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Development of a questionnaire specifically for patients with Ileal Orthotopic Neobladder (IONB)
- Source :
- Health and Quality of Life Outcomes
- Publisher :
- Springer Nature
-
Abstract
- Background The ileal orthotopic neobladder (IONB) is often used in patients undergoing radical cystectomy. The IONB allows to void avoiding the disadvantages of the external urinary diversion. In IONB patients the quality of life (QoL) appears compromised by the need to urinate voluntarily. The patients need to wake up at night interrupting the sleep-wake rhythm with consequences on social and emotional life. At present the QoL in IONB patients is evaluated by generic questionnaires. These are useful when IONB patients are compared with patients with different urinary diversions but they are less effective when only IONB patients are evaluated. To address this problem a specific questionnaire—the IONB-PRO—was developed. Methods A) Based on a conceptual framework, narrative-based interviews were conducted on 35 IONB patients. A basic pool of 43 items was produced and organized throughout two clinical and four QoL dimensions. An additional 15 IONB patients were interviewed for face validity testing. B) Psychometric testing was conducted on 145 IONB patients. Both classic test strategy and Rasch analysis were applied. Psychometric properties of the resulting scales were comparatively tested against other QoL-validated scales. Results The IONB-PRO questionnaire includes two sections: one on the QoL and a second section on the capability of the patient to manage the IONB. For evaluation of the QoL, three versions were delivered: 1) a basic 23-item QoL version (3 domains 23-items; alpha 0.86÷ 9.69), 2) a short-form 12-item QoL scale (alpha = 0.947), and 3) a short-form 15-item Rasch QoL scale (alpha = 0.967). Correlations of the long version scales with the corresponding dimensions of the EORTC-QLQ C30 and the EORTC-BLM30 were significant. The short forms exhibited significant correlations with the global health dimension of the EORTC-QLQ and with the urinary subscales of the EORTC-BLM30. The effect size was approximately 1.00 between patients at the 1-year follow-up period and those with 3, 5, and > 5-year follow-up periods for all scales. No relevant differences were observed between the 12-item short-form and the Rasch scale. Conclusions The IONB-PRO long and short-forms demonstrated a high level of internal consistency and reliability with an excellent discriminanting validity.
- Subjects :
- Male
Psychometrics
Radical cystectomy
Ileal orthotopic neobladder
Quality of life
Specific questionnaire
medicine.medical_treatment
Urinary Diversion
Surveys and Questionnaires
Surveys and Questionnaire
Health Status Indicators
Health Status Indicator
Settore MED/24 - UROLOGIA
Medicine (all)
General Medicine
Middle Aged
humanities
Female
Public Health
Psychometric
Human
Adult
medicine.medical_specialty
Reproducibility of Result
Cystectomy
Follow-Up Studie
Interviews as Topic
Ileum
medicine
Humans
In patient
Aged
Follow-Up Studies
Reproducibility of Results
Quality of Life
Psychometric testing
Face validity
Rasch model
business.industry
questionnaire
Research
Urinary diversion
Environmental and Occupational Health
Public Health, Environmental and Occupational Health
Surgery
Physical therapy
business
Subjects
Details
- Language :
- English
- ISSN :
- 14777525
- Volume :
- 12
- Issue :
- 1
- Database :
- OpenAIRE
- Journal :
- Health and Quality of Life Outcomes
- Accession number :
- edsair.doi.dedup.....26deacccee3b2d632c8ea28bcfa1b1b7
- Full Text :
- https://doi.org/10.1186/s12955-014-0135-y