Introduction and hypothesis
Stress urinary incontinence (SUI) and pelvic organ prolapse (POP) are common pelvic floor disorders (PFDs). Owing to significant adverse events associated with mesh-related pelvic floor procedures (PFPs) in a proportion of the surgically treated population, and deficits in collection and reporting of these events, the Australian Government identified an urgent need for a tracking mechanism to improve safety and quality of care. The Australasian Pelvic Floor Procedure Registry (APFPR) was recently established following the 2018 Senate Committee Inquiry with the aim of tracking outcomes of PFP involving the use of devices and/or prostheses, with the objective of improving the health outcomes of women who undergo these procedures. This paper will describe the APFPR’s aims, development, implementation and possible challenges on the way to its establishment.
Methods
The APFPR has been developed and implemented in accordance with the national operating principles of clinical quality registries (CQRs). The minimum datasets (MDS) for the registry’s database have been developed using a modified Delphi process, and data are primarily being collected from participating surgeons. Patient recruitment is based on an opt-out approach or a waiver of consent. Patient-reported outcome measures (PROMs) providing additional health and outcome information will be obtained from participating women to support safety monitoring of mesh-related adverse events.
Results
Currently in the Australasian Pelvic Floor Procedure Registry (APFPR) there are 32 sites from various jurisdictions across Australia,
that have obtained relevant ethics and governance approvals to start patient recruitment
and data collection as of January 2023. Additionally, there are two sites that
are awaiting governance review and five sites that are having documentation compiled
for submission. Seventeen sites have commenced patient registration and have
entered data into the database. Thus far, we have 308 patients registered in
the APFPR database. The registry also published its first status report and a
consumer-friendly public report in 2022.
Conclusions
The registry will act as a systematic tracking mechanism by collecting outcomes on PFP, especially those involving devices and/or prostheses to improve safety and quality of care.
Advocacy plays a vital role in ensuring that mental health consumers' rights are maintained. However, the primary issues for which consumers seek advocacy support remain unknown. Understanding these issues provides a sound basis from which advocacy organisations may develop a clear service delivery focus. This study addresses the literature gap through presenting a qualitative analysis of 60 records from an advocacy service. Four major themes emerged, across which two key issues were dominant: the sense of fearfulness and disempowerment. These issues accentuate the importance of advocates in enhancing the agency of mental health consumers.
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