NcXHF

PATIENT-REPORTED OUTCOMES IN ONCOLOGY
rum (NQF) convened workshops of stakeholders and provided
a report defıning the concepts. The NQF report also
provides a detailed pathway for the development of PRO-
PMs starting with PROs and working through the PROMs. 13
The Quality of Care Committee of the American Society of
Clinical Oncology (ASCO) has reported on their efforts to
develop outcome measures for pain associated with bone metastases
and postchemotherapy nausea (Table 1). 14 As these
measures work through the delivery of health care, payers
will likely to take an interest in measures that correlate to
drug use. Although PROs have been used for drug approval
in the United States, their utility in drug cost and reimbursement
decisions has not been tested. 15,16 As better measures
and systems are developed, the E.U. experience may provide
useful insight. 17
HOW AND WHY ARE ONCOLOGISTS USING PROS IN
CLINICAL PRACTICE?
A variety of PROMs are available and the last few years have
seen many of the paper-based tools translated into electronic
versions, resulting in dozens of academic and commercially
available electronic PRO (ePRO) systems. A comparison of 33
systems in clinical use revealed the need to consider a variety of
features in selecting a solution, including ease of use by patients
and providers, ability to change assessments, interpretation of
results, and electronic health record integration. 18
A review of ePROs in use in oncology clinics provided examples
of their implementation. 19 Two examples of academic
systems are noted here: Patient Viewpoint from Johns
Hopkins, and Symptom Tracking & Reporting (STAR) Prostatectomy
Project from the Memorial Sloan Kettering Cancer
Center (MSKCC; Table 2). These systems can be used to
manage both general patient populations and very specifıc
goals for well-defıned patient populations. In both systems,
patients were able to fıll out surveys via the website and monitor
their progress over time, and clinicians received reports
via the electronic medical record. Interestingly, the MSKCC
project also provided benchmarks for patients relative to others
in this narrow group. Additional features of other systems
KEY POINTS
TABLE 1. Oncology-Specific PRO-PMs Developed by
the ASCO Quality of Care Committee for Pilot
Testing
Pain
Postchemotherapy Nausea
PRO Pain Nausea
PROM Brief Pain Inventory, worst PRO-CTCAE nausea items
pain
PRO-PM Proportion of patients with
radiographically detected
metastatic disease in a
given practice with worst
pain of 4
Proportion of patients receiving
moderately or highly emetogenic
systemic cancer treatment who
experience moderate or worse
nausea within a week
Abbreviations: PRO, patient-reported outcome; PM, performance measure; PROM, patientreported
outcome measures; CTCAE, Common Terminology Criteria for Adverse Events.
included sending alerts to clinicians and/or providing educational
material or care advice to patients. 19
Although the potential benefıts of PROs in general practice
are clear, a recent review of 24 controlled clinical trials suggests
that additional work is necessary to translate PROMs
into clinically meaningful and actionable tools. 20 The authors
evaluated three types of outcomes from these trials: patient
outcomes, health service outcomes, and processes of care,
which was the most frequently studied in the trials. The authors
came to the following conclusion:
“The routine use of PROMs increases the frequency of discussion
of patient outcomes during consultations. In some
studies, PROMs are associated with improved symptom
control, increased supportive care measures, and patient satisfaction.
Additional effort is required to ensure patient adherence,
as well as additional support to clinicians who will
respond to patient concerns and issues, with clear system
guidelines in place to guide their responses. More research is
required to support PROM cost-benefıt in terms of patient
safety, clinician burden, and health services usage.” 20
This review supports the efforts described above to develop
outcome measures that properly evaluate the success or failure
of PROs in changing outcomes for patients, providers,
and health care systems.
TABLE 2. Two Examples of ePRO Systems in Use at
Oncology Clinics 19
Patient-reported outcomes provide a unique and important
perspective in oncology.
PROs are used in clinical practice, including via electronic
capture.
U.S. Food and Drug Administration–approved drugs can
include patient-reported outcomes in their label claims.
Patient-reported outcomes can be used for research,
including studies of disease progression.
The future of patient-reported outcomes will include
technology to help patients capture data and help
providers identify the information that is meaningful and
actionable.
System
Patient Viewpoint
(Johns Hopkins)
STAR Prostatectomy
Project (MSKCC)
Population Treatment and survivorship Postsurgery for radical
prostatectomy
Goal
Survey
Content
Information
to Patient
Flexible system of patient
monitoring
Topics and schedule chosen
for patient by clinician
Patient can see score reports
showing changes over time
Monitor recovery of urinary
and sexual function
Urinary and sexual function
and quality of life
Changes in function over time
compared to other patients
and expected improvement
based on prediction model
Abbreviatons: ePRO, electronic patient-reported outcomes; STAR, Symptom Tracking &
Reporting; MSKCC, Memorial Sloan Kettering Cancer Center.
asco.org/edbook | 2015 ASCO EDUCATIONAL BOOK
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