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The 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). We 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. From 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. The 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.

Clinical registries that monitor and review outcomes for patients with cystic fibrosis have existed internationally for many decades. However, their purpose continues to evolve and now includes the capability to support clinical effectiveness research, clinical trials and Phase IV studies, and international data comparisons and projects. To achieve this, registries must regularly update the information that they collect and ensure design that is adaptable and flexible to changing needs. The Australian Cystic Fibrosis Data Registry commenced in 1998, and in 2018-19 undertook a transformation to enable it to meet the needs of multiple stakeholders into the future. This included a comprehensive, multidisciplinary review of the registry's data elements, and a redesign and rebuild of the registry's database. The data element review comprised the processes of alignment, comparison, selection, consolidation, revision and definition of finalised data elements. The database redesign included attention to each of the registry functions of data collection, storage and management, and reporting. The revision of a national data collection system is a time-intensive process, and requires significant clinical and other expert engagement. The resulting database, while being continually refined, is now fit for purpose to support Australian clinicians and patients with CF to receive best practice care.

Venous leg ulcers (VLUs) are a common chronic often undertreated condition, which affects individual's health-related quality of life (HRQoL). Numerous patient-reported outcome measures (PROMs) have been validated to capture HRQoL in patients with VLUs. However, available instruments contain many items, are hard to use in clinical practice, and present with weak responsiveness. This study aims to determine clinical utility of an existing VLU-QoL instrument and to develop a comprehensive PROs assessment framework to guide clinical practice treatment in people with VLUs in Australia. Semi-structured qualitative interviews were conducted with VLU patients (N = 13) and their managing clinicians (N = 6) in Victoria, Australia. Interview topics covered content and face validity, appropriateness, and acceptability of the VLU-QoL instrument to determine suitable and appropriate for use in clinical practice. Clinicians and patients agreed that a VLU-QoL instrument was needed in clinical practice. Both clinicians and patients agreed it would be appropriate to answer PROMs questions prior to consultation with clinicians every 3-6 months. However, patients considered that some of the questions are ambiguous and too technical. Patients reported that it would be useful to include additional items relating to daily wound care, compression bandaging, and dressings. Clinicians reported that the VLU-QoL instrument was too long and required restructuring to facilitate utility in practice. A conceptual framework for HRQoL in VLUs included traditional HRQoL components and VLU-specific issues. Overall, the VLU-QoL was well accepted, although changes to make it more concise, comprehensive, and to clearly reflect consumers' perspectives were lacking. The proposed conceptual framework will inform the development of a new PROM for use by clinicians and patients in clinical settings.

Rasa Ruseckaite, Ashika D Maharaj, Karolina Krysinska, Joanne Dean, Susannah Ahern Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, AustraliaCorrespondence: Rasa RuseckaiteDepartment of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria 3004, AustraliaTel +61 3 9903 0437Email rasa.ruseckaite@monash.eduPurpose: Patient-centred and value-based health-care organisations are increasingly recognising the importance of the patient perspective in the measurement and evaluation of health outcomes. This has been primarily implemented using patient-reported outcome measures (PROMs). Clinical quality registries (CQRs) are specifically designed to improve direct clinical care, benchmark health-care provision and inform health service planning and policy. Despite CQRs having incorporated the patient perspective to support the evaluation of health-care provision, no evidence-based guidelines for inclusion of PROMs in CQRs exist. This has led to substantial heterogeneity in capturing and reporting PROMs within this setting. This publication is the first in a series describing the development of evidence-informed guidelines for PROMs inclusion within CQRs in Australia.Methods: This study consisted of three components: 1) a literature review of existing evidence of guidelines, enablers, barriers, and lessons learnt of PROMs use within the CQRs setting; 2) a survey of Australian CQRs to determine current practices for PROMs use and reporting; and 3) development of a preliminary conceptual framework for PROMs inclusion in CQRs.Results: Content analysis of the literature review and survey of 66 Australian registries elicited eight categories for the conceptual framework. The framework covers eight components: rationale, setting, ethics, selection of PROMs, administration, data management, statistical methods, feedback, and reporting.Conclusion: We developed a preliminary conceptual framework, which classified findings, from both the literature and the survey, into broad categories ranging from initial development to outcome dissemination providing the structure for development of guidelines in the next phase of this project, engaging national and international leaders in health-related quality of life research, clinicians, researchers, patient advocates and consumers.Keywords: quality of life, registry, outcomes, patient voice

Objective Hereditary endocrine tumors (HET) were among the first group of tumors where predisposition syndromes were recognized. The utility of genetic awareness is having the capacity to treat at an earlier stage, screen for other manifestations and initiate family cascade testing. The aim of this narrative review is to describe the most common hereditary syndromes associated with frequently encountered endocrine tumors, with an emphasis on screening and surveillance. Methods A MEDLINE search of articles for relevance to endocrine tumors and hereditary syndromes was performed. Results The most common hereditary syndromes associated with frequently encountered endocrine tumors are described in terms of prevalence, genotype, phenotype, penetrance of malignancy, surgical management, screening, and surveillance. Conclusion Medical practitioners involved in the care of patients with endocrine tumors should have an index of suspicion for an underlying hereditary syndrome. Interdisciplinary care is integral to successful, long-term management of such patients and affected family members.

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 topics covered 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 6- and 12-month postsurgically. Email, phone call and mail-out of the instruments were the preferred options for administration. Conclusion Most women and clinicians supported the feasibility of incorporating PROMs in the APFPR. Participants believed the PROMs would demonstrate useful aggregate HRQoL data and have potential for use in individual care.

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.

A key measure of lung function in people with Cystic Fibrosis (CF) is Forced Expiratory Volume in the first second FEV1 percent predicted (FEV1pp). This study aimed to address challenges in identifying predictors of FEV1pp, specifically dealing with non-linearity and the censoring effect of death. Data was obtained from a large multi-centre Australian Cystic Fibrosis Data Registry (ACFDR). A linear mixed model was used to study FEV1pp as the endpoint. There were 3655 patients (52.4% male) included in our study. Restricted cubic splines were used to fit the non-linear relationship between age of visit and FEV1pp. The following predictors were found to be significant in the multivariate model: age of patient at visit, BMI z-score, age interaction with lung transplantation, insulin dependent diabetes, cirrhosis/portal hypertension, pancreatic insufficiency, Pseudomonas aeruginosa infection and baseline variability in FEV1pp. Those with P. aeruginosa infection had a lower mean difference in FEV1pp of 4.7 units, p

ObjectivesTo describe among individuals with dementia: (1) self-reported awareness of, and engagement in, advance care planning; (2) presence of advance care planning documentation in the health record and (3) concordance between self-reported completion of advance care planning and presence of documentation in the health record.MethodsAn Australian prospective multicentre audit and cross-sectional survey. Individuals diagnosed with dementia who were able to speak English and were judged by a healthcare provider as having decision-making capacity were recruited from self-selected hospitals, residential aged care facilities and general practices across Australia.ResultsFifty-two people with dementia completed surveys and were included. Overall, 59.6% of participants had heard about advance care planning and 55.8% had discussed advance care planning with someone, most often a family member (48.1%). While 38.5% of participants had appointed a medical substitute decision maker, only 26.9% reported that they had written down their values and preferences for future care. Concordance between self-reported completion of advance care planning and presence of documentation in the health record was low (56.8%, κ=0.139; 57.7%, κ=0.053).ConclusionEffective models that promote discussion, documentation and accessible storage of advance care planning documents for people with dementia are needed.

Background Patients with cystic fibrosis (CF) can struggle with burdensome symptoms and treatment regimens that negatively affect every aspect of their life. As physiological parameters can fail to capture these complications, the assessment of health-related quality of life (HRQOL) has gained prominence. HRQOL can be measured using standardized patient questionnaires called patient-reported outcome measures (PROMs). The Australian Cystic Fibrosis Data Registry (ACFDR) collects clinical data on adult and pediatric patients with CF. The incorporation of PROMs into the ACFDR would enable monitoring of HRQOL trends, benchmarking of HRQOL outcomes, and support of HRQOL research in CF. Objective Prior to incorporation of a PROM in the ACFDR, this systematic review was planned to evaluate whether any suitable PROMs are currently being used for CF. Methods This systematic review will be conducted in compliance with the PRISMA-P (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols) guidelines. MEDLINE, EMBASE, Scopus, CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Cochrane Library databases were searched for articles published between January 2009 and February 2019 on the use of PROMs to measure HRQOL in adult and pediatric patients with CF. Study designs such as observational studies, reviews and validation studies were included. Studies describing randomized controlled trials, dissertations, books, guideline statements, and abstracts were excluded. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) risk of bias checklist was used to assess the methodological quality of included studies. A descriptive synthesis of the results will be undertaken in line with the outcomes of this study. Results As of July 2019, the search has been conducted and 4530 records were screened. After two phases of screening, 97 studies were included in the final review and subjected to data extraction. Reviewers are currently in the process of critical appraisal. Conclusions This review will identify any PROM(s) that may be used to measure HRQOL in the ACFDR. Trial Registration PROSPERO International Prospective Register of Systematic Reviews CRD42019126931; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=126931

Background Composite measures combine data to provide a comprehensive view of patient outcomes. Despite composite measures being a valuable tool to assess post-intervention outcomes, the patient perspective is often missing. The purpose of this study was to develop a composite measure for an established cardiac outcome registry, by combining clinical outcomes following percutaneous coronary interventions (PCI) with a patient-reported outcome measure (PROM) developed specifically for this population (MC-PROM). Methods Two studies were undertaken. Study 1: Patients who had undergone a PCI at one of the three participating registry hospital sites completed the 5-item MC-PROM. Clinical outcome data for the patients (e.g. death, myocardial infarction, repeat vascularisation, new bleeding event) were collected 30 days post-intervention as part of routine data collection for the cardiac registry. Exploratory factor analysis of clinical outcomes and MC-PROM data was conducted to determine the minimum number of constructs to be included in a composite measure. Study 2: Clinical experts participated in a Delphi technique, consisting of three rounds of online surveys, to determine the clinical outcomes to be included and the weighting of the clinical outcomes and MC-PROM score for the composite measure. Results Study 1: Routine clinical outcomes and the MC-PROM data were collected from 266 patients 30 days post PCI. The MC-PROM score was not significantly correlated with any clinical outcomes. Study 2: There was a relatively consistent approach to the weighting of the clinical outcomes and MC-PROM items by the expert panel (n = 18) across the three surveys with the exception of the clinical outcome of ‘deceased at 30 days’. The final composite measure included five clinical outcomes within 30 days weighted at 90% (new heart failure, new myocardial infarction, new stent thrombosis, major bleeding event, new stroke, unplanned cardiac rehospitalisation) and the MC-PROM score (comprising 10% of the total weighting). Conclusions A single patient level composite score, which incorporates weighted clinical outcomes and a PROM was developed. This composite score provides a more comprehensive reported measure of individual patient wellbeing at 30 days post their PCI-procedure, and may assist clinicians to further assess and address patient level factors that potentially impact on clinical recovery.

Background Advance care planning (ACP) is a priority in Australian health policy, legislation and accreditation standards. ACP supports people to consider and communicate their future treatment preferences and document them in an advance care directive (ACD). However, the availability of ACDs at the point of care amongst Australians is unknown. The aim of this study was to describe the prevalence of ACDs in those aged ≥65 years accessing general practice (GP), hospitals and residential aged care facilities (RACF). Methods A prospective multi-centre health record audit. Literature review informed the methodology. Auditors received education and jurisdictional-specific audit manuals. Recruitment of organisations was via expression of interest. The primary outcome was presence of an ACD. Results Fifty-one sites participated (13 GPs, 12 hospitals, 26 RACFs), representing six jurisdictions. 2,285 health records were audited; 503 attending GPs, 574 in hospitals, and 1,208 in RACFs. 30% of people had at least one ACD. Most (21%) were non-statutory documents. The prevalence of statutory ACD-preferences for care was 3%; the prevalence of statutory ACD-substitute decision-maker was 11%. ACD prevalence in GP was low (3%) compared to hospitals (16%) and RACFs (48%). Conclusions Approximately 30% of older Australians had at least one ACD in their health record, and the majority of these were non-statutory ACDs. Priorities to increase accessibility of documentation may include improved policy, promotion of ACD uptake amongst older persons, storage within health record systems, workforce education and training, information resources, and ongoing prevalence monitoring. These initiatives are required across all sectors, especially GP.

Patient-reported outcome measures (PROM) are potentially useful outcome measures that may be reported at the individual clinical, health service and/or health system level. PROM require clearly defined patient populations to enable comparisons, and are most meaningful when integrated with clinical data sets. Where possible PROM should be measured pre- and post-intervention using reliable and validated tools. A variety of PROM collection methods exist which each have strengths and limitations, with selection depending on their purpose and patient factors. PROM programmes should be developed with high levels of clinician support and patient input to maximise collection of clinically relevant information.

Purpose The objective of this systematic review was to synthesize evidence on the effectiveness of workplace-based return-to-work (RTW) interventions and work disability management (DM) interventions that assist workers with musculoskeletal (MSK) and pain-related conditions and mental health (MH) conditions with RTW. Methods We followed a systematic review process developed by the Institute for Work & Health and an adapted best evidence synthesis that ranked evidence as strong, moderate, limited, or insufficient. Results Seven electronic databases were searched from January 1990 until April 2015, yielding 8898 non-duplicate references. Evidence from 36 medium and high quality studies were synthesized on 12 different intervention categories across three broad domains: health-focused, service coordination, and work modification interventions. There was strong evidence that duration away from work from both MSK or pain-related conditions and MH conditions were significantly reduced by multi-domain interventions encompassing at least two of the three domains. There was moderate evidence that these multi-domain interventions had a positive impact on cost outcomes. There was strong evidence that cognitive behavioural therapy interventions that do not also include workplace modifications or service coordination components are not effective in helping workers with MH conditions in RTW. Evidence for the effectiveness of other single-domain interventions was mixed, with some studies reporting positive effects and others reporting no effects on lost time and work functioning. Conclusions While there is substantial research literature focused on RTW, there are only a small number of quality workplace-based RTW intervention studies that involve workers with MSK or pain-related conditions and MH conditions. We recommend implementing multi-domain interventions (i.e. with healthcare provision, service coordination, and work accommodation components) to help reduce lost time for MSK or pain-related conditions and MH conditions. Practitioners should also consider implementing these programs to help improve work functioning and reduce costs associated with work disability. Electronic supplementary material The online version of this article (doi:10.1007/s10926-016-9690-x) contains supplementary material, which is available to authorized users.

Background and Objectives Patient-reported outcome measures (PROMs) captures the patient’s perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient’s perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. Research Design and Methods Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. Results Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. Discussion and Implications PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.

Advance care planning (ACP) documentation needs to be available at the point of care to guide and inform medical treatment decision-making.To examine concordance between self-reported completion of ACP documentation and self-reported storage of the documentation at the person's current point of care with the availability of the documentation in that person's health record.A national multicenter audit of health records and a self-report survey of eligible audit participants in 51 Australian health and residential aged care services. The audit assessed availability of ACP documentation in the health record, whereas the survey assessed self-reported completion and storage of the ACP documentation at the person's current place of care. To ascertain concordance, survey and audit data were cross-tabulated and concordance rates and kappa statistics were calculated overall and by health care sector and ACP documentation type.The audit included 2285 people, of whom 1082 were eligible for the survey. Of 507 who completed the survey (response rate = 47%), 272 (54%) reported completing ACP documentation, of whom 130 (48%) had documentation identified in the audit. Conversely, 39 of 235 people (17%) who reported not completing ACP documentation had documentation identified (concordance rate = 64%; κ = 0.303, P .001). The concordance rate increased to 79% when self-reported storage of ACP documentation at the person's current point of care was compared with the existence of the document in their health record (κ = 0.510, P .001). Concordance varied by health care setting and type of ACP documentation.Discrepancies exist between self-reported completion of ACP documentation and the presence of these documents in the health records of older adults, representing a significant patient safety issue. Public education campaigns and improvements to systems for document storage and accessibility are required to support person-centered medical and end-of-life care.

IntroductionUnderstanding the impact of comorbidity on health outcomes is important given that comorbidities can affect survival, morbidity, service delivery costs and healthcare utilisation. However, little is known about the types of comorbidities affecting specific health outcomes after minor to moderate road trauma.MethodsThis study involved 1574 participants who claimed injury compensation following transport-related injury. Cross sectional data were collected. Health outcomes were assessed using the EQ-5D-3L specific domains and summary score. Twelve self-reported pre-existing chronic conditions were assessed using a multivariate logistic regression, adjusting for demographic and injury characteristics.ResultsOut of 1574 participants, only 17 (1%) participants reported no pre-existing comorbidities, 72% reported one, 13% reported two and 14% reported three or more comorbidities. Hypertension (15%), depression (14%) and anxiety (14%) were the most commonly reported comorbidities, followed by arthritis (13%), chronic pain (11%) and asthma (11%). Participants with a history of arthritis (adjusted odds ratio [AOR] 1.90, 95% CI 1.24 to 2.91); chronic back pain (AOR 1.59, 95% CI, 1.04 to 2.43); other chronic pain (AOR 2.73, 95% CI 1.42 to 4.24); depression (AOR 2.55, 95% CI 1.60 to 4.05) and anxiety (AOR 2.08, 95% CI 1.32 to 3.26) were at increased risk of poorer health outcomes, after controlling for age, gender, type of injury and time since injury.ConclusionThis study found that comorbidities such as arthritis, chronic back pain, other chronic pain, depression and anxiety significantly increase the odds of poorer health postinjury, regardless of the time since injury. Regular screening of comorbid conditions may help identify people likely to have poorer outcomes, thereby enabling the implementation of interventions to optimise health despite the presence of comorbidities.

Objective The aim of the study was to understand the recovery phenomena and to explore participants' perspectives on the biopsychosocial facilitators and barriers affecting their recovery after a minor transport injury. Methods A qualitative method was used involving semi‐structured interviews with 23 participants who sustained a minor transport injury. Interviews and analysis were guided by the biopsychosocial model (BPS) of health. The outcomes were themes capturing biopsychosocial barriers to, and personal experiences of, recovery using a previously defined framework. Results The themes indicate that recovery is a multifaceted phenomenon affected by comorbidities such as chronic pain, depression and anxiety. A range of subsequent complexities such as the inability to self‐care and undertaking daily domestic duties, and incapacity to participate in recreational activities were major barriers to recovery. These barriers were found to be an on‐going source of frustration, dissatisfaction and a perceived cause of depressive symptomatology in many participants. Most participants reported mixed feelings of the care received. Other common issues raised included a lack of understanding of the assessment time, regular follow‐up, guidance and on‐going support. Conclusion This study revealed that recovery after a minor transport‐related injury was a challenging, complex, demanding and a long‐term process for the individuals in this study. Findings from this limited cohort suggested that, for participants to return to their pre‐accident health status, a more coordinated approach to information and care delivery may be required.

ObjectivesIt is important that the outcomes of advance care planning (ACP) conversations are documented and available at the point of care. Advance care directives (ACDs) are a subset of ACP documentation and refer to structured documents that are completed and signed by competent adults. Other ACP documentation includes informal documentation by the person or on behalf of the person by someone else (eg, clinician, family). The primary objectives were to describe the prevalence and correlates of ACDs among Australians aged 65 and over accessing health and residential aged care services. The secondary aim was to describe the prevalence of other ACP documentation.Design and settingA prospective multicentre health record audit in general practices (n=13), hospitals (n=12) and residential aged care facilities (RACFs; n=26).Participants503 people attending general practice, 574 people admitted to hospitals and 1208 people in RACFs.Primary and secondary outcome measuresPrevalence of one or more ACDs; prevalence of other ACP documentation.Results29.8% of people had at least one ACD on file. The majority were non-statutory documents (20.9%). ACD prevalence was significantly higher in RACFs (47.7%) than hospitals (15.7%) and general practices (3.2%) (pConclusionsIn this study, 30% of people had ACDs accessible and a further 20% had other ACP documentation, suggesting that approximately half of participants had some form of ACP. Correlates of ACD completion were greater impairment and being in an RACF or hospital. Greater efforts to promote and standardise ACDs across jurisdictions may help to assist older people to navigate and complete ACDs and to receive care consistent with their preferences.Trial registration numberACTRN12617000743369.

Objective: To investigate whether a range of previously identified biopsychosocial risk factors were associated with poorer health-related quality of life after transport-related injuries. Methods: This study involved 1,574 participants who sustained a transport-related injury, claimed compensation through the Victorian compensation scheme (in the Australian state of Victoria), and contributed to their cross-sectional outcome survey. Health-related quality of life was assessed using the EQ-5D-3L instrument. Results: Of the 1,574 participants (mean age 44.8 (standard deviation 16.6) years, 61% reported poor recovery expectations, 55% reported high pain intensity, 54% reported poor satisfaction with care provided, and 41% reported no improvement in their recovery. Poor quality of life was defined as EQ-5D-3L summary score 0–0.70. Predictors of self-reported poor health-related quality of life included older age (65+ years) patients (adjusted odds ratios (aOR) = 1.73, 95% confidence interval (95% CI) 1.04–2.87), higher pain intensity (aOR = 2.17, 95% CI 1.27–3.71), self-reported pre-injury chronic pain (aOR = 1.47, 95% CI 1.00–2.17), self-reported pre-injury mental health issues (aOR = 2.62, 95% CI 1.80–3.82), no improvement in recovery in the last 3 months (aOR = 1.54, 95% CI 1.15–2.06), longer hospital stay (>7 days) (aOR = 2.34, 95% CI 1.43–4.21) and no support from the family (aOR = 2.37, 95% CI 1.62–3.46). Conclusion: Biopsychosocial risk factors were associated with poorer health-related quality of life, regardless of the time since injury. Early assessment of these risk factors and tailored interventions will go some way towards improving outcomes among compensable patients with minor to moderate transport-related injuries. Key words: recovery; health outcomes; road trauma; non-catastrophic injuries; compensation.

Objectives: As the novel coronavirus (SARS-CoV-2) pandemic continues, people with cystic fibrosis (CF) have been identified as being a vulnerable group. It is essential that people with CF, their families and their clinical teams have the most up-to-date information on the impact of SARS-CoV-2 on their health. This study aims to characterise the impact of SARS-CoV-2 infection in people with CF throughout 2020, identify factors that predict clinical progression of COVID-19, and to describe medium-term follow-up of people who have been infected. Methods: The ‘Cystic Fibrosis Registry Global Harmonization Group’ is a worldwide network of CF Registries that each contributed data on people with CF diagnosed with SARS-CoV-2 infection. In this analysis, we will report on cases contributed from 22 countries diagnosed between 1st February and 13th December 2020. We will present demographic, pre-infection clinical characteristics, symptoms, infection management and outcomes. We will use multivariable logistic regression to assess predictors for hospitalisation with respiratory support and intensive care admission as the outcomes of interest representing clinical progression of COVID-19. Descriptive analysis of medium-term follow-up BMI and FEV1% predicted values will also be undertaken. Results: Results pending. Expected cohort size >1,000, including the 181 previously reported in our paper “The global impact of SARS-CoV-2 in 181 people with cystic fibrosis.” Conclusion: It is expected that the findings of this study will have important implications for shielding advice, clinical care and vaccine prioritisation for people with CF.

Our purpose was to: (1) assess the level of consistency between the quality-of-life (QOL) scores of men with prostate cancer for urinary/bowel/sexual bother, collected via telephone versus self-administered survey; (2) determine factors associated with variation in level of agreement; and (3) assess the efficacy of telephone interview as a mode of administration against the "gold standard" tool, EPIC-26.Cohen's Kappa coefficients were calculated to investigate test-retest reliability across modes of administration. Logistic regression models explored patients' characteristics associated with the magnitude of urinary/bowel/sexual problem. Sensitivities and specificities of the telephone mode in reference to "gold standard" were further measured.From 221 men who agreed to participate in the study, 168 (76.0%) returned completed surveys. Kappa-linear model resulted in a moderate agreement across the urinary/bowel/sexual bother scores for both modes of administration; with greatest concordance recorded for bowel bother (90%). Patient's age (

Context Personal and interpersonal factors may be influential in a person's decision to engage in advance care planning (ACP), including completion of ACP documentation. Objectives To conduct a cross-sectional survey of older adults accessing Australian general practices, hospitals, and residential aged care facilities, with the aim of describing associations between personal and interpersonal factors and self-reported ACP documentation completion. Methods Eligible participants included in a national health record audit were approached to complete a survey measuring demographic and health characteristics, preferences for care, worries about the future, and experiences talking with others about ACP and completing ACP documentation. Results Of 1082 people eligible to participate in the survey, 507 completed the survey (response rate = 47%; median age 82 years) and 54% (n = 272) reported having completed ACP documentation. Having ever discussed ACP with other people (anyone) or a doctor were both significant predictors of ACP documentation completion, whereas having previously spoken specifically to a partner about ACP, currently living with children compared to living alone, and being aged 55–69 versus 90–99 years were associated with reduced odds of ACP documentation completion. Conclusion Approximately half the participants reported having completed ACP documentation. The strongest predictor of ACP documentation completion was having spoken to anyone about ACP followed by having spoken to a doctor about ACP. These findings suggest that discussions about ACP are an important part of the process of completing ACP documentation.

The purpose of the study was to compare completeness, timeliness and cost of patient-reported outcome measures (PROMs) collection using telephone, email and post in men with prostate cancer. A parallel, three-arm randomised controlled equivalence trial. 1168 patients were randomised to telephone (n = 295), postal (n = 388) and email (n = 385) arms. Participants were asked to provide self-reported responses for 26 items of Expanded Prostate Cancer Index Composite. Cost and resource data were collected from a provider perspective. Equivalence tests showed no difference in completeness in the three arms within a 10% equivalence margin. Men diagnosed in public hospitals were less likely to complete the survey compared to those in private hospitals, OR = 0.19 (95% CI 0.04–0.89) (p = 0.035). The email survey required significantly less time to complete than telephone and postal methods [median time of 2 min (IQR 1,8) vs. 7 min (IQR 6,9) vs. 10 min (IQR 9,12), respectively (p

Background 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. Methods and findings Studies were selected through searches of PubMed, Medline, Embase, and Cochrane library. 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. Conclusion 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.

Previous research in Victoria, Australia, found differences in prostate cancer outcomes in regional and metropolitan areas. This investigation of undiagnosed men in regional areas and a metropolitan area of South Australia sought their perspectives on prostate cancer. Our aim was to learn whether men who had not been diagnosed could shed light on why men outside metropolitan areas tended to have poorer outcomes than metropolitan men. Our goal was to build on evidence contributing to improving outcomes in prostate cancer care. Semi-structured interviews were designed to elicit explanation and meaning. 15 men (10 metropolitan, 5 regional) not diagnosed with prostate cancer were recruited through widely-distributed flyers in medical and community settings. Interviews were recorded and transcribed; transcripts were analysed thematically. Five main themes were identified, four of which were prompted by the questions: Addressing prostate health, Experiences with and expectations of GPs, Differences in care between regional and metropolitan areas, and Achieving early diagnosis. The fifth theme arose spontaneously: Australian masculinity. Men identified as problematic the limited availability of GPs in regional areas, the lack of consistency in approaches to prostate cancer detection, and men’s reluctance to seek medical care. Community-level strategies appear to be valued to encourage men to address prostate health. Maintaining and extending a systemic approach to prostate care may improve outcomes for men in Australia.

Introduction The burden of managing musculoskeletal pain and injuries (MSDs) and mental health (MH) conditions in the workplace is substantial. While overall rates of work injury have declined in most high-income countries, there have not been equivalent improvements in RTW rates. The primary objective of this review was to synthesise evidence on the effectiveness of workplace- and system-based interventions for RTW and recovery after a period of work absence. Methods We followed a systematic review process developed by the Institute for Work and Health and an adapted best evidence synthesis. Result Seven electronic databases were searched from January 1990 until April 2015. This comprehensive search yielded 8898 non-duplicate references. Our synthesis identified 69 studies examining three types of RTW outcomes (lost time, work functioning and associated costs) and four recovery outcomes (pain, psychological functioning, physical functioning and quality-of-life). These studies examined interventions that were classified into three broad domains: healthcare provision, service delivery and workplace modifications. Our review identified that in most cases, interventions were multi-faceted and included multiple intervention components, sometimes operating across multiple domains. The most common RTW outcome reported was lost time. Among the other RTW and recovery outcomes, studies varied widely in their inclusion. There is strong evidence that interventions encompassing multiple domains are effective in improving RTW outcomes in workers with MSD or MH conditions. In contrast, there is moderate to strong evidence that most single-component interventions have no effect on improving recovery regardless of condition. Discussion While there is substantial research literature focused on RTW, only a small percentage of these intervention studies also include measures of recovery. Identifying effective intervention programs that facilitate RTW and recovery allows workplaces to implement empirically supported programs that benefit workers through improved function and reduced pain while reducing the economic burden associated with lost time.

Purpose To determine whether healthcare use and return-to-work (RTW) outcomes differ with GPs’ injured-worker caseload. Methods Retrospective analyses of the Compensation Research Database, which captures approximately 85% of all injured worker claims in Victoria, Australia was conducted. Four injured-worker caseload groups were examined that represented the 25th, 50th, 75th, and 100th percentiles of claimants seen per GP over the 8-year study period (2003–2010): (i) 1–13 claimants; (ii) 14–26 claimants; (iii) 27–48 claimants; and (iv) 49+ claimants (total claims, n = 124,342; total GPs, n = 9748).The characteristics of claimants in each caseload group, as well as the influence of caseload on three outcomes relevant to RTW (weekly compensation paid, work incapacity days, medical-and-like costs), were examined. Results Distinct profiles for high versus low caseload groups emerged. High caseload GPs treated significantly more men in blue collar occupations and issued significantly more ‘alternate duties’ certificates. Conversely, low caseload GPs treated significantly more women in white collar occupations, predominantly for mental health injuries, and issued significantly more ‘unfit-for-work’ certificates. Few significant differences were found between the two intermediate GP caseload groups. High caseload was associated with significantly greater medical-and-like costs, however, no caseload group differences were detected for weekly compensation paid or duration of time-off-work. Conclusions Training GPs who have a low injured-worker caseload in workers’ compensation processes, utilising high caseload GPs in initiatives involving peer-to-peer support, or system changes where employers are encouraged to provide preventive or rehabilitative support in the workplace may improve RTW outcomes for injured workers.

Objectives To determine the association between the implementation of the 2006 Australasian Clinical Practice Guidelines for Nutrition in Cystic Fibrosis (CF) and the nutritional status of children participating in the Australian Cystic Fibrosis Data Registry (ACFDR). Methods This research consisted of a quantitative study using ACFDR data and a survey of clinicians and dietitians treating children with CF. Two independent cohorts of children (2–5 years and 6–11 years) were selected from ACFDR between 1998 and 2014 (N = 2304). Generalised estimating equation model was used to assess weight, height and body mass index (BMI) z-scores for each patient before and after the implementation of the nutrition guidelines. A nationwide online survey was sent to 48 clinicians to explore the enablers and barriers to implementation of the guidelines. Results Data analysis showed significant increase (p

Background 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. Methods and findings 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. Conclusions 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 trial registration number Systematic review protocol was registered in International Prospective Register for Systematic Reviews (PROSPERO) on 14 December 2016. Registration number CRD42016052276.

Workers’ compensation authorities expect that various stakeholders — insurers, employers, injured workers and healthcare providers — work together to help return an injured worker to early, safe and sustainable employment. To date, research examining interactions between employers and healthcare providers, in the context of return to work, is limited. Based on data gathered via qualitative, in-depth interviews with employers, our paper addresses this gap. We examine the perspectives of a group of employers from Melbourne, Australia who have had experience with return to work and, specifically, their interactions with general practitioners during this process. Our findings indicate that while employers view general practitioners as important decision-makers in the return-to-work process, they often have difficulty making contact with general practitioners and working collaboratively on a return-to-work plan. They feel that general practitioners’ lack of engagement in the return-to-work process is d...

IntroductionGlobally, road transport accidents contribute substantially to the number of deaths and also to the burden of disability. Up to 50 million people suffer a transport-related non-fatal injury each year, which often leads to long-term disability. It has been shown that substantial number of people with minor injuries struggle to recover and the reasons are still not well explored.Despite the high prevalence, little is known about the factors hindering recovery following minor traffic-related injuries. The aim of this paper is to present a protocol for the systematic review aiming to understand biopsychosocial factors related to non-recovery and identify current gaps in the literature.Methods and analysisThe review will be conducted in compliance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocol guidelines. A search of the electronic databases, MEDLINE, EMBASE, Cochrane Central Register of Controlled trials, will be undertaken, in addition to Google Scholar and grey literature to identify studies in period from 2006 to 2016. Quantitative and qualitative research articles describing and identifying biopsychosocial factors associated with non-recovery and health outcomes such as pain, disability, functional recovery, health-related quality of life, post-traumatic stress disorder, depression, anxiety and return to work will be included. A conceptual framework developed to identify biopsychosocial factors will be applied to assure defined criterion.At present, there is little anticipation for meta-analyses due to the heterogeneity of factors and outcomes assessed. Therefore, a narrative synthesis based on study findings will be conducted.Ethics and disseminationEthical approval is not required as primary data will not be collected. Review results will be published as a part of thesis, peer-reviewed journal and conferences.Trialregistration numberPROSPEROregistration number: CRD42016052276.

Background The Victorian Prostate Cancer Registry (Australia) revealed poorer rates of survival for men diagnosed with prostate cancer in one Victorian regional area than for men in metropolitan Melbourne. We sought to explore the perceptions and experiences of prostate cancer diagnosis, treatment, and care of men diagnosed with prostate cancer who lived in regional or metropolitan areas and of men who had not been so diagnosed. Our goal was to contribute to the evidence from which can be built continuing improvements in prostate health care. Methods Using the qualitative method of in-depth interviews to gain access to explanation and meaning, we interviewed 21 men: 10 recruited through the Prostate Cancer Outcome Registry-Victoria and 11 from the community. Transcripts were analysed thematically. Results We identified four main themes within which men discussed prostate cancer: Case-finding, Diagnosis, Treatment and Care, and Spreading the Word. Contrasts revealed between regional and metropolitan areas related mostly to the more limited supportive care in regional areas. Conclusions It is evident from the perspectives of these men that every aspect of prostate cancer care would benefit from attention: publicising the need to check prostate health, treatment, and supporting men in the years after treatment. Continuing to work on systemic improvements is an important goal for all those committed to men’s health. Electronic supplementary material The online version of this article (10.1186/s12885-017-3699-1) contains supplementary material, which is available to authorized users.

Objectives To investigate the attributes of Australian clinical quality registries (CQR). Design and setting Survey of 40 CQRs between September 2015 and April 2016. Participants CQR lead investigators/project managers. Intervention None. Main outcome measures Registry organization, geographical coverage, data quality, management, characteristics, output and outcomes. Results Of those who responded (34/40; 85.0%), 12 (34.3%) were binational (Australia and New Zealand); 22 (64.7%) were Australian-only registries; and 13 (38.2%) had national coverage. CQRs covered critical care, infection control, cardiovascular diseases, cancer, chronic diseases, procedures and devices, and transplants. Overall, 24/34 CQRs (70.6%) were public sector funded. In total, 14 (41.2%) scored >75% on a composite score developed to assess data quality. Overall, 29/34 (85.3%) produced an annual multi-centred report; only 15/34 (44.1%) produced provider-specific reports. Mortality/survival and quality of life were collected by 82.4 and 32.4% of CQRs, respectively. Most CQRs displayed data in bar/column charts (28/34, 82.4%) and funnel plots (17/34, 50%). Most CQRs adopted an opt-out consent process (n = 17/31; 54.8%). Linear regression indicated that longer duration of CQR was associated with higher data quality (>20 vs 0-5 years coefficient = 4.76, 95% CI: 0.26, 9.26). Opt-in consent was associated with lower data quality (no active consent vs opt-in approval method, coefficient = -5.22, 95% CI: -8.71, -1.72). Six CQRs self-reported having undertaken an economic evaluation of their registry. Conclusion CQRs varied in geographical coverage; stage of development, approach to recruitment; method and frequency of reporting their output; and data quality assurance. An accreditation system for CQRs would likely assist in recognizing high-quality registries.

Background Return to work (RTW) is important for recovery post-injury. Fear of (re)injury is a strong predictor of delayed RTW, and therefore much attention has been given to addressing injured workers’ fear beliefs. However, RTW is a socially-negotiated process and it may be important to consider the wider social context of the injured worker, including the beliefs of the key people involved in their RTW journey. Methods This paper involves data collected as part of a wider study in which semi-structured interviews explored RTW from the perspectives of 93 key stakeholders: injured workers, GPs, employers and insurance case managers in Victoria, Australia. Inductive analysis of interview transcripts identified fear of (re)injury as a salient theme across all stakeholder groups. This presented an opportunity to analyse how the wider social context of the injured worker may influence fear and avoidance behaviour. Two co-authors performed inductive analysis of the theme ‘fear of (re)injury’. Codes identified in the data were grouped into five categories. Between and within category analysis revealed three themes describing the contextual factors that may influence fear avoidance and RTW behaviour. Results Theme one described how injured workers engaged in a process of weighing up the risk of (re)injury in the workplace against the perceived benefits of RTW. Theme two described how workplace factors could influence an injured workers’ perception of the risk of (re)injury in the workplace, including confidence that the source of the injury had been addressed, the availability and suitability of alternative duties. Theme three described other stakeholders’ reluctance to accept injured workers back at work because of the fear that they might reinjure themselves. Conclusions Our findings illustrate the need for a contextualised perspective of fear avoidance and RTW behaviour that includes the beliefs of other important people surrounding the injured worker (e.g. employers, family members, GPs). Existing models of health behaviour such as The Health Beliefs Model may provide useful frameworks for interventions targeting the affective, cognitive, social, organisational and policy factors that can influence fear avoidance or facilitate RTW following injury.

Background 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. Objectives 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. Methods 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. Results 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. Conclusions 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. Trial registration PROSPERO CRD42015017319.