Hospitalizations Among Adults With CKD in Public Renal Specialty Practices: A Retrospective Study From Queensland, Australia.

Rationale & Objective: Little is known about hospital admissions in nondialysis patients with chronic kidney disease (CKD) before death or starting kidney replacement therapy (KRT). Study Design: Retrospective observational cohort study. Setting & Participants: Hospitalizations among 7,201 patients with CKD from 10 public renal clinics in Queensland (QLD), enrolled in the CKD.QLD registry starting in May 2011, were followed for 25,496.34 person-years until they started receiving KRT or died, or until June 30, 2018. Predictors: Demographic and clinical characteristics of patients with CKD. Outcomes: Hospital admissions. Analytical Approach: We evaluated the association of demographic and clinical features with hospitalizations, length of hospital stay, and cost. Results: Approximately 81.5% of the patients were admitted at least once, with 42,283 admissions, costing Australian dollars (AUD) 231 million. The average number of admissions per person-year was 1.7, and the cost was AUD 9,060, 10 times and 2 times their Australian averages, respectively. Single (1-day) admissions constituted 59.2% of all the hospital episodes, led by neoplasms (largely chemotherapy), anemia, CKD-related conditions and eye conditions (largely cataract extractions), but only 14.8% of the total costs. Approximately 41% of admissions were >1-day admissions, constituting 85.2% of the total costs, with cardiovascular conditions, respiratory conditions, CKD-related conditions, and injuries, fractures, or poisoning being the dominant causes. Readmission within 30 days of discharge constituted >42% of the admissions and 46.8% costs. Admissions not directly related to CKD constituted 90% of the admissions and costs. More than 40% of the admissions and costs were through the emergency department. Approximately 19% of the hospitalized patients and 27% of the admissions did not have kidney disease mentioned as either principal or associate causes. Limitations: Variable follow-up times because of different dates of consent. Conclusions: The hospital burden of patients with CKD is mainly driven by complex multiday admissions and readmissions involving comorbid conditions, which may not be directly related to their CKD. Strategies to prevent these complex admissions and readmissions should minimize hospital costs and outcomes. Plain-Language Summary: We analyzed primary causes, types, and costs of hospitalizations among 7,201 patients with chronic kidney disease (CKD) from renal speciality clinics across Queensland, Australia, over an average follow-up of 3.54 years. The average annual cost per person was $9,060, and was the highest in those with more advanced CKD, higher age, and with diabetes. More than 85% of costs were driven by more complex hospitalizations with longer length of stay. Cardiovascular disease was the single largest contributor for hospitalizations, length of hospital stay, and total costs. Readmission within 30 days of discharge, particularly for the same disorder, and multiday admissions should be the main targets for mitigation of hospital costs in this population.

Nanofibrillated cellulose originated from Rhododendron ponticum to produce scaffolds using 3D printing for biomedical applications.

Rhododendron ponticum is an invasive species that spreads rapidly and is described as one of the biggest threats to peatlands in Ireland. This study offers an innovative approach to utilizing Rhododendron waste. Initially, sawdust was submitted to a bleaching treatment and the nanofibrillated cellulose (NFC) was obtained using two different methods: ultra-fine friction grinding and twin-screw extrusion with the assistance of TEMPO (2,2,6,6-tetramethyl-1-piperidinyloxy) pre-treatment. The samples processed through twin-screw extrusion exhibited the presence of NFC at five intervals, as confirmed by TEM analysis. However, these samples displayed a higher diameter deviation compared to those processed through grinding alone. Notably, after 20 extrusion steps, the NFC diameter became more uniform, reaching approximately 35 nm. Sedimentation tests showed that extrusion produced more homogeneous cellulose size than the grinder method. However, FTIR characterization for the samples showed a unique band related to C-O-C glycosidic linkage. The results showed that grinding breaks these groups resulting in crystallinity values lower than extrusion, 50 % compared 60 %. Therefore, NFC with 20 steps by grinding was blended with polycaprolactone to produce a 3D scaffold using a 3D printer at different ratios of 1-5 % addition. The effect of 1 % of NFC was unique showing significant enhanced mechanical properties compared to pure polycaprolactone (PCL), additionally, the NFC does not exhibit toxicity so these materials show promise for biomedical applications.

A qualitative study exploring the experiences and needs of people living with young onset dementia related to driving cessation: 'It's like you get your legs cut off'.

BACKGROUND: driving disruptions have significant impact on individuals living with dementia, their care partners and family members. Previous studies show that for older people with dementia, stopping driving is one of the hardest things that they cope with. To date, no studies exist that address the expressed needs and experiences of people living with young onset dementia (YOD) who are adjusting to life without driving, whose needs are not well understood and whose needs might be expected to differ from those of older people with dementia. METHODS: a multi-perspective, qualitative descriptive phenomenological approach was undertaken. A topic guide was developed in consultation with lived experience experts. In-depth interviews (n = 18) with 10 people with YOD and eight family caregivers were conducted, to elicit lived experiences in relation to changing and cessation of driving. Interviews were recorded and transcribed verbatim. Data were analysed using a hybrid approach, employing deductive and inductive coding. RESULTS: core findings reflected the impact and coping strategies employed by people with YOD and their care partners across four themes: (i) losses and burdens, (ii) the unique challenges of YOD, (iii) coping and adjustment and (iv) how to meet needs. CONCLUSIONS: driving disruptions often come at a time when people living with YOD are likely to have significant financial and family commitments, or they/their partners may be employed or raising a family, negatively impacting individual's roles and self-identities. Intervention to support emotional and practical adjustment and reduce social isolation is essential for coping.

Implementation of a risk-stratified, guideline-based clinical pathway of care to improve health outcomes following whiplash injury (Whiplash ImPaCT): a multicentre, randomized, controlled trial.

ABSTRACT: Current pathways of care for whiplash follow a "stepped care model," result in modest treatment outcomes and fail to offer efficient management solutions. This study aimed to evaluate the effectiveness of a risk-stratified clinical pathway of care (CPC) compared with usual care (UC) in people with acute whiplash. We conducted a multicentre, 2-arm, parallel, randomised, controlled trial in primary care in Australia. Participants with acute whiplash (n = 216) were stratified for risk of a poor outcome (low vs medium/high risk) and randomised using concealed allocation to either the CPC or UC. In the CPC group, low-risk participants received guideline-based advice and exercise supported by an online resource, and medium-risk/high-risk participants were referred to a whiplash specialist who assessed modifiable risk factors and then determined further care. The UC group received care from their primary healthcare provider who had no knowledge of risk status. Primary outcomes were neck disability index (NDI) and Global Rating of Change (GRC) at 3 months. Analysis blinded to group used intention-to-treat and linear mixed models. There was no difference between the groups for the NDI (mean difference [MD] [95% confidence interval (CI)] -2.34 [-7.44 to 2.76]) or GRC (MD 95% CI 0.08 [-0.55 to 0.70]) at 3 months. Baseline risk category did not modify the effect of treatment. No adverse events were reported. Risk-stratified care for acute whiplash did not improve patient outcomes, and implementation of this CPC in its current form is not recommended.

The cost-effectiveness of coronary calcium score-guided statin therapy initiation for Australians with family histories of premature coronary artery disease.

OBJECTIVES: To compare the cost-effectiveness of coronary artery calcium (CAC) score-guided statin therapy criteria and American College of Cardiology/American Heart Association (ACC/AHA) guidelines (10-year pooled cohort equation [PCE] risk ≥ 7.5%) with selection according to Australian guidelines (5-year absolute cardiovascular disease risk [ACVDR] ≥ 10%), for people with family histories of premature coronary artery disease. STUDY DESIGN, SETTING: Markov microsimulation state transition model based on data from the Coronary Artery calcium score: Use to Guide management of Hereditary Coronary Artery Disease (CAUGHT-CAD) trial and transition probabilities derived from published statin prescribing and adherence outcomes and clinical data. PARTICIPANTS: 1083 people with family histories of premature coronary artery disease but no symptomatic cardiovascular disease. MAIN OUTCOME MEASURES: Relative cost-effectiveness over fifteen years, from the perspective of the Australian health care system, compared with usual care (Australian guidelines), assessed as incremental cost-effectiveness ratios (ICERs), with a notional willingness-to-pay threshold of $50 000 per quality-adjusted life-year (QALY) gained. RESULTS: Applying the Australian guidelines, 77 people were eligible for statin therapy (7.1%); with ACVDR 5-year risk ≥ 2% and CAC score > 0, 496 people (46%); with ACVDR 5-year risk ≥ 2% and CAC score ≥ 100, 155 people (14%); and with the ACC/AHA guidelines, 256 people (24%). The ICERs for CAC-guided selection were $33 108 (CAC ≥ 100) and $53 028 per QALY gained (CAC > 0); the ACC/AHA guidelines approach (ICER, $909 241 per QALY gained) was not cost-effective. CAC score-guided selection (CAC ≥ 100) was cost-effective for people with 5-year ACVDR of at least 5%. CONCLUSION: Expanding the number of people at low to intermediate CVD risk eligible for statin therapy should selectively target people with subclinical atherosclerosis identified by CAC screening. This approach can be more cost-effective than simply lowering treatment eligibility thresholds.

Green Copolymers and Nanocomposites from Myrcene and Limonene Using Algerian Nano-Clay as Nano-Reinforcing Filler.

In this work, we report a new facile method for the preparation of myrcene-limonene copolymers and nanocomposites using a Lewis acid as a catalyst (AlCl3) and organo-modified clay as a nano-reinforcing filler. The copolymer (myr-co-lim) was prepared by cationic copolymerization using AlCl3 as a catalyst. The structure of the obtained copolymer is studied and confirmed by Fourier Transform Infrared spectroscopy, Nuclear Magnetic Resonance spectroscopy, and Differential Scanning Calorimetry. By improving the dispersion of the matrix polymer in sheets of the organoclay, Maghnite-CTA+ (Mag-CTA+), an Algerian natural organophilic clay, was used to preparenanocomposites of linear copolymer (myr-co-lim). In order to identify and assess their structural, morphological, and thermal properties, the effect of the organoclay, used in varyingamounts (1, 4, 7, and 10% by weight), and the preparation process were investigated. The Mag-CTA+ is an organophylic montmorillonite silicate clay prepared through a direct exchange process in which they were used as green nano-reinforcing filler. The X-ray diffraction of the resulting nanocomposites revealed a considerable alteration in the interlayer spacing of Mag-CTA+. As a result, interlayer expansion and myr-co-lim exfoliation between layers of Mag-CTA+ were observed. Thermogravimetric analysis provided information on the synthesized nanocomposites' thermal properties. Fourier transform infrared spectroscopy and scanning electronic microscopy, respectively, were used to determine the structure and morphology of the produced nanocomposites (myr-co-lim/Mag). The intercalation of myr-co-lim in the Mag-CTA+ sheets has been supported by the results, and the optimum amount of organoclay needed to create a nanocomposite with high thermal stability is 10% by weight. Finally, a new method for the preparation of copolymer and nanocomposites from myrcene and limonene in a short reaction time was developed.

Evaluating the Injection Moulding of Plastic Parts Using In Situ Time-Resolved Small-Angle X-ray Scattering Techniques.

In this study, we describe the design and fabrication of an industrial injection moulding system that can be mounted and used on the NCD-SWEET small-angle X-ray scattering beamline at ALBA. We show how highly useful time-resolved data can be obtained using this system. We are able to evaluate the fraction of the material in the mould cavity and identify the first material to solidify and how this varies with the injection temperature. The design follows current industrial practice and provides opportunities to collect time-resolved data at several points within the mould cavity so that we can build up a 4D perspective of the morphology and its temporal development. The quantitative data obtained will prove invaluable for the optimisation of the next generation of injection moulding techniques. This preliminary work used results from the injection moulding of a general-purpose isotactic polypropylene.

An insight into the mechanisms underpinning the anti-browning effect of Codium tomentosum on fresh-cut apples.

This work focuses on understanding the action of a novel seaweed extract with anti-browning functionality in fresh-cut apples. Organic fresh-cut apples were coated by immersion in an aqueous Codium tomentosum seaweed extract (0.5 % w/v), packaged under ambient atmospheric conditions in plastic bags, and stored at 4 ˚C for 15 days. Browning-related enzymatic activities, as well as targeted gene expression related to superficial browning, were monitored immediately after coating and followed at five-day intervals, until a final storage period of 15 days. Gene expression was particularly affected one hour after coating application (day 0), with no expression registered for peroxidase (mdPOD) and phenylalanine ammonia-lyase (mdPAL) genes in the coated samples. A reduction in polyphenol oxidase expression levels was also observed. After 15 days of storage, the coated samples developed lower browning levels and presented distinctly lower activities of polyphenol oxidase and peroxidase - the oxidative enzymes predominantly involved in enzymatic browning. The observed post-coating suppression of mdPAL and mdPOD expression, and reduction in mdPPO expression, suggest that the seaweed C. tomentosum extract delays the activation of these genes, and decreases enzymatic activity, which in turn accounts for the coating's anti-browning effect.

Assisted Deaths Prior to the Voluntary Assisted Dying Act 2017 (Vic): Would Patients Have Met the Eligibility Criteria to Request Voluntary Assisted Dying?

Unlawful assisted dying practices have been reported in Australia for decades. Voluntary assisted dying (VAD) is now lawful in Victoria and Western Australia in limited circumstances and will soon be lawful in a further four Australian States. This article examines nine cases involving unlawful assisted dying practices in Victoria in the 12 months prior to the commencement of the Voluntary Assisted Dying Act 2017 (Vic) in 2019. It explores whether, if that Act had been in operation at the relevant time, these patients would have been eligible to request VAD, having regard to their decision-making capacity and their disease, illness or medical condition. Many of these patients would not have been eligible to request VAD had the legislation been operational, primarily because they lacked decision-making capacity. As VAD is lawful only in a narrow set of circumstances, unlawful assisted deaths may continue to occur in those States where voluntary assisted dying is legal.

Chronic kidney disease in public renal practices in Queensland, Australia, 2011-2018.

AIM: To describe adults with (non-dialysis) chronic kidney disease (CKD) in nine public renal practice sites in the Australian state of Queensland. METHODS: 7,060 persons were recruited to a CKD Registry in May 2011 and until start of kidney replacement therapy (KRT), death without KRT or June 2018, for a median period of 3.4 years. RESULTS: The cohort comprised 7,060 persons, 52% males, with a median age of 68 yr; 85% had CKD stages 3A to 5, 45.4% were diabetic, 24.6% had diabetic nephropathy, and 51.7% were obese. Younger persons mostly had glomerulonephritis or genetic renal disease, while older persons mostly had diabetic nephropathy, renovascular disease and multiple diagnoses. Proportions of specific renal diagnoses varied >2-fold across sites. Over the first year, eGFR fell in 24% but was stable or improved in 76%. Over follow up, 10% started KRT, at a median age of 62 yr, most with CKD stages 4 and 5 at consent, while 18.8% died without KRT, at a median age of 80 yr. Indigenous people were younger at consent and more often had diabetes and diabetic kidney disease and had higher incidence rates of KRT. CONCLUSION: The spectrum of characteristics in CKD patients in renal practices is much broader than represented by the minority who ultimately start KRT. Variation in CKD by causes, age, site and Indigenous status, the prevalence of obesity, relative stability of kidney function in many persons over the short term, and differences between those who KRT and die without KRT are all important to explore.

Delivery and outcomes of end-of-life care in the Australian context: Experiences and reflections of general practitioners.

Previous research on general practitioners' (GPs') involvement in end-of-life care has largely focused on a specific aspect of care or has provided broad overviews that failed to capture individual variations in patient management. This qualitative study aimed to explore Australian GPs' feedback and reflections on the individual-level care provided for patients in their last year of life. The findings of the study were drawn from a nation-wide survey of GPs' experiences in end-of-life care. We analysed responses from 63 GPs for 267 of the 272 reported deaths. Factors influencing delivery of optimal end-of-life care reported by GPs were categorised into four groups: patient-related factors, carer-related factors, interactions between GPs and patients/carer-related factors and broader health system issues. Each group included both barriers and facilitators. Our study highlighted importance of the emotional dimensions of therapeutic relationships with patients and their family, availability and capacity of family support and smooth communication and continuity of care between GPs and hospitals in delivery of optimal end-of-life care. Lack of these facilitators, misconceptions of palliative care and conflicts on implementing care plans among patients and their family tended to impede delivery of such care. On the basis of our findings in the present study and previous literature, we conclude that improved end-of-life care in general practice requires comprehensive approaches to supporting both the GP and family to provide care in patients' preferred place, such as enhanced palliative care training and improved availability of external support for GPs, higher levels of hospital-based services reaching into community settings and broader community-based resources for families beyond simply the healthcare system.

Changing the Paradigm-Controlling Polymer Morphology during 3D Printing Defines Properties.

Direct digital manufacturing consists of a set of techniques that enable products to be fabricated directly from their digital definition, without the use of complex tooling or moulds. This manufacturing approach streamlines prototyping and small-scale production, as well as the mass customization of parts with complex designs immediately fixed before fabrication. With broad applicability, there are clearly opportunities in the field of medical devices for its use. However, many of the developments of direct digital manufacturing focus on simply specifying the shape or the form of the product, and this limited scope throws away many of the particular advantages of direct digital manufacturing. This work is focused on remedying this situation so that the digital specification of the fabricated product includes the properties as well as the form of the product. We use in situ time-resolving small-angle X-ray scattering measurements performed at the ALBA Synchrotron Light Source in Barcelona to evaluate the control that can be exerted on the morphology of a semi-crystalline polymer during extruder-based 3D printing. We use this as a methodology for printing the patterns of the morphology of the polymer to realise the patterns of properties of the polymeric material, specifically the modulus of the polymer. We give an example of products produced in this manner that contain spatial variation in their properties.

Additive Manufactured Poly(ε-caprolactone)-graphene Scaffolds: Lamellar Crystal Orientation, Mechanical Properties and Biological Performance.

Understanding the mechano-biological coupling mechanisms of biomaterials for tissue engineering is of major importance to assure proper scaffold performance in situ. Therefore, it is of paramount importance to establish correlations between biomaterials, their processing conditions, and their mechanical behaviour, as well as their biological performance. With this work, it was possible to infer a correlation between the addition of graphene nanoparticles (GPN) in a concentration of 0.25, 0.5, and 0.75% (w/w) (GPN0.25, GPN0.5, and GPN0.75, respectively) in three-dimensional poly(ε-caprolactone) (PCL)-based scaffolds, the extrusion-based processing parameters, and the lamellar crystal orientation through small-angle X-ray scattering experiments of extruded samples of PCL and PCL/GPN. Results revealed a significant impact on the scaffold's mechanical properties to a maximum of 0.5% of GPN content, with a significant improvement in the compressive modulus of 59 MPa to 93 MPa. In vitro cell culture experiments showed the scaffold's ability to support the adhesion and proliferation of L929 fibroblasts (fold increase of 28, 22, 23, and 13 at day 13 (in relation to day 1) for PCL, GPN0.25, GPN0.5, and GPN0.75, respectively) and bone marrow mesenchymal stem/stromal cells (seven-fold increase for all sample groups at day 21 in relation to day 1). Moreover, the cells maintained high viability, regular morphology, and migration capacity in all the different experimental groups, assuring the potential of PCL/GPN scaffolds for tissue engineering (TE) applications.

Barriers and facilitators to nurse-led advance care planning and palliative care practice change in primary healthcare: a qualitative study.

Primary care settings are ideal for initiating advance care planning (ACP) conversations and assessing palliative and supportive care needs. However, time constraints and a lack of confidence to sensitively and efficiently initiate such discussions are noted barriers. The Advance Project implemented a national multicomponent training package to support Australian general practice nurses (GPNs) to work with GPs to initiate ACP and palliative care conversations in their practice. This paper reports on semistructured interviews conducted with 20 GPNs to explore barriers and facilitators to implementing the Advance Project model. Participants identified a range of factors that affected implementation, including lack of time, limited support from colleagues, lack of knowledge about systems and funding processes in general practice and a need for better alignment of the Advance Project resources and practices with general practice information management platforms. Barriers related to professional roles, particularly the lack of clarity and/or limitations in the scope of practice of GPNs, highlighted the importance of defining and supporting the roles that different primary health practice staff could play to support implementation of the model. The findings underline the need for complementary training in the Advance Project model for GPs and practice managers to enable a team-based approach to implementation.

Facilitated case conferences on end-of-life care for persons with advanced dementia-a qualitative study of interactions between long-term care clinicians and family members.

BACKGROUND: Prognostic uncertainty and the need for proxy decision-making owing to cognitive impairment in advanced dementia, adds complexity to end-of-life care planning within the long-term care setting. Case conferences provide a structure to facilitate difficult conversations and an opportunity for family and clinicians to engage in prospective planning, and reach agreement on goals of end-of-life care. OBJECTIVE: To explore interactions between multidisciplinary healthcare clinicians and families during facilitated case conferences on end-of-life care for residents with advanced dementia. METHODS: A qualitative approach was used. Transcripts of audio-recorded case conferences facilitated by a trained registered nurse were coded by two independent researchers and analysed inductively. Transcripts were selected from an available pool until thematic saturation was reached. Emerging themes were confirmed with the wider research group. RESULTS: Thematic saturation was reached after 25 transcripts. An overarching theme concerned the ways in which clinicians and families bridged medical and person-centred perspectives. Subthemes included: details of day-to-day care versus establishing overall goals of care; expression of emotion versus retreat from emotion; and missed opportunities versus expressed cues. Successful facilitation served to 'bridge the gap' between family and clinicians. CONCLUSION: Facilitation of case conferences for residents with advanced dementia should focus on ensuring that: clinicians do not miss opportunities to discuss end-of-life care; discussions on the minutiae of care regularly return to the resident's broader goals of care; and information on dementia and treatments provided by clinicians is integrated with advice by family members regarding the resident's premorbid values and likely preferences.

Provision of end-of-life care in primary care: a survey of issues and outcomes in the Australian context.

OBJECTIVES: To describe general practitioners' (GPs) involvement in end-of-life care, continuity and outcomes of care, and reported management challenges in the Australian context. METHODS: Sixty-three GPs across three Australian states participated in a follow-up survey to report on care provided for decedents in the last year life using a clinic-based data collection process. The study was conducted between September 2018 and August 2019. RESULTS: Approximately one-third of GPs had received formal palliative care training. Practitioners considered themselves as either the primary care coordinator (53.2% of reported patients) or part of the management team (40.4% of reported patients) in the final year of care. In the last week of life, patients frequently experienced reduced appetite (80.6%), fatigue (77.9%) and psychological problems (44.9%), with GPs reporting that the alleviation of these symptoms were less than optimal. Practitioners were highly involved in end-of-life care (eg, home visits, consultations via telephone and family meetings), and perceived higher levels of satisfaction with communication with palliative care services than other external services. For one-third of patients, GPs reported that the last year of care could potentially have been improved. CONCLUSION: There are continuing needs for integration of palliative care training into medical education and reforms of healthcare systems to further support GPs' involvement in end-of-life care. Further, more extensive collection of clinical data is needed to evaluate and support primary care management of end-of-life patients in general practice.

Exploring Symptom Fluctuations and Triggers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Novel Patient-Centred N-of-1 Observational Designs: A Protocol for a Feasibility and Acceptability Study.

BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition of unknown aetiology associated with a range of disabling symptoms, including post-exertional malaise, chronic fatigue, musculoskeletal pain, orthostatic intolerance, unrefreshing sleep, and cognitive dysfunction. ME/CFS is a heterogeneous disorder, with significant variation in symptom type and severity between individuals, as well as within individuals over time. The diversity of ME/CFS symptom presentation makes management challenging; treatments supported by data from randomised controlled trials may not work for all individuals due to the variability in experienced symptoms. Studies using quantitative N-of-1 observational designs involve repeated outcome measurements in an individual over time and can generate rigorous individual-specific conclusions about symptom patterns and triggers in individuals with ME/CFS. This study aims to explore the feasibility and acceptability of using novel patient-centred N-of-1 observational designs to explore symptom fluctuations and triggers in ME/CFS at the individual level. METHODS AND ANALYSIS: Individuals with a medical diagnosis of ME/CFS will be recruited through ME/CFS patient organisations to participate in a series of patient-centred N-of-1 observational studies. Using a wrist-worn electronic diary, participants will complete ecological momentary assessments of fatigue, stress, mood, and cognitive demand, three times per day for a period of 6-12 weeks. Personally relevant symptoms and triggers will also be incorporated into the questionnaire design. Physical activity will be objectively measured via an integrated accelerometer. Feasibility and acceptability outcomes will be assessed including the percentage of diary entries completed, as well as recruitment and retention rate, feasibility of analysing and interpreting the data collected, and participant views about participation elicited via a post-study semi-structured interview. DISCUSSION: This study will assess the feasibility and acceptability of patient-centred N-of-1 observational studies to assess diseases with complex presentations such as ME/CFS, as well as provide individual-level evidence about fluctuations and triggers of ME/CFS symptoms that may aid self-management. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry: ACTRN12618001898246. Registered on 22 November 2018.

End-of-life care in general practice: clinic-based data collection.

BACKGROUND: There are no processes that routinely assess end-of-life care in Australian general practice. This study aimed to develop a data collection process which could collect observational data on end-of-life care from Australian general practitioners (GPs) via a questionnaire and clinical data from general practice software. METHODS: The data collection process was developed based on a modified Delphi study, then pilot tested with GPs through online surveys across three Australian states and data extraction from general practice software, and finally evaluated through participant interviews. RESULTS: The developed data collection process consisted of three questionnaires: Basic Practice Descriptors (32 items), Clinical Data Query (32 items) and GP-completed Questionnaire (21 items). Data extraction from general practice software was performed for 97 decedents of 10 GPs and gathered data on prescriptions, investigations and referral patterns. Reports on care of 272 decedents were provided by 63 GPs. The GP-completed Questionnaire achieved a satisfactory level of validity and reliability. Our interviews with 23 participating GPs demonstrated the feasibility and acceptability of this data collection process in Australian general practice. CONCLUSIONS: The data collection process developed and tested in this study is feasible and acceptable for Australian GPs, and comprehensively covers the major components of end-of-life care. Future studies could develop an automated data extraction tool to reduce the time and recall burden for GPs. These findings will help build a nationwide integrated information network for primary end-of-life care in Australia.

Comparison of end-of-life care for people living in home settings versus residential aged care facilities: A nationwide study among Australian general practitioners.

We have little knowledge of differences in end-of-life care between home settings and residential aged care facilities (RACFs) where people spend most of their last year of life. This study aimed to compare end-of-life care between home settings and RACFs from the perspective of Australian general practitioners (GPs). A descriptive study was conducted with 62 GPs from Western Australia, Queensland and Victoria. Participants were asked to provide reports on end-of-life care of decedents in their practice using a validated clinic-based data collection process developed by our team between September 2018 and August 2019. Of the 213 reported expected deaths, 66.2% mainly lived at home in the last year of life. People living at home were more likely to die at a younger age (median 77 vs. 88, p < 0.001), to be male (51.1% vs. 33.3%, p = 0.01) and to die of cancer (53.9% vs. 4.2%, p < 0.001) compared to those in RACFs. There were no significant differences between the two patient groups for seven out of the eight assessed symptoms, except nausea. GPs' perceived roles in caring for patients and levels of their involvement in provision of common palliative care services were comparable between the two groups. The usual accommodation setting was most frequently considered the preferred place of death in both groups. However, more home residents ended up dying in hospital compared to RACF residents. There were significantly higher frequencies of end-of-life discussions (ORs ranged 5.46-9.82 for all topic comparisons) with GPs associated with people living at home versus RACFs. One opportunity for improved care is through promoting greater involvement of GPs in end-of-life discussions with RACF residents and staff. In general, more Australians could potentially remain at home until death if provided with greater access to essential specialist palliative care services and supportive services in home settings.