Sammanfattning
Background: Breathlessness is a common and distressing symptom for many patients with
advanced diseases. Due to the subjective nature of breathlessness, patient-reported outcome
measures (PROMs) are required to measure the patient’s own experience.
Objective: To identify PROMs used to measure breathlessness in palliative care and to synthesise
their measurement properties. Instruments had to include dimensions for breathlessness and
anxiety to be considered.
Method: A systematic literature search was performed in March 2014 and updated in December 2015.
Two reviewers independently screened all references for relevance and critically appraised included
studies with the COSMIN-checklist. We performed a best evidence synthesis to summarise the
measurement properties of each included PROM.
Results: We screened 1948 references for relevance, and included 15 studies evaluating the
measurement properties of four different PROMs: CDS, DMQ, SRI and a respiratory symptom
checklist. None of the included instruments were validated directly for use in a palliative setting, but
they generally showed promising measurement properties in other relevant settings. We still lack
data on important measurement properties for all the available instruments, and currently, only SRI
seems to be available in a Norwegian validated version. Further research is therefore needed to
translate and validate the PROMs for use in palliative care in Norway.
Conclusion: The identified PROMs for breathlessness and anxiety show promising measurement
properties, but further research is needed before we can draw firm conclusions and before the
instruments are available for use in palliative care in Norway. Our review suggests that only SRI is
available in a translated and validated Norwegian version.