Content validity of chronic pain patient reported outcome measures - attributes that matter most to patients with persistent pain

Abstract Background Understanding chronic pain requires capturing the subjective experience of the patient. While many patient reported outcome measures (PROMs) exist to collect this information, the development of these PROMs has limited insights from those living with chronic pain, calling into question the validity of these measures. Eight attributes have been identified by persons living with chronic pain as being most impactful. The ICF core set of chronic widespread pain (CWP) is a subset of ICF categories that are relevant to chronic pain. In the present study concepts within chronic pain PROMs are compared to the 8 attributes and the CWP. Methods A literature review identified existing chronic pain PROMs. Concepts from PROMs were linked to 2nd level ICF categories and compared to the eight attributes and core set. Results Sixty-two PROMs were identified containing a total of 1315 items. Of the 1315 items, 78% overlapped with the CWP. Only 20% were associated with a chronic pain attribute. Conclusion Existing PROMs poorly reflect the most impactful attributes of the subjective experience of chronic pain. However, PROMs do reflect well the spectrum of limitations that are agreed upon by an international collective of pain experts to be associated with chronic pain