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Questionnaires  
 

ESSIC uses the name bladder pain syndrome (BPS) instead of interstitial cystitis (IC) and/or painful bladder syndrome (PBS):
click here
for more details.

 

general
 
  • Is there a discrepancy between patient and physician quality of life assessment?
    Srikrishna S, Robinson D, Cardozo L, et al. Neurourol Urodyn 2009;28:179-82
    • this study confirms, according to the authors, that physicians often differ from patients in the assessment of quality of life (QoL)
    • this is most likely due to a difference in patient–physician perception of ‘‘significant’’ lower urinary tract symptoms and clearly demonstrates the importance of patient evaluated QoL in routine clinical assessment
 
bladder pain syndrome
 
  • 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. Value Health 2009;12:A310 (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”
  • Validation of a modified national institutes of health chronic prostatitis symptom index to assess genitourinary pain in both men and women.
    Clemens JQ, Calhoun EA, Litwin MS, et al. Urology 2009;74:983-7
    - the authors developed the Genitourinary Pain Index (GUPI) by modifying and adding questions to the NIH-Chronic Prostatitis Symptom Index.
    - the GUPI discriminated between men with chronic prostatitis or IC, those with other symptomatic conditions (dysuria, frequency, chronic cystitis), and those with none of these diagnoses
    - the GUPI also discriminated between women with IC, those with incontinence, and those with none of these diagnoses
    - the GUPI scores correlated highly with scores on the Interstitial Cystitis Symptom Index and Problem Index; the GUPI was highly responsive to change, and the change in score was similar in both male and female responders
    - a reduction of 7 points robustly predicted being a treatment responder (sensitivity 100%, specificity 76%)
    - the authots conclude that the GUPI is a valid, reliable, and responsive instrument that can be used to assess the degree of symptoms in both men and women with genitourinary pain complaints
  • Receiver operating characteristic curves of symptom scores in the diagnosis of interstitial cystitis/painful bladder syndrome.
    Fenton BW, Palmieri PA, Fanning J. J Minim Invasive Gynecol 2008;15:601-4
    • the objective of this study was to develop receiver operating characteristic ROC curves for IC symptom scores based on the standard of pain relief after cystoscopy with hydrodistention (HD)
    • this is a retrospective analysis of IC symptom index (ICSI) and visual analog scale (VAS) bladder pain (VASb) scores recorded at initial patient visit; patients underwent a diagnostic algorithm leading to selected HD
    • a total of 277 women with chronic pelvic pain were evaluated; the mean duration of pain was 54 months; mean pelvic pain VAS score was 7.5; those proved to have IC had a VASb score of 7 and an ICSI score of 11
    • the most accurate symptom score for detecting IC based on this analysis was the VASb with a threshold of 7; although the ICSI may have use, in this setting it is not as useful as the VAS for identifying patients who eventually prove to have IC


  • Wisconsin Symptom Instrument (UWI)
    • the UWI includes 7 BPS/IC related questions about frequency, urgency, nocturia and pain; these items are mixed in with 18 reference items about other medical problems such as shortness of breath, back pain, and headaches.

    UWI score
 
urgency
 
  • Evaluation of urgency in women, with a validated Urgency, Severity and Impact Questionnaire (USIQ).
    Lowenstein L, Fitzgerald MP, Kenton K, et al. Int Urogynecol J Pelvic Floor Dysfunct. 2008 Nov 20. [Epub ahead of print] PMID: 19020786
    • the aim of this study was to develop and validate a urinary urgency questionnaire to measure the severity and quality of life (QOL) impact from urinary urgency, in order to advance the clinical understanding of urinary urgency, and ultimately to guide the evaluation and treatment of patients with OAB
    • the USIQ comprises five symptom severity items and eight QOL items
    • click the title above for the full article (it is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited)
 
various
 
 
quality of life

Rand Health scores for quality of life
All of the surveys from RAND Health such as the SF36, SF20 and SF12 are public documents, available without charge (for non-commercial purposes). See: http://www.rand.org/health/surveys_tools/mos/mos_core_36item.html

Terms and Conditions for Using the 36-Item Short Form Health Survey
RAND grants permission to use "RAND 36-Item Short Form Health Survey" in accordance with the following conditions, which shall be assumed by all to have been agreed to as a consequence of accepting and using this document:
1. Changes to the Health Survey may be made without the written permission of RAND. However, all such changes shall be clearly identified as having been made by the recipient.
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SF-36

SF-20

SF-12

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
     
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