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incorporate questions about specifi c aspects of organization and delivery of care
that impact quality. In a study of 4573 patients in 27 practices across 9 primary care
trusts in England, measures of patients’ experiences discriminated more effectively
between practices than did measures of satisfaction [ 3 ]. In addition, patients can
describe high levels of satisfaction at the same time as describing experiences that
are suboptimal [ 4 , 5 ]. Thus it has been suggested that for continuous quality
improvement it would be more fruitful to look at the underlying components of the
concept of satisfaction, namely expectations and experiences [ 6 ].
Much work has been done on PROMs in a range of diseases, countries, and care
settings [ 1 , 7 – 15 ]. Similar work was carried out in rheumatology [ 16 – 19 ] where
PROMs have proven to be a useful tool for patient management [ 20 ]. The US
National Institutes of Health Patient-Reported Outcomes Measurement Information
System (PROMIS) allows assessment of the impact of chronic conditions on
HRQoL across diseases. Using this tool demonstrated that chronic diseases are
associated with poorer HRQoL relative to the general US population [ 21 ]. PROMIS
has also demonstrated validity and reliability in osteoarthritis [ 22 ]. The potential
benefi t of adopting a more dynamic role for PROMs in disease management has
been discussed, with potential benefi ts including modifi cation of disease impact
through improved patient adherence to treatment as patients monitor their response
to therapy [ 23 ]. The development of more holistic tools that captures both PROMs
and patient experience has also been proposed [ 8 ].
A recent meta-analysis [ 24 ] identifi ed 42 PROMs in rheumatoid arthritis (RA),
showing that differing groups have felt the need to address this in different ways
and that PROMs measure different aspects of the patients’ disease experiences.
The European League Against Rheumatism (EULAR) has dedicated a special
Website for patient-reported outcome measures available for different rheumatic
diseases in different languages ( http://oml.eular.org ). The Website aims at provid-
ing a comprehensive database of validated patient-reported instruments (indices,
questionnaires, scales, or others) used in rheumatology. The database includes a
detailed description of each instrument, including: the instrument itself, descrip-
tion of the population(s) or settings where it has been validated, recommenda-
tions and rules for use (data collection and scoring method), guideline for
interpretation of the results in clinical practice or in research, references, and
validated translated versions in the European Union (EU) languages, with down-
load if possible or link to an access page as well as information on how validation
aspects were tested.
However, even with existing PROMs in rheumatology, there is a need to ensure
that the PROMs are truly from the patient perspective and refl ect outcomes that
are a priority for the patient rather than those that are perceived as a priority by
healthcare professionals [ 25 , 26 ]. It has been suggested that a more comprehen-
sive approach capturing personal life impact measures (PLIMs) would take into
account the broader impact of living with the disease and its consequences [ 25 ].
In contrast to the wealth of information available on PROMs, relatively little pub-
lished information is available for PREMs in general or PREMs in rheumatology
specifi cally.
M. Bukhari