Introduction
Patient-reported outcomes (PRO) refer to any report of the health status
of the patient’s health obtained directly from the patient without any
interpretation by others
\cite{administration2009}. The key elements of a
PRO are that the outcome should be self-reported, and measurable in
absolute or relative terms. Standardized measures to collect information
on PRO are called patient-reported outcome measures (PROM). This
umbrella term, in turn, can include measures that focus on understanding
the quality of life (QoL), health-related quality of life (HRQoL),
symptom burden (SB), and functioning
\cite{Weldring2013}. Both generic measures, that are applicable across a wide range of normal population, as well
as disease-specific measurement instruments are currently available.
Though originally developed as a research method, increasing emphasis
has been placed on the routine collection of PROs during clinical
encounters \cite{Black2013,Nelson2015}. For
diseases like cancer where treatment is often toxic
\cite{Henry_2008}, distressing \cite{Carlson_2004}, costly
\cite{Knight_2018}, and time-consuming,
integration of PROMs in routine clinical care makes sense as patients
often have unmet needs \cite{Sanson-Fisher2000}.
The National Health Services of the UK has implemented the routine
collection of PROMs in some surgical disciplines as a method to assess
the quality of care \cite{Kingsley_2017}. In
a recent publication, Porter et al have identified several key
considerations for implementation of PROMs in routine clinical practice
\cite{Porter_2016}. It has been suggested that both the availability of a feedback system, where results of the PROM are
available during the clinical interaction, as well as appropriate
training of professionals in the interpretation of scores are vital
\cite{Porter_2016}.
Over the past decade, efforts have been made to administer PROM
electronically. Advantages of electronic PROM (e-PROM) administration
include the ability to present questions with appropriate conditional
(skip) logic, reducing faulty and missing answers, implementation of
computerized adaptive testing, integration of media like audio and video
along with the questions for elaboration as well as integration with
voice-based response systems which can widen the scope of application to
populations with limited literacy
\cite{Coons_2014}. Furthermore, e-PROM
systems allow data to be visualized in real-time at the time of clinical
encounter and can be configured to provide information on time trends as
well as comparisons with peer groups. Two meta-analyses have concluded
that paper and electronic administration of PROM are psychometrically
equivalent \cite{Gwaltney_2008,Rutherford_2015}.
Several commercial and proprietary systems are available for e-PROM
administration e.g. Assessment Center (NIH) \cite{center}, Ayva (Bravado Health)
\cite{health}, EPIC (EPIC Systems
Corporation) \cite{epic}, Patient
IQ (PatientIQ) \cite{patientiq}, CHES platform(Evaluation Software Development (ESD)) \cite{platform} etc. An open-source project called openPRO
also exists, but has seen limited development over the past few months
\cite{goinvoopenpro}.
In the current manuscript, we describe the design and development of an
open-source tool to capture e-PROMs and display them to physicians at
points of encounter. The design choices and underlying open source
technologies used are described. Preliminary results of user experience
testing are also presented.