Page 218 - Let them speak Towards a patient reported outcome measure set for

Chapter 8
reporting by including items on observable health-related behaviors and
may therefore represent a valuable complement to the PROMs in assessing
an individual’s health and functioning.
Most items in the core PROM set are phrased positively (e.g., I could move my
legs) rather than negatively (e.g., I could not move my legs), with exceptions for
constructs like anxiety, where positive phrasing is less feasible. This positive
phrasing may reduce response burden for both individuals and caregivers.
However, repeatedly reporting inability to perform certain activities may still
be a negative experience. Caregivers of individuals with fragile X syndrome
have expressed a preference for including strength-based items (e.g., What
are your child’s strengths?) to make completion of questionnaires more
positive (11). Therefore, incorporating strength-based questions into the core
PROM set may help improve the experience of completion.
From a psychometric perspective, constructs such as anxiety and
depression are inherently defined by the presence and severity of
negative symptoms, which makes them more difficult to capture using
positively worded items. Positive formulations often reflect the absence
of distress or the presence of well-being rather than the target construct
itself, resulting in reduced sensitivity, restricted variance, and weaker
measurement precision. A PROMIS Screen-to-CAT approach may help
address the limitation of repeatedly completing negatively worded items
among individuals who report no symptoms (36). With PROMIS Screen-
to-CAT, only one or two items are initially administered. If the response to
the item(s) is the “healthiest” response, administration is discontinued. If
not, individuals proceed according to the recommended CAT stopping rule.
Although Screen-to-CAT reduces the number of negative worded items for
individuals who do not report symptoms, it does not do so for those who
do report symptoms.
Employment of the core PROM set
The core PROM set should be used in GID care to follow patient functioning,
identify health problems, and inform treatment decisions. Completion of
the PROMs by individuals with GID or their caregivers ensures that their
perspective is captured, supporting a more holistic understanding of the
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