic studies and hence allow to
substantiate health policy decisions [ 17 ]. PROMs are available from various web-
sites in a diverse manner (see Table 15.1 ).
Paper-based assessments of PROMs are usually easily handled by patients or
their accompanying relatives/friends, but their incorporation into clinical use, deci-
sion making, or scientifi c purposes is time-consuming [ 18 , 19 ]. Thus, paper-based

Table 15.1 Link list of ePROMs

Link Annotation

http://dgrh.de/klassifi kationskrite.html Provision of PDFs of PROMs for German-

speaking countries

http://www.medal.org Provision of multilanguage PROMs

http://www.nihpromis.org/?AspxAutoDetect

CookieSupport=1#2

System that allows assessments of PROMs

as health status (physical, mental, and social

well-being)

http://oml.eular.org/ Comprehensive database of validated

patient-reported instruments (indices,

questionnaires, scales, or others) used in

rheumatology (European League Against

Rheumatism)

http://www.rheumatology.org/Practice-

Quality/Clinical- Support/Quality-

Measurement/

Disease-Activity-Functional-Status-

Assessments

Quality measures the American College of

Rheumatology approved for use in clinical

practice and research

https://www.assessmentcenter.net/ An Internet site that provides a tool for

online data collection, includes instruments

from PROMIS (The Patient-Reported

Outcome Measurement Information System)

http://www.rheuma-online.de/selbsthilfe/

online-monitoring/online-monitoring-der-

rheumatoiden-arthritis/online- monitoring-

der-krankheitsaktivitaet-einer-chronischen-

polyarthritis-rheumatoiden-arthritis-der-

elektronische-disease-activity-score-online-

edas-online.html

Online self-monitoring rheumatoid arthritis

http://www.rheumatologie-berlin.de/aerzte/

assessment.html

German Online-Assessments, for example,
BASDAI, ASDAS, BASFI, and DAS28
http://www.meteorfoundation.com/ Free online tool to assess Rheumatoid
Arthritis Disease Activity in clinical practice
ASDAS Ankylosing Spondylitis Disease Activity Score, BASDAI Bath Ankylosing Spondylitis
Disease Activity Index, BASFI Bath Ankylosing Spondylitis Disease Functional Index, DAS28
Disease Activity Score 28

J. Richter et al.