Accepted for/Published in: JMIR Research Protocols
Date Submitted: Mar 22, 2021
Open Peer Review Period: Mar 22, 2021 - May 17, 2021
Date Accepted: Apr 28, 2022
(closed for review but you can still tweet)
The development, testing and implementation of a Belgian Patient REported experience measure for PAncrREatic cancer care (PREPARE) project. Protocol of a Multi-Method research project
ABSTRACT
Background:
Pancreatic cancer patients do not feel involved in the development of their treatment and care plans. In Belgium these plans are decided on during multidisciplinary team meetings. However, limited time is spent on the discussion of the preferences of the patient during these meetings. This research project wants to develop a Patient Reported Experience Measure (PREM) for pancreatic cancer and assess if its use can support collaborative treatment decision making.
Objective:
This article aims to outline the protocol for a multi-method research project to improve person-centered pancreatic cancer care in Belgium. Three sub-objectives are pursued: to develop a PREM measuring the experiences of care-related aspects in pancreatic cancer care; to validate the PREM, and to develop and evaluate an (educational) intervention to support the use of the PREM results.
Methods:
For the development of the PREM an exploratory mixed-methods study design will be used. The study will start with a survey followed by a telephone interview involving pancreatic cancer patients and digestive oncology health care professionals. Study two is the testing of the content and construct validity of the PREM. Study three involves the implementation study according to the MRC framework of a complex intervention introducing the PREM in practice. The effectiveness of the intervention will be investigated using a Pragmatic Randomized Controlled Trial (PrCT) study design.
Results:
The protocol presents the entire structure of the research project. The results of each study are necessary to conduct the following study.
Conclusions:
The poor prognosis of pancreatic cancer patients should not be considered as a hurdle to not study this patient population group. Involving patients in the research and decision-making processes early on is key. This project aims to realize a scientifically sound research process providing research outputs that can easily and timely be implemented in the care trajectory of pancreatic cancer patients. This research project will also lead to recommendations on how to involve pancreatic cancer patients and how the methodology of this research project can be translated to other patient groups.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.