289mal management of SSc. In addition, following patients with SSc is more complete
in research cohorts and also clinical practice if some PROs are utilized.
Many organ-based complications of SSc have established outcome measure-
ments that assess activity and severity of disease and response to treatment. These
outcomes may have overlap with patient measures but are not identical. The patient
viewpoint gives a different and more holistic perspective. Understanding what com-
ponents of their disease the patient perceives as most important or debilitating is
crucial to helping them cope with SSc. It is important to know if a treatment is
concordant between the patient and physician, as a treatment that improves skin
could have side effects that outweigh the benefi ts or have benefi ts that are not rele-
vant to the patient. A physician would likely view signifi cant organ involvement,
even if asymptomatic, as a critically important aspect in the management of SSc,
whereas a patient may consider symptomatic involvement, even if not life threaten-
ing, as their principle concern. As such, there is often a disconnect between what the
physician and patient prioritize as the chief issues with respect to their condition
[ 26 ]. Healthcare should improve health outcomes for patients, so effective methods
of capturing the essence of illness experience across the many facets of life are
important. Thus, the development and validation of tools measuring patient-reported
outcomes in SSc are necessary.
Key Elements
SSc is chronic and multisystemic, thus impacting patients throughout many domains
of their well-being. Measurement of PROs is needed to properly address emotional,
functional, and social states. Such instruments are valuable tools that go beyond
Fig. 11.1 A diagram depicting common features of systemic sclerosis (SSc). GERD gastroesoph-
ageal refl ux disease, ILD interstitial lung disease, PA H pulmonary arterial hypertension
11 PROMs for Systemic Sclerosis (Scleroderma)