Patient perspectives on recall period and response options in patient‐reported outcome measures for chronic rhinosinusitis symptomatology: A pilot study

Abstract

Objective Patient‐reported outcome measures (PROMs) for assessment of chronic rhinosinusitis (CRS) employ a variety of recall periods and response scales for reporting CRS symptom burden. CRS patient perspective is unknown with respect to recall periods and response scales in PROMs. Design Cross‐sectional study. Setting Tertiary rhinology clinic. Participants Sixty three adults with CRS. Main outcome measures Participants were asked to choose which CRS symptom recall period—1 day, 2 weeks, 1 month or greater than 1 month—was most reflective of their current disease state and best to base treatment recommendations (including surgery) upon. Participants were also asked to report which of six response scales (one visual analogue scale [VAS] and five Likert scales ranging from four to eight items) were easiest to use and understand, and most preferred. Results A majority of participants felt the current state of their CRS symptoms was best reflected by a recall period of 2 weeks to 1 month; however, patients preferred that recommendations about treatments, including endoscopic sinus surgery, be determined by symptoms experienced over at least a one‐month period. Participants generally found the VAS and seven‐item Likert scale to be the easiest to use and understand, and their most preferred scales. No patient characteristics associated with preferences for recall periods or response scales. Conclusion Future PROMs for CRS symptoms should consider assessment of symptoms over a one‐month time frame and use either a VAS or seven‐item Likert response scale to optimally balance reflection of current disease state, need for intervention and patient preference.

Exploring possibilities for shortening the 22‐item Sino‐Nasal Outcome Test (SNOT‐22) using item response theory

“…The importance of stakeholder involvement (i.e., patients and healthcare professionals) during PROM development and refinement has been outlined. 44,[46][47][48] The involvement of clinicians and researchers is of particular importance for determining which items to use or eliminate in a well-established PROM, such as the SNOT-22. Although considering psychometric properties and evidence (data-driven approach) is undoubtedly helpful for PROM development, stakeholders' perspectives must also be considered.…”

“…The inclusion of patient perspectives in the technical aspects of CRS PROM design have been missing and have only recently been shown to provide novel insights into how CRS PROMs could more accurately reflect patients' disease burdens and how PROM results may most inform clinical decision-making. 48 Therefore, it is clear that IRT will not be the final answer to SNOT-22 development and refinement (or for any PROM) entirely on its own, because important stakeholder information (such as from patients or healthcare professionals) still needs to be considered. Nonetheless, we believe that an IRT-based approach provides a starting point from which further development and refinement steps may profit, with the goal to increase the utility of the SNOT-22 in both clinical and research settings.…”

“…The importance of stakeholder involvement (i.e., patients and healthcare professionals) during PROM development and refinement has been outlined 44,46–48 . The involvement of clinicians and researchers is of particular importance for determining which items to use or eliminate in a well‐established PROM, such as the SNOT‐22.…”

“…Moreover, patient perspectives are also important to consider as well. The inclusion of patient perspectives in the technical aspects of CRS PROM design have been missing and have only recently been shown to provide novel insights into how CRS PROMs could more accurately reflect patients’ disease burdens and how PROM results may most inform clinical decision‐making 48 . Therefore, it is clear that IRT will not be the final answer to SNOT‐22 development and refinement (or for any PROM) entirely on its own, because important stakeholder information (such as from patients or healthcare professionals) still needs to be considered.…”

Patient-reported chronic rhinosinusitis disease control is a valid measure of disease burden

“…In this study, we assessed the validity of patient-reported CRS disease control on a 1-month time scale to be consistent with the recall period used to assess CRS symptoms by EPOS CRS disease control guidelines. However, more recent work by our group has also suggested that a 1-month recall period for CRS disease burden may best balance patients' confidence in their recall ability as well as balance patient perspectives on timescales to be used for assessment of their current disease state as well as for clinical decision-making with respect to treatments including endoscopic sinus surgery (40) .…”