Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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PROMs are mostly regarded as costly and ineffi cient [ 20 ]. Even if all questionnaire
items are fi lled out, scores are usually hard to calculate without a (special) pocket
calculator, and can therefore barely be used in clinical practice when fast decision
making is needed [ 1 ]. Among other reasons the paper-based assessments’ inherent
administrative burden is the leading reasons found for physicians’ reluctance on
PROMs’ routine assessments [ 2 , 21 – 25 ].
In the last decades, the technological facilities changed dramatically. Thus, elec-
tronic assessments of PROMs (so-called ePROMs) have been realized and their evalu-
ations have been performed (see later). Electronic health/medical records (EHR/EMR)
and (Web-based) applications running on various hardware devices have been devel-
oped. They include ePROMs as well as other care quality measures. In addition,
ePROMs have been incorporated into computer applications that gather data for regis-
tries [ 12 , 26 ]. The next generation of mobile information technology (IT)-supported
registers has yet been positively noticed as they allow patients themselves to make
real-time adjustments to their treatments and lifestyle, for example, by fi lling ePROMs
[ 26 ]. Recently, even an Internet platform has been implemented and used for adaption
and validation of an ePROM [ 27 ]. In addition, there is an ongoing discussion on the use
of social media to collect data to support the content validity of patient-reported out-
come instruments in drug development processes [ 28 ]. These new developments and
opportunities refl ect the fundamental change from paper-based PROMs to ePROMs.


Advantages of Electronic Data Capture and ePROMs

The technological infrastructures facilitate real-time and long-term systematic
patient-centered data collection as integral components of care [ 5 , 29 , 30 ]. Today’s
information technologies allow intelligent orchestration of PROMs data collection,
analyses, and reporting and thus provide a wide array of exciting challenges and
opportunities not only for routine patient care but also medical research [ 31 ]. Various
(non)pro p rietary applications simplify data acquisition and accelerate information
transfer between patients and physicians by eliminating intermediate data collection
and processing steps (e.g., double data entry), increase fl exibility of data capture
(e.g., frequencies and locations), facilitate clinical decisions, and can thus improve
the effi ciency of clinical workfl ow [ 30 , 32 – 37 ]. Changing specifi c personal or dis-
ease-specifi c needs, treatment regimens, or phases might require different assess-
ments. ePROMs might simplify context-based customization of the assessments
[ 38 ]. They allow real-time fl agging of important, clinically relevant symptoms.
Frequent monitoring and reviewing of patient-centered issues and needs is enabled;
thus, ePROMs offer an ability to enhance clinical care and quality assurance [ 29 ,
33 ]. Multiple follow-ups of defi nable time periods may be seen at a glance and/or
compared with control groups, allowing adaptation of treatment plans and processes
without the need for additional staff or equipment [ 39 , 40 ]. As ePROMs improve the
accuracy of data collection of symptoms indicating poor conditions and outcomes,
they might even help to triage patients who need more extensive care, for example,
in terms of evaluation and (non)medical interventions [ 2 , 20 , 30 ]. Electronic


15 Electronic Patient-Reported Outcome Measures (ePROMs) in Rheumatology

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