Development of the First Patient-centred Set of Outcomes for Muscle-invasive and Metastatic Bladder Cancer: A Multicentre Initiative

for the Santeon MIBC Study Group

doi:10.1016/j.euros.2021.01.014

Development of the First Patient-centred Set of Outcomes for Muscle-invasive and Metastatic Bladder Cancer: A Multicentre Initiative

for the Santeon MIBC Study Group

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

Background: To improve and compare outcomes in healthcare, it is necessary to standardise outcome measurements. There are no widely accepted standardised outcome measures reflecting quality of care for bladder cancer (BCa) patients. Objective: The aim of this study was to create a standardised set of outcomes for patients with muscle-invasive or metastatic BCa, using the value-based healthcare principles. Design, setting, and participants: A multidisciplinary working group of 25 healthcare professionals and patient representatives was assembled, to develop the set. Outcome measurements and statistical analysis: We used an online RAND-modified Delphi process to prioritise, discuss, and reach consensus regarding the outcomes, case-mix variables, and treatment factors. Results and limitations: Recognising the heterogeneity of patients with BCa, the working group defined the scope as patients with muscle-invasive and metastatic BCa. A total of 24 outcomes, including ten patient-reported outcomes, were included in the standard set of outcomes, covering survival, complication rates, recurrence of disease, readmissions after treatment, and quality of life (QoL). Fourteen case-mix variables were included. The EQ-5D and European Organisation for Research and Treatment of Cancer quality of life (EORTC-QLQ) questionnaires were recommended to measure QoL. Conclusions: We developed the first standardised set of patient-centred outcomes for muscle-invasive and metastatic BCa. The sue of this set enables institutions to monitor, compare, and improve the quality of BCa care, on an international level. Patient summary: Our group of healthcare professionals and patient representatives recommended a standardised set of patient-centred outcomes to be followed during the treatment of patients with muscle-invasive or metastatic bladder cancer, in order to monitor, compare, and improve the quality of care.

Original language	English
Pages (from-to)	18-26
Number of pages	9
Journal	European Urology Open Science
Volume	26
DOIs	https://doi.org/10.1016/j.euros.2021.01.014
Publication status	Published - 1 Apr 2021

Bibliographical note

Funding Information:
Funding/Support and role of the sponsor: This research received a grant from Roche Nederland B.V. to perform this study (grant number: ML40374 ; Daan J. Reesink). The funders had no role in the study design, data collection, analysis, and decision regarding where to publish this manuscript.

Publisher Copyright:
© 2021 The Author(s)

Funding

Funding/Support and role of the sponsor: This research received a grant from Roche Nederland B.V. to perform this study (grant number: ML40374 ; Daan J. Reesink). The funders had no role in the study design, data collection, analysis, and decision regarding where to publish this manuscript.

Keywords

Invasive bladder cancer
Metastatic
Muscle invasive
Patient-reported outcome measures
Standard set of outcome measures

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1016/j.euros.2021.01.014Licence: CC BY-NC-ND

1-s2.0-S2666168321000227-mainFinal published version, 845 KBLicence: CC BY-NC-ND

Cite this

@article{02d11b6b01f5423a8a5799e5f5151785,

title = "Development of the First Patient-centred Set of Outcomes for Muscle-invasive and Metastatic Bladder Cancer: A Multicentre Initiative",

abstract = "Background: To improve and compare outcomes in healthcare, it is necessary to standardise outcome measurements. There are no widely accepted standardised outcome measures reflecting quality of care for bladder cancer (BCa) patients. Objective: The aim of this study was to create a standardised set of outcomes for patients with muscle-invasive or metastatic BCa, using the value-based healthcare principles. Design, setting, and participants: A multidisciplinary working group of 25 healthcare professionals and patient representatives was assembled, to develop the set. Outcome measurements and statistical analysis: We used an online RAND-modified Delphi process to prioritise, discuss, and reach consensus regarding the outcomes, case-mix variables, and treatment factors. Results and limitations: Recognising the heterogeneity of patients with BCa, the working group defined the scope as patients with muscle-invasive and metastatic BCa. A total of 24 outcomes, including ten patient-reported outcomes, were included in the standard set of outcomes, covering survival, complication rates, recurrence of disease, readmissions after treatment, and quality of life (QoL). Fourteen case-mix variables were included. The EQ-5D and European Organisation for Research and Treatment of Cancer quality of life (EORTC-QLQ) questionnaires were recommended to measure QoL. Conclusions: We developed the first standardised set of patient-centred outcomes for muscle-invasive and metastatic BCa. The sue of this set enables institutions to monitor, compare, and improve the quality of BCa care, on an international level. Patient summary: Our group of healthcare professionals and patient representatives recommended a standardised set of patient-centred outcomes to be followed during the treatment of patients with muscle-invasive or metastatic bladder cancer, in order to monitor, compare, and improve the quality of care.",

keywords = "Invasive bladder cancer, Metastatic, Muscle invasive, Patient-reported outcome measures, Standard set of outcome measures",

author = "{for the Santeon MIBC Study Group} and Reesink, {Daan J.} and {van de Garde}, {Ewoudt M.W.} and Somford, {Diederik M.} and Meijer, {Richard P.} and Maartje Los and Biesma, {Douwe H.} and Simon Horenblas and {van Melick}, {Harm H.E.} and {van der Nat}, {Paul B.}",

note = "Funding Information: Funding/Support and role of the sponsor: This research received a grant from Roche Nederland B.V. to perform this study (grant number: ML40374 ; Daan J. Reesink). The funders had no role in the study design, data collection, analysis, and decision regarding where to publish this manuscript. Publisher Copyright: {\textcopyright} 2021 The Author(s)",

year = "2021",

month = apr,

day = "1",

doi = "10.1016/j.euros.2021.01.014",

language = "English",

volume = "26",

pages = "18--26",

journal = "European Urology Open Science",

issn = "2666-1691",

publisher = "Elsevier BV",

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TY - JOUR

T1 - Development of the First Patient-centred Set of Outcomes for Muscle-invasive and Metastatic Bladder Cancer

T2 - A Multicentre Initiative

AU - for the Santeon MIBC Study Group

AU - Reesink, Daan J.

AU - van de Garde, Ewoudt M.W.

AU - Somford, Diederik M.

AU - Meijer, Richard P.

AU - Los, Maartje

AU - Biesma, Douwe H.

AU - Horenblas, Simon

AU - van Melick, Harm H.E.

AU - van der Nat, Paul B.

N1 - Funding Information: Funding/Support and role of the sponsor: This research received a grant from Roche Nederland B.V. to perform this study (grant number: ML40374 ; Daan J. Reesink). The funders had no role in the study design, data collection, analysis, and decision regarding where to publish this manuscript. Publisher Copyright: © 2021 The Author(s)

PY - 2021/4/1

Y1 - 2021/4/1

N2 - Background: To improve and compare outcomes in healthcare, it is necessary to standardise outcome measurements. There are no widely accepted standardised outcome measures reflecting quality of care for bladder cancer (BCa) patients. Objective: The aim of this study was to create a standardised set of outcomes for patients with muscle-invasive or metastatic BCa, using the value-based healthcare principles. Design, setting, and participants: A multidisciplinary working group of 25 healthcare professionals and patient representatives was assembled, to develop the set. Outcome measurements and statistical analysis: We used an online RAND-modified Delphi process to prioritise, discuss, and reach consensus regarding the outcomes, case-mix variables, and treatment factors. Results and limitations: Recognising the heterogeneity of patients with BCa, the working group defined the scope as patients with muscle-invasive and metastatic BCa. A total of 24 outcomes, including ten patient-reported outcomes, were included in the standard set of outcomes, covering survival, complication rates, recurrence of disease, readmissions after treatment, and quality of life (QoL). Fourteen case-mix variables were included. The EQ-5D and European Organisation for Research and Treatment of Cancer quality of life (EORTC-QLQ) questionnaires were recommended to measure QoL. Conclusions: We developed the first standardised set of patient-centred outcomes for muscle-invasive and metastatic BCa. The sue of this set enables institutions to monitor, compare, and improve the quality of BCa care, on an international level. Patient summary: Our group of healthcare professionals and patient representatives recommended a standardised set of patient-centred outcomes to be followed during the treatment of patients with muscle-invasive or metastatic bladder cancer, in order to monitor, compare, and improve the quality of care.

AB - Background: To improve and compare outcomes in healthcare, it is necessary to standardise outcome measurements. There are no widely accepted standardised outcome measures reflecting quality of care for bladder cancer (BCa) patients. Objective: The aim of this study was to create a standardised set of outcomes for patients with muscle-invasive or metastatic BCa, using the value-based healthcare principles. Design, setting, and participants: A multidisciplinary working group of 25 healthcare professionals and patient representatives was assembled, to develop the set. Outcome measurements and statistical analysis: We used an online RAND-modified Delphi process to prioritise, discuss, and reach consensus regarding the outcomes, case-mix variables, and treatment factors. Results and limitations: Recognising the heterogeneity of patients with BCa, the working group defined the scope as patients with muscle-invasive and metastatic BCa. A total of 24 outcomes, including ten patient-reported outcomes, were included in the standard set of outcomes, covering survival, complication rates, recurrence of disease, readmissions after treatment, and quality of life (QoL). Fourteen case-mix variables were included. The EQ-5D and European Organisation for Research and Treatment of Cancer quality of life (EORTC-QLQ) questionnaires were recommended to measure QoL. Conclusions: We developed the first standardised set of patient-centred outcomes for muscle-invasive and metastatic BCa. The sue of this set enables institutions to monitor, compare, and improve the quality of BCa care, on an international level. Patient summary: Our group of healthcare professionals and patient representatives recommended a standardised set of patient-centred outcomes to be followed during the treatment of patients with muscle-invasive or metastatic bladder cancer, in order to monitor, compare, and improve the quality of care.

KW - Invasive bladder cancer

KW - Metastatic

KW - Muscle invasive

KW - Patient-reported outcome measures

KW - Standard set of outcome measures

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DO - 10.1016/j.euros.2021.01.014

M3 - Article

AN - SCOPUS:85101045136

SN - 2666-1691

VL - 26

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JO - European Urology Open Science

JF - European Urology Open Science

ER -

Development of the First Patient-centred Set of Outcomes for Muscle-invasive and Metastatic Bladder Cancer: A Multicentre Initiative

Abstract

Bibliographical note

Funding

Keywords

UN SDGs

Access to Document

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