TY - JOUR
T1 - Development of the First Patient-centred Set of Outcomes for Muscle-invasive and Metastatic Bladder Cancer
T2 - A Multicentre Initiative
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
Y1 - 2021/4
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
UR - https://www.scopus.com/pages/publications/85101045136
U2 - 10.1016/j.euros.2021.01.014
DO - 10.1016/j.euros.2021.01.014
M3 - Article
C2 - 34337504
AN - SCOPUS:85101045136
SN - 2666-1691
VL - 26
SP - 18
EP - 26
JO - European Urology Open Science
JF - European Urology Open Science
ER -