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<p>In atopic eczema (AE) research, patient reported outcome measures (PROMs) capture patient’s own assessments of their health status. Harmonising Outcome Measures for Eczema (HOME) established a core outcome set (COS) containing PROMs to harmonize trial data. Patient-level barriers to completing these PROMs, which may affect their utilization and further implementation, remain unexplored. This study assesses patient’s views and experiences to investigate the feasibility and acceptability of the PROMs in the HOME COS for AE. A qualitative concept elicitation interview study was conducted, embedded within two ongoing studies utilizing the HOME COS for AE. Patients completed four PROMs (the Patient Oriented Eczema Measure (POEM), Numerical Rating Scale for peak pruritus (NRS-11), Dermatology Life Quality Index (DLQI), and Recap of Atopic Eczema (RECAP)) as part of their study participation. Participants were interviewed twice, at baseline and 6 months. Two independent researchers performed thematic analysis. Thirteen patients participated, and 25 interviews were conducted. Data saturation was reached for both timepoints. Thematic analysis yielded five themes regarding feasibility and four regarding acceptability. Regarding feasibility, patients found the length and frequency of the PROMs adequate, with a preference for digital surveys over paper surveys. In-hospital administration was preferred over completing surveys at home. In acceptability, disease severity influenced the ease of completion and perceived value of the PROMs. Participants experiencing fluctuating severity expressed unease with the one-week recall periods of three PROMs, as these were considered inaccurate in capturing eczema flares and fluctuations over longer periods of time. The PROMs increased disease awareness among patients. Although the PROMs contained overlapping questions, this was not perceived as bothersome. Familiarization after 6 months did not affect feasibility or acceptability. From the perspective of AE patients in clinical research, the HOME COS PROMs are feasible and generally acceptable. Acceptability is negatively affected by the one-week recall period of three PROMs, as patients found this insufficient to record fluctuating disease. However, multiple facilitators to (continued) implementation were identified, which outweigh this minor barrier.</p>

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Acceptability and feasibility of patient-reported outcome measures for atopic eczema: an evaluation of PROMs from the HOME core outcome set

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月31日

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  • Jitske Dijkstra,
  • Eva Knöps,
  • Jolanda M. Maaskant,
  • Phyllis I. Spuls,
  • Louise A. A. Gerbens

摘要

In atopic eczema (AE) research, patient reported outcome measures (PROMs) capture patient’s own assessments of their health status. Harmonising Outcome Measures for Eczema (HOME) established a core outcome set (COS) containing PROMs to harmonize trial data. Patient-level barriers to completing these PROMs, which may affect their utilization and further implementation, remain unexplored. This study assesses patient’s views and experiences to investigate the feasibility and acceptability of the PROMs in the HOME COS for AE. A qualitative concept elicitation interview study was conducted, embedded within two ongoing studies utilizing the HOME COS for AE. Patients completed four PROMs (the Patient Oriented Eczema Measure (POEM), Numerical Rating Scale for peak pruritus (NRS-11), Dermatology Life Quality Index (DLQI), and Recap of Atopic Eczema (RECAP)) as part of their study participation. Participants were interviewed twice, at baseline and 6 months. Two independent researchers performed thematic analysis. Thirteen patients participated, and 25 interviews were conducted. Data saturation was reached for both timepoints. Thematic analysis yielded five themes regarding feasibility and four regarding acceptability. Regarding feasibility, patients found the length and frequency of the PROMs adequate, with a preference for digital surveys over paper surveys. In-hospital administration was preferred over completing surveys at home. In acceptability, disease severity influenced the ease of completion and perceived value of the PROMs. Participants experiencing fluctuating severity expressed unease with the one-week recall periods of three PROMs, as these were considered inaccurate in capturing eczema flares and fluctuations over longer periods of time. The PROMs increased disease awareness among patients. Although the PROMs contained overlapping questions, this was not perceived as bothersome. Familiarization after 6 months did not affect feasibility or acceptability. From the perspective of AE patients in clinical research, the HOME COS PROMs are feasible and generally acceptable. Acceptability is negatively affected by the one-week recall period of three PROMs, as patients found this insufficient to record fluctuating disease. However, multiple facilitators to (continued) implementation were identified, which outweigh this minor barrier.