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Background Patient Reported Outcome Measures (PROMs) are being increasingly introduced in clinical registries, providing a personal perspective on the expectations and impact of treatment. The aim of this study was to describe response rates (RR) to PROMs in clinical registries and databases and to examine the trends over time, and how they change with the registry type, region and disease or condition captured. Methods We conducted a scoping literature review of MEDLINE and EMBASE databases, in addition to Google Scholar and grey literature. All English studies on clinical registries capturing PROMs at one or more time points were included. Follow up time points were defined as follows: baseline (if available), < 1 year, 1 to < 2 years, 2 to < 5 years, 5 to < 10 years and 10 + years. Registries were grouped according to regions of the world and health conditions. Subgroup analyses were conducted to identify trends in RRs over time. These included calculating average RRs, standard deviation and change in RRs according to total follow up time. Results The search strategy yielded 1,767 publications. Combined with 20 reports and four websites, a total of 141 sources were used in the data extraction and analysis process. Following the data extraction, 121 registries capturing PROMs were identified. The overall average RR at baseline started at 71% and decreased to 56% at 10 + year at follow up. The highest average baseline RR of 99% was observed in Asian registries and in registries capturing data on chronic conditions (85%). Overall, the average RR declined as follow up time increased. Conclusion A large variation and downward trend in PROMs RRs was observed in most of the registries identified in our review. Formal recommendations are required for consistent collection, follow up and reporting of PROMs data in a registry setting to improve patient care and clinical practice. Further research studies are needed to determine acceptable RRs for PROMs captured in clinical registries.

Clinical quality registries (CQRs) are playing an increasingly important role in improving health outcomes and reducing health care costs. CQRs are established with the purpose of monitoring quality of care, providing feedback, benchmarking performance, describing pattern of treatment, reducing variation and as a tool for conducting research. To synthesise the impact of clinical quality registries (CQRs) as an 'intervention' on (I) mortality/survival; (II) measures of outcome that reflect a process or outcome of health care; (III) health care utilisation; and (IV) healthcare-related costs. The following electronic databases were searched: MEDLINE, EMBASE, CENTRAL, CINAHL and Google Scholar. In addition, a review of the grey literature and a reference check of citations and reference lists within articles was undertaken to identify relevant studies in English covering the period January 1980 to December 2016. The PRISMA-P methodology, checklist and standard search strategy using pre-defined inclusion and exclusion criteria and structured data extraction tools were used. Data on study design and methods, participant characteristics attributes of included registries and impact of the registry on outcome measures and/or processes of care were extracted. We identified 30102 abstracts from which 75 full text articles were assessed and finally 17 articles were selected for synthesis. Out of 17 studies, six focused on diabetes care, two on cardiac diseases, two on lung diseases and others on organ transplantations, rheumatoid arthritis, ulcer healing, surgical complications and kidney disease. The majority of studies were \"before after\" design (#11) followed by cohort design (#2), randomised controlled trial (#2), experimental non randomised study and one cross sectional comparison. The measures of impact of registries were multifarious and included change in processes of care, quality of care, treatment outcomes, adherence to guidelines and survival. Sixteen of 17 studies demonstrated positive findings in their outcomes after implementation of the registry. Despite the large number of published articles using data derived from CQRs, few have rigorously evaluated the impact of the registry as an intervention on improving health outcomes. Those that have evaluated this impact have mostly found a positive impact on healthcare processes and outcomes. PROSPERO CRD42015017319.

Globally, road transport accidents contribute significantly to mortality and burden of disability. Up to 50 million people suffer a transport-related non-fatal injury each year, which often leads to long-term disability. A substantial number of people with minor injuries struggle to recover and little is known about the factors leading to poor or non-recovery. The aim of this paper is to present a systematic review of biopsychosocial factors related to poor or non-recovery after a minor transport-related injury. Studies were selected through searches of PubMed, Medline, Embase, and Cochrane library. Methodological quality was assessed using a Scottish Intercollegiate Guidelines Network (SIGN) critical appraisal checklist for quantitative cohort studies and Standards for Reporting Qualitative Research (SRQR) checklist for qualitative articles. Data were extracted using the Cochrane data extraction tool based on the biopsychosocial model of health (BPS). In total, there were 37 articles included. However, heterogeneity of the techniques and tools used to assess factors and outcomes across studies meant that pooling of results to determine biopsychosocial factors most predictive of poor or non-recovery was not possible. Hence, a narrative synthesis was conducted and shown multiple factors to be associated with poorer outcomes or non-recovery, most being identified in the biological and psychological domain of the BPS model. Factors that were the most representative across studies and have shown to have the strongest associations with poor or non-recovery were high initial pain intensity, pain duration and severity, pre-accident physical and mental health status and pain catastrophising. This review demonstrates the complexity of recovery and a challenge in reporting on predictors of recovery. It is evident that a range of multi-factorial biopsychosocial factors impact recovery. These factors are often inter-connected and multi-faceted and therefore, it was not feasible to select or focus on one single factor. In defining the most predictive factors, further research is required, yet the consensus around which tools to use to measure recovery outcomes is needed and is highly recommended. Regardless of the descriptive nature, the review demonstrated that high levels of post-injury pain are associated with poorer outcomes such as chronic pain and physical and mental disability. Therefore, early targeting of modifiable factors such as pain, pain catastrophizing and arising comorbidities such as PTSD, depression and anxiety may assist in reducing chronic pain and ongoing related disabilities. Systematic review protocol was registered in International Prospective Register for Systematic Reviews (PROSPERO) on 14 December 2016. Registration number CRD42016052276.

Introduction and hypothesisThe objective was to overview the literature on the existing pelvic floor procedure registries and databases and to identify patient demographic, clinical and/or patient-reported data items for inclusion in the Australasian Pelvic Floor Procedure Registry (APFPR) Minimum Data Set (MDS).MethodsWe conducted a literature search on the MEDLINE, Embase, CINAHL and PsycINFO databases in addition to Google Scholar and grey literature to identify studies in the period January 2008 to January 2020. All were English studies of registries and databases on female adults undergoing surgery for pelvic floor disorders including stress urinary incontinence (SUI) and pelvic organ prolapse (POP). Studies were assessed on demographic and clinical patient characteristics, procedure or treatment type, health-related quality of life, adverse events and safety outcomes, captured by pelvic floor procedure registries or databases that have been established to date.ResultsFrom 1662 studies, 29 publications describing 22 different pelvic floor registries and databases were included for analysis, 12 (55%) of which were multicentre. Six (27%) registries and databases involved solely SUI, eight (36%) were regarding POP, and the remaining eight (36%) focussed on both conditions. The majority of registries and databases captured similar details on patient characteristics, comorbidities and other clinical features, procedure or treatment type, health-related quality of life, adverse events, safety and efficacy.ConclusionThe findings of this scoping review will assist in determining the MDS for the APFPR, an initiative of the Australian government, to improve health and quality of life outcomes of women who undergo pelvic floor reconstructive procedures.

Background Rare diseases (RDs) affect approximately 8% of all people or > 400 million people globally. The Australian Government’s National Strategic Action Plan for Rare Diseases has identified the need for a national, coordinated, and systematic approach to the collection and use of RD data, including registries. Rare disease registries (RDRs) are established for epidemiological, quality improvement and research purposes, and they are critical infrastructure for clinical trials. The aim of this scoping review was to review literature on the current state of RDRs in Australia; to describe how they are funded; what data they collect; and their impact on patient outcomes. Methods We conducted a literature search on MEDLINE, EMBASE, CINAHL and PsychINFO databases, in addition to Google Scholar and grey literature. Dissertations, government reports, randomised control trials, conference proceedings, conference posters and meeting abstracts were also included. Articles were excluded if they did not discuss RDs or if they were written in a language other than English. Studies were assessed on demographic and clinical patient characteristics, procedure or treatment type and health-related quality of life captured by RDRs or databases that have been established to date. Results Seventy-four RDRs were identified; 19 were global registries in which Australians participated, 24 were Australian-only registries, 10 were Australia and New Zealand based, and five were Australian jurisdiction-based registries. Sixteen “umbrella” registries collected data on several different conditions, which included some RDs, and thirteen RDRs stored rare cancer-specific information. Most RDRs and databases captured similar types of information related to patient characteristics, comorbidities and other clinical features, procedure or treatment type and health-related quality of life measures. We found considerable heterogeneity among existing RDRs in Australia, especially with regards to data collection, scope and quality of registries, suggesting a national coordinated approach to RDRs is required. Conclusion This scoping review highlights the current state of Australian RDRs, identifying several important gaps and opportunities for improvement through national coordination and increased investment.

Background: Clinical quality registries (CQRs) systematically monitor the quality of healthcare by routinely collecting and reporting health-related information. The collection of patient reported measures (PRMs) by CQRs provides a personal perspective on the expectations and impacts of treatment. Reporting of CQR-collected PRMs for quality improvement (QI) is highly variable. Objectives: To develop a best practice guide (BPG) for CQRs, clinicians and health services to support high-quality and transparent reporting of PRM data for QI purposes. Methods: The project comprised four stages. The first sought to describe how PRMs were reported for QI purposes in Australia and internationally. The second stage included seven focus groups with 20 Australian CQRs to identify existing practices, issues and impacts regarding PRMs reporting. During stage 3, findings from the literature and focus groups were used to draft a preliminary BPG. Finally, expert workshops involving PRMs experts, consumers, clinicians and representatives from CQRs were convened to refine a preliminary BPG. Results: We identified 61 international and 45 Australian CQRs that reported PRMs for QI purposes. PRMs were used for shared decision-making in clinical encounters, for developing clinical decision aids, to revise treatment guidelines and to monitor complications after hospital discharge. Several themes emerged from the focus groups. These included: purpose and context, funding and resource requirements, consumer involvement, clinician training, instrument selection and administration, outlier identification, visualisation and interpretation of the data. A preliminary BPG was refined during the workshop discussions. Conclusion: An increasing number of CQRs use PRMs to enhance QI reporting, however there are no published guidelines currently to support this. Through identifying existing practices, methods and techniques that CQRs use to report PRMs, we developed a practical guideline to support CQRs and standardise their PRMs reporting for QI purposes, with the overarching goal of optimising the value of PRM data within CQRs.

BackgroundTo determine patient-reported outcome measures (PROMs) which may be suitable for incorporation into the Australian Cystic Fibrosis Data Registry (ACFDR) by identifying PROMs administered in adult and paediatric cystic fibrosis (CF) populations in the last decade.MethodsWe searched MEDLINE, EMBASE, Scopus, CINAHL, PsycINFO and Cochrane Library databases for studies published between January 2009 and February 2019 describing the use of PROMs to measure health-related quality of life (HRQoL) in adult and paediatric patients with CF. Validation studies, observational studies and qualitative studies were included. The search was conducted on 13 February 2019. The COnsensus-based Standards for the selection of health Measurement INstruments Risk of Bias Checklist was used to assess the methodological quality of included studies.ResultsTwenty-seven different PROMs were identified. The most commonly used PROMs were designed specifically for CF. Equal numbers of studies were conducted on adult (32%, n=31), paediatric (35%, n=34) and both (27%, n=26) populations. No PROMs were used within a clinical registry setting previously. The two most widely used PROMs, the Cystic Fibrosis Questionnaire—Revised (CFQ-R) and the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), demonstrated good psychometric properties and acceptability in English-speaking populations.DiscussionWe found that although PROMs are widely used in CF, there is a lack of reporting on the efficacy of methods and timepoints of administration. We identified the CFQ-R and CFQoL as the most suitable for incorporation in the ACFDR as they captured significant effects of CF on HRQoL and were reliable and valid in CF populations. These PROMs will be used in a further qualitative study assessing patients’ with CF and clinicians’ perspectives toward the acceptability and feasibility of incorporating a PROM in the ACFDR.PROSPERO registration numberCRD42019126931.

Background The Australasian Pelvic Floor Procedure Registry (APFPR) captures clinical and surgical data in women undergoing pelvic floor procedures. The inclusion of patient reported outcome measures (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. This study aimed to evaluate the acceptability of seven PROMs for women with pelvic organ prolapse (POP) and to determine the most suitable instrument for the APFPR. Methods Semi-structured qualitative interviews were conducted with women with POP (n = 15) and their treating clinicians (n = 11) in Victoria, Australia. Interview topics covered appropriateness, content, and acceptability of seven POP-specific instruments identified through the literature to determine their suitability and acceptability for inclusion in the APFPR. We analysed the interview data using conventional content analysis. Results All study participants agreed that PROMs were needed for the APFPR. Both women and clinicians suggested that some of the instruments were ambiguous, too long and confusing. The Australian Pelvic Floor Questionnaire was accepted widely amongst women and clinicians and recommended for inclusion in the APFPR. All participants agreed it would be appropriate to capture PROMs before surgery, and then followed up post-surgically. Email, phone call or postal mail-out were the preferred options for PROMs data collection. Conclusion Most women and clinicians supported incorporating PROMs in the APFPR. Study participants believed that capturing PROMs would have potential use in individual care and improve outcomes of women with POP.

Background Women undergoing pelvic floor procedures (PFPs) to treat their pelvic floor disorder (PFD) may experience pain, affecting their health-related quality of life. Current patient-reported outcome measures (PROMs) assess pain but are not specific to PFD post-surgery. This study was part of developing a new pain-specific PROM for women following PFP, aimed to (1) refine an existing conceptual framework to better understand post- post-PFP in women, (2) draft potential items, and (3) develop a consensus set of items for the new measure to ensure content validity. Methods A mixed-methods approach was used to address the aim in three phases: (1) refining an existing conceptual framework for post-PFP pain based on feedback from semi-structured interviews with 16 women, (2) drafting potential items based on the revised framework, and (3) conducting an online two-round Delphi survey with 17 experts ranked to rank, review items, then produce a consensus set. Results The interviews conducted identified key attributes of pain that need to be addressed in the new pain instrument for PFP. From the interviews, 114 items were drafted under eight framework domains, and then presented to a panel in the Delphi survey. After two Delphi rounds, 35 items were finalised, with 11 equally merged or deleted, resulting in a final set of 35 items. Conclusion This is the first study to develop a set of items for the new pain measure based on the experiences and expertise of women and clinicians. Inclusion of the items can offer valuable insight into pain after PFP.