8
economics are that it allows comparison across different settings by using a com-
mon unit of measurement (i.e., cost per QALY). However, different preference
elicitation techniques lead to different QALY estimates.
Direct and indirect costs associated with health interventions can also be assessed
using PROs. While patient records, databases from insurance companies, hospital,
or provider databases are ideally used to quantify direct costs, this is often infeasible
in practical settings. Moreover, no information about direct, non-medical costs
incurred by patients can be gathered through these data sources. Therefore various
standardized, validated questionnaires or diaries exist that can be used by patients to
record the direct and indirect medical costs that they make while participating in a
clinical trial [ 29 ]. Indirect non-medical costs associated with work productivity can
also be assessed using various PROs. Most of these PROs can be used to assess
work productivity loss, absenteeism, and presentism. However, it has been found
that the agreement between different questionnaires is often low, which might be
explained by differing recall periods and operationalization of concepts [ 30 ].
Finally, PROs can be used to assess the side effects of treatment [ 31 ].
Individual Patient Care
The use of PRO as supplemental information to clinical outcome measures in clini-
cal practice in rheumatology has long been advocated by various authors [ 4 , 32 ].
PROs may be used in clinical practice for a variety of purposes [ 33 ]. PROs have
long been used as screening tools to facilitate detection of physical or psychological
problems that might otherwise not be adressed during clinic visits [ 34 ]. Disease-
related distress or psychiatric comorbidity is often overlooked in clinical practice
[ 35 ]. Consequently, most screening tools for use in the clinic, such as the Patient
Health Questionnaire, focus on assessing these issues [ 36 ]. However, generic
HRQOL or symptom PROs instruments can also be used to identify particularly
bothersome issues to the patient that would otherwise remain undetected, such as
sleep disturbance, pain, participation restrictions, and work disability.
PROs can also be used to monitor disease over time and to provide information
about the impact of prescribed treatment in terms of outcomes that matter to patients.
In clinical care settings, electronic health records increasingly integrate patient
portals that can be used to store and give insight to patients regarding the progres-
sion of their HRQOL outcomes since treatment has started. This feedback may direct
patient–physician interactions and informing clinical decision-making [ 35 , 37 ].
According to Greenhalgh, the use of PROs in clinical practice may also serve to
facilitate patient-centered care by bringing the patient’s desired outcomes to the
clinical agenda [ 33 ]. Integration into routine clinic visits of PROs reflecting issues
of importance to the patient provide a means for them to communicate effectively
with their physicians about their priorities for care. This might be beneficial since
patients and doctors may not always agree on which outcomes are most important.
M.A.H.O. Voshaar and M.A.F.J. van de Laar