The Australasian Pelvic Floor Procedure Registry: Not before time

Daly, J Oliver; Ahern, Susannah; Herkes, Robert; O’Connell, Helen

doi:10.1111/ajo.13030

Cited by 19 publications

(16 citation statements)

References 4 publications

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“…Indeed, use of IVF is so ubiquitous in Australia that a Commonwealth Government‐funded website aiming to assist Australian health consumers pick an IVF clinic has recently been launched (http://www.yourivfsuccess.com.au). Similarly, management of POP and urinary incontinence was subject to multiple inquiries, including by the Australian Senate, resulting in national guidelines on treatment published by the Australian Council on Safety and Quality in Healthcare (ACSQHC) 6 . Yet, despite an enormous amount of expense and work in these subspecialty areas, it was evident that little consideration was given to Aboriginal and Torres Strait Islander women who might be affected by the common conditions of infertility, POP, and urinary incontinence.…”

Section: Introductionmentioning

confidence: 99%

“…Similarly, management of POP and urinary incontinence was subject to multiple inquiries, including by the Australian Senate, resulting in national guidelines on treatment published by the Australian Council on Safety and Quality in Healthcare (ACSQHC). 6 Yet, despite an enormous amount of expense and work in these subspecialty areas, it was evident that little consideration was given to Aboriginal and Torres Strait Islander women who might be affected by the common conditions of infertility, POP, and urinary incontinence. This is despite Aboriginal and Torres Strait Islander women having a higher prevalence of the risk factors for these conditions.…”

mentioning

confidence: 99%

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A silent burden—prolapse, incontinence, and infertility in Australian Aboriginal and Torres Strait Islander women: A systematic search and narrative review

Clarke

Whitson

Williams

et al. 2021

Intl J Gynecology & Obste

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Background Pelvic organ prolapse (POP), urinary incontinence, and infertility are all prevalent conditions associated with considerable reduction in quality of life. As a group, Aboriginal and Torres Strait Islander women may be at higher risk of these conditions, but studies are scarce. Objective To review the literature pertaining to the epidemiology, diagnosis, and management of these conditions in Indigenous Australian women. Search strategy Medline, Embase, and Scopus were searched for articles published between 1980 and 2021 pertaining to these conditions in Indigenous Australian women. Selection criteria Studies that did not directly address the epidemiology, diagnosis, and management of these conditions were excluded. Main results It was possible to identify only 11 papers dealing with these conditions in Indigenous Australian women. Only one dealt with POP and was a retrospective audit of a health outreach program in the Northern Territory concluding that there was significant underreporting of the condition. Five papers dealt with urinary incontinence and, again, described significant underreporting and poor referral pathways. Five papers reported small studies about infertility, one reporting poor engagement from clinical directors. Conclusion It was concluded that despite the importance of these conditions, there is almost no body of research and this is an urgent national problem.

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Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

A silent burden—prolapse, incontinence, and infertility in Australian Aboriginal and Torres Strait Islander women: A systematic search and narrative review

Clarke

Whitson

Williams

et al. 2021

Intl J Gynecology & Obste

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“…The Australian Pelvic Floor Procedure Registry (APFPR) [11] collects clinical and surgical information on patients undergoing pelvic oor procedures including any complications or adverse events related to the treatment from both surgeons and patients. The inclusion of PROMs in the APFPR is a critical activity providing the additional patient perspective of their condition prior to surgery as well as monitoring beyond the usual post-surgical follow-up time, adding to the information on both the effectiveness and safety of mesh-related procedures.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of the acceptability of patient-reported outcome measures in women following pelvic floor procedures

Ruseckaite

Bavor

Marsh

et al. 2021

Preprint

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Purpose. Patient-reported outcome measures (PROMs) are valuable tools in evaluating the outcomes of surgical treatment health-related quality of life (HRQoL) of women with stress urinary incontinence (SUI), and may be incorporated into related clinical quality registries. The aim of this study was to assess the feasibility and acceptability of incorporating PROMs into the Australian Pelvic Floor Procedure Registry (APFPR). Methods. Semi-structured qualitative interviews were conducted with women with SUI (N = 12) and their managing clinicians (N = 11) in Victoria, Australia. Interview topicscovered content and face validity, appropriateness, and acceptability of three incontinence-specific, two pain, one anxiety and depression, one sexual function and one patient global impression of improvement instruments identified through the literature to determine their suitability and acceptability for the APFPR. We analysed interview data into topics using conventional content analysis.Results. Study participants agreed that PROMs were needed for the APFPR. Both participant groups suggested that some of the instruments were ambiguous, therefore, only three instruments (one incontinence-specific, sexual function and patient global impression of improvement) will be included in the APFPR. Both clinicians and women agreed it would be appropriate to answer PROMs at baseline and then at six and 12 months post-surgically. Email, phone call and mail-out of the instruments were the preferred options for administration. Conclusions. Most women and clinicians supported the feasibility of incorporating PROMs in the APFPR. Participants believed the PROMs would demonstrate useful aggregate HRQoL data, facilitate research and have potential for use in individual care.

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“…Denmark mandated their database so that it could link to other national databases using a unique patient reference. Other databases such as the AUGS AQUIRE database [ 7 ] and the Australasian Pelvic Floor Procedure Registry [ 8 ] are in the process of developing modules, and there is a clear need to define a MDS to leverage the value of large data sets.…”

Section: Introductionmentioning

confidence: 99%

Minimum standards for reporting outcomes of surgery in urogynaecology

et al. 2020

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Introduction and hypothesis The IUGA special interest group (SIG) identified a need for a minimum data set (MDS) to inform outcome measurements to be included and simplify data capture and standardise reporting for data collection systems. To define a minimum data set for urogynaecological surgical registries. Methods Existing registries provide an inventory of items. A modified Delphi approach was used to identify a MDS. At each stage reviewers ranked data points and used free text to comment. The rating used a scale of 0–10 at each review and a traffic light system rated the scores as desirable, highly desirable and mandatory. The scores were collated and reported back to clinicians prior to the further rounds. Outliers were highlighted and reviewers re-assessed prior to repeating the process. A comparison of the MDS was made with published outcomes. Results Reviewers were from the outcome SIG with emphasis on widespread representation. Fifteen clinicians from eight countries were involved. Four reviewers dissected the existing databases. Eighty data points were considered in four categories, background, preoperative, intraoperative and postoperative. Consensus was reached by the third round. Two points were added on review (date of surgery and urodynamics). Three background points, five preoperative points, seven intraoperative points and nine postoperative points were identified giving 24 minimum data points in the final recommendation. Conclusions An MDS has been developed for urogynaecological surgical registries. These should be mandatory points which then allow larger varying points to be assessed. These points correspond well to data points used in published papers from established databases.

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The Australasian Pelvic Floor Procedure Registry: Not before time

Cited by 19 publications

References 4 publications

A silent burden—prolapse, incontinence, and infertility in Australian Aboriginal and Torres Strait Islander women: A systematic search and narrative review

A silent burden—prolapse, incontinence, and infertility in Australian Aboriginal and Torres Strait Islander women: A systematic search and narrative review

Evaluation of the acceptability of patient-reported outcome measures in women following pelvic floor procedures

Minimum standards for reporting outcomes of surgery in urogynaecology

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