Development of a questionnaire specifically for patients with Ileal Orthotopic Neobladder (IONB)

Salvatore Siracusano, Mauro Niero, Cristina Lonardi, Maria A. Cerruto, Stefano Ciciliato, Laura Toffoli, Francesco Visalli, Davide Massidda, Massimo Iafrate, Walter Artibani, Pierfrancesco Bassi, Ciro Imbimbo, Marco Racioppi, Renato Talamini, Carolina D'Elia, Giovanni Cacciamani, Davide De Marchi, Tommaso Silvestri, Paolo Verze, Emanuele Belgrano

Research output: Contribution to journalArticle

15 Citations (Scopus)

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.

Original languageEnglish
Article number135
JournalHealth and Quality of Life Outcomes
Volume12
Issue number1
DOIs
Publication statusPublished - Sep 1 2014

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Quality of Life
Urinary Diversion
Psychometrics
Surveys and Questionnaires
Cystectomy
Reproducibility of Results
Sleep
Interviews

Keywords

  • Ileal orthotopic neobladder
  • Quality of life
  • Radical cystectomy
  • Specific questionnaire

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Medicine(all)

Cite this

Siracusano, S., Niero, M., Lonardi, C., Cerruto, M. A., Ciciliato, S., Toffoli, L., ... Belgrano, E. (2014). Development of a questionnaire specifically for patients with Ileal Orthotopic Neobladder (IONB). Health and Quality of Life Outcomes, 12(1), [135]. https://doi.org/10.1186/s12955-014-0135-y

Development of a questionnaire specifically for patients with Ileal Orthotopic Neobladder (IONB). / Siracusano, Salvatore; Niero, Mauro; Lonardi, Cristina; Cerruto, Maria A.; Ciciliato, Stefano; Toffoli, Laura; Visalli, Francesco; Massidda, Davide; Iafrate, Massimo; Artibani, Walter; Bassi, Pierfrancesco; Imbimbo, Ciro; Racioppi, Marco; Talamini, Renato; D'Elia, Carolina; Cacciamani, Giovanni; De Marchi, Davide; Silvestri, Tommaso; Verze, Paolo; Belgrano, Emanuele.

In: Health and Quality of Life Outcomes, Vol. 12, No. 1, 135, 01.09.2014.

Research output: Contribution to journalArticle

Siracusano, S, Niero, M, Lonardi, C, Cerruto, MA, Ciciliato, S, Toffoli, L, Visalli, F, Massidda, D, Iafrate, M, Artibani, W, Bassi, P, Imbimbo, C, Racioppi, M, Talamini, R, D'Elia, C, Cacciamani, G, De Marchi, D, Silvestri, T, Verze, P & Belgrano, E 2014, 'Development of a questionnaire specifically for patients with Ileal Orthotopic Neobladder (IONB)', Health and Quality of Life Outcomes, vol. 12, no. 1, 135. https://doi.org/10.1186/s12955-014-0135-y
Siracusano, Salvatore ; Niero, Mauro ; Lonardi, Cristina ; Cerruto, Maria A. ; Ciciliato, Stefano ; Toffoli, Laura ; Visalli, Francesco ; Massidda, Davide ; Iafrate, Massimo ; Artibani, Walter ; Bassi, Pierfrancesco ; Imbimbo, Ciro ; Racioppi, Marco ; Talamini, Renato ; D'Elia, Carolina ; Cacciamani, Giovanni ; De Marchi, Davide ; Silvestri, Tommaso ; Verze, Paolo ; Belgrano, Emanuele. / Development of a questionnaire specifically for patients with Ileal Orthotopic Neobladder (IONB). In: Health and Quality of Life Outcomes. 2014 ; Vol. 12, No. 1.
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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.",
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T1 - Development of a questionnaire specifically for patients with Ileal Orthotopic Neobladder (IONB)

AU - Siracusano, Salvatore

AU - Niero, Mauro

AU - Lonardi, Cristina

AU - Cerruto, Maria A.

AU - Ciciliato, Stefano

AU - Toffoli, Laura

AU - Visalli, Francesco

AU - Massidda, Davide

AU - Iafrate, Massimo

AU - Artibani, Walter

AU - Bassi, Pierfrancesco

AU - Imbimbo, Ciro

AU - Racioppi, Marco

AU - Talamini, Renato

AU - D'Elia, Carolina

AU - Cacciamani, Giovanni

AU - De Marchi, Davide

AU - Silvestri, Tommaso

AU - Verze, Paolo

AU - Belgrano, Emanuele

PY - 2014/9/1

Y1 - 2014/9/1

N2 - 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.

AB - 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.

KW - Ileal orthotopic neobladder

KW - Quality of life

KW - Radical cystectomy

KW - Specific questionnaire

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