PUK14 HOW DO PATIENTS DESCRIBE THEIR SYMPTOMS OF INTERSTITIAL CYSTITIS/PAINFUL BLADDER SYNDROME (IC/PBS)? QUALITATIVE INTERVIEWS WITH PATIENTS TO SUPPORT THE DEVELOPMENT OF A PATIENT-REPORTED SYMPTOM-BASED SCREENER FOR IC/PBS

  • Abraham L
  • Arbuckle R
  • Bonner N
  • et al.
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Abstract

- patient-reported, symptom-based measures may be more appropriate than the insensitive NIDDK criteria for identifying IC/PBS patients but existing measures have poor specificity, likely due to inadequate content validity - this study conducted qualitative interviews with patients to identify key IC symptoms, and the language used to describe them, to develop a new symptom-based IC screener: 44 IC/PBS patients with a confirmed diagnosis in the US, France and Germany were interviewed about their symptoms and subsequent impact on quality of life; 10 overactive bladder (OAB) patients were also interviewed to improve specificity - interviews included open-ended questions, creative tasks and focussed discussion - key symptoms identified by IC/PBS patients were the urge to urinate, urination frequency, and pain; urge had four components: 1) need to urinate driven by pain; 2) a need to urinate to avoid pain getting worse; 3) a constant need to urinate and; 4) a sudden need to urinate - in contrast, OAB patients reported urge that did not involve pain - both OAB and IC/PBS patients experienced high day and night-time urination frequency - IC pain was perceived to be in the bladder, abdomen or pelvis, and was most commonly described as “pressure”, “burning”, “sharp” and “discomfort”

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Abraham, L., Arbuckle, R., Bonner, N., Crook, T., Humphrey, L., Mills, I., … van de Merwe, J. (2009). PUK14 HOW DO PATIENTS DESCRIBE THEIR SYMPTOMS OF INTERSTITIAL CYSTITIS/PAINFUL BLADDER SYNDROME (IC/PBS)? QUALITATIVE INTERVIEWS WITH PATIENTS TO SUPPORT THE DEVELOPMENT OF A PATIENT-REPORTED SYMPTOM-BASED SCREENER FOR IC/PBS. Value in Health, 12(7), A310. https://doi.org/10.1016/s1098-3015(10)74524-1

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