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Table 1 The topics discussed in concept elicitation interviews

From: Qualitative interviews to improve patient-reported outcome measures in late-onset Pompe disease: the patient perspective

Topic in concept elicitation interview Objective
LOPD symptoms:
 Asked about timing and triggers of symptoms
 Asked about how symptoms have evolved over time
 Asked about symptom characteristics (spontaneous report, then aided) and whether the patient felt that the symptom(s) was related to treatment
To assess frequency of symptoms reported, level of disturbance for each symptom, words and phrases patients use to report symptoms, and possible differences in patient experience over time
LOPD impacts:
 Asked about the kinds of impacts or effects of the symptoms on the patient’s life
 Asked about the degree of disturbance of these impacts on the patient’s life
To assess frequency of impacts reported, level of disturbance for each impact, words and phrases patients use to report impacts, and possible differences in patient experience over time
  1. LOPD late-onset Pompe disease