Community views on the secondary use of general practice data: Findings from a mixed-methods study.

INTRODUCTION: General practice data, particularly when combined with hospital and other health service data through data linkage, are increasingly being used for quality assurance, evaluation, health service planning and research. In this study, we explored community views on sharing general practice data for secondary purposes, including research, to establish what concerns and conditions need to be addressed in the process of developing a social licence to support such use. METHODS: We used a mixed-methods approach with focus groups (November-December 2021), followed by a cross-sectional survey (March-April 2022). RESULTS: The participants in this study strongly supported sharing general practice data with the clinicians responsible for their care, and where there were direct benefits for individual patients. Over 90% of survey participants (N = 2604) were willing to share their general practice information to directly support their health care, that is, for the primary purpose of collection. There was less support for sharing data for secondary purposes such as research and health service planning (36% and 45% respectively in broad agreement) or for linking general practice data to data in the education, social services and criminal justice systems (30%-36%). A substantial minority of participants were unsure or could not see how benefits would arise from sharing data for secondary purposes. Participants were concerned about the potential for privacy breaches, discrimination and data misuse and they wanted greater transparency and an opportunity to consent to data release. CONCLUSION: The findings of this study suggest that the public may be more concerned about sharing general practice data for secondary purposes than they are about sharing data collected in other settings. Sharing general practice data more broadly will require careful attention to patient and public concerns, including focusing on the factors that will sustain trust and legitimacy in general practice and GPs. PATIENT AND PUBLIC CONTRIBUTION: Members of the public were participants in the study. Data produced from their participation generated study findings. CLINICAL TRIAL REGISTRATION: Not applicable.

Utilisation of general practice health assessments around an aged care assessment is associated with lower mortality risk in older Australians.

OBJECTIVE: (i) to describe the general practitioner utilisation of health assessments, management plans, coordination of team care arrangements and medication review item numbers within 6 months of an aged care eligibility assessment for home care packages (HCP) and (ii) investigate the impact of health assessments on the risk of mortality and entry into permanent residential aged care (PRAC) of individuals accessing HCP. DESIGN AND SETTING: retrospective cohort study utilising data from the Registry of Senior Australians (ROSA) was conducted. SUBJECTS: 75,172 individuals aged ≥75 years who received HCP between 2011 and 2015. OUTCOME MEASURE: for objective 1: the use of comprehensive assessments (Medicare Benefits Schedule (MBS) items 705 or 707), management plans (MBS 721), coordination of team care arrangements (MBS 723), and medication reviews (MBS 900). For objective 2: time to death and entry into PRAC. RESULTS: of the 75,172 individuals, 28.2% (95% confidence interval (CI): 27.8-8.5%) had comprehensive assessments, 36.7% (95% CI: 36.3-37.0%) had management plans, 33.0% (95% CI: 32.7-33.3%) received coordination of team care arrangements and 5.4% (95% CI: 5.2-5.5%) had medication reviews. Individuals with a comprehensive assessment had a 5% lower risk of mortality (adjusted hazard ratio (aHR), 95% CI = 0.95, 0.92-0.98) but 5% higher risk of transition to PRAC (adjusted subdistribution HRs, 95% CI = 1.05, 1.02-1.08) compared to those who did not have these services. CONCLUSION: the utilisation of health assessments was associated with a lower risk of mortality. There is an opportunity for increased use of item numbers in frailer individuals.

Feasibility and acceptability of commonly used screening instruments to identify frailty among community-dwelling older people: a mixed methods study.

BACKGROUND: Frailty exposes older people to an elevated risk of a range of negative outcomes. Emerging evidence that frailty can be effectively treated within community settings has stimulated calls for more proactive screening within primary care. Assessing feasibility is a critical preliminary step in assessing the efficacy of interventions such as screening. However, few studies have explored the feasibility and acceptability of administering frailty screening instruments within general practice, and even fewer have incorporated patient perspectives. Our study had three objectives: To 1) assess overall feasibility of the instruments (completion time and rate); 2) assess patient acceptability towards the instruments; and 3) assess the feasibility and acceptability of the instruments to administering nurses. METHODS: The feasibility and acceptability of several frailty screening instruments (PRISMA-7, Edmonton Frail Scale, FRAIL Scale Questionnaire, Gait Speed, Groningen Frailty Indicator, Reported Edmonton Frail Scale and Kihon Checklist) was explored within the context of a larger diagnostic test accuracy (DTA) study. Completion time and rate was collected for all participants (N = 243). A sub-sample of patients (n = 30) rated each instrument for ease of completion and provided comment on perceived acceptability. Lastly, five of six administering nurses involved in the DTA study participated in semi-structured face-to-face interviews, rating the instruments against several feasibility and acceptability criteria (time, space, equipment, skill required to implement, acceptability to patients and nurses, ease of scoring) and providing comment on their responses. RESULTS: The PRISMA-7 returned the highest overall feasibility and acceptability, requiring minimal space, equipment, skills and time to implement, and returning the fastest completion rate and highest patient and nurse acceptability rating. All screening instruments were faster to implement than the two reference standards (Fried's Frailty Phenotype and Frailty Index). Self-administered instruments were subject to lower rates of completion than nurse-administered instruments. CONCLUSIONS: This study has demonstrated that a number of commonly used frailty screening instruments are potentially feasible for implementation within general practice. Ultimately, more research is needed to determine how contextual factors, such as differences in individual patient and clinician preferences, setting and system factors, impact on the feasibility of screening in practice.

Should we screen for frailty in primary care settings? A fresh perspective on the frailty evidence base: A narrative review.

With older adults living longer, health service providers have increasingly turned their attention towards frailty and its significant consequences for health and well-being. Consequently, frailty screening has gained momentum as a possible health policy answer to the question of what can be done to prevent frailty's onset and progression. However, who should be screened for frailty, where and when remains a subject of extensive debate. The purpose of this narrative review is to explore the dimensions of this question with reference to Wilson and Jungner's time-tested and widely accepted principles for acceptable screening within community settings. Although the balance of the emerging evidence to support frailty screening is promising, significant gaps in the evidence base remain. Consequently, when assessed against Wilson and Jungner's principles, extensive population screening does not appear to be supported by the evidence. However, screening for the purpose of case-finding may prove useful among older adults.

Application of an electronic Frailty Index in Australian primary care: data quality and feasibility assessment.

BACKGROUND: The primary care setting is the ideal location for identifying the condition of frailty in older adults. AIMS: The aim of this pragmatic study was twofold: (1) to identify data items to extract the data required for an electronic Frailty Index (eFI) from electronic health records (EHRs); and (2) test the ability of an eFI to accurately and feasibly identify frailty in older adults. METHODS: In a rural South Australian primary care clinic, we derived an eFI from routinely collected EHRs using methodology described by Clegg et al. We assessed feasibility and accuracy of the eFI, including complexities in data extraction. The reference standard for comparison was Fried's frailty phenotype. RESULTS: The mean (SD) age of participants was 80.2 (4.8) years, with 36 (60.0%) female (n = 60). Frailty prevalence was 21.7% by Fried's frailty phenotype, and 35.0% by eFI (scores > 0.21). When deriving the eFI, 85% of EHRs were perceived as easy or neutral difficulty to extract the required data from. Complexities in data extraction were present in EHRs of patients with multiple health problems and/or where the majority of data items were located other than on the patient's summary problem list. DISCUSSION: This study demonstrated that it is entirely feasible to extract an eFI from routinely collected Australian primary care data. We have outlined a process for extracting an eFI from EHRs without needing to modify existing infrastructure. Results from this study can inform the development of automated eFIs, including which data items to best access data from.

A population analysis of self-management and health-related quality of life for chronic musculoskeletal conditions.

BACKGROUND: There is growing policy emphasis on self-management as an essential component of musculoskeletal chronic care models. Underpinning this drive is the assumption that with correct 'informational' framing people will better manage their condition's progression and thereby maintain quality of life. OBJECTIVE: To assess associations between self-management behaviours and health-related quality of life for people with chronic musculoskeletal conditions. DESIGN: Using survey data from health census and follow-up structured telephone interviews, linear regression (cumulatively adjusted for potential confounders) and logistic regression examined associations between use of specific self-management behaviours and quality of life. SETTING AND PARTICIPANTS: A total of 885 respondents (2012) who indicated still having a musculoskeletal condition reported in a 2010 health census (Port Lincoln, South Australia). VARIABLES: Specific self-management activities, age, sex, education, marital status, smoking, comorbidities and pain. OUTCOME MEASURE: EQ-5D-5L. RESULTS: Exercise (63%) and diet (19%) were the most commonly reported self-management activities used to manage musculoskeletal conditions. About 24% reported not using any specific self-management activities. Involvement in self-management showed no association with quality of life, with and without adjustment for confounders. Diet had a negative association with quality of life as did use of formal support (self-management course or community group support). DISCUSSION: Taking a real-world perspective, these findings raise important questions about how people currently engage with self-management activities and the kinds of outcomes that can be expected from undertaking these activities. The timing of people's uptake of self-management within the musculoskeletal disease continuum is an issue requiring further attention in both research and practice.

Perspectives of Frailty and Frailty Screening: Protocol for a Collaborative Knowledge Translation Approach and Qualitative Study of Stakeholder Understandings and Experiences.

BACKGROUND: Accompanying the unprecedented growth in the older adult population worldwide is an increase in the prevalence of frailty, an age-related clinical state of increased vulnerability to stressor events. This increased vulnerability results in lower social engagement and quality of life, increased dependency, and higher rates of morbidity, health service utilization and mortality. Early identification of frailty is necessary to guide implementation of interventions to prevent associated functional decline. Consensus is lacking on how to clinically recognize and manage frailty. It is unknown how healthcare providers and healthcare consumers understand and perceive frailty, whether or not they regard frailty as a public health concern; and information on the indirect and direct experiences of consumer and healthcare provider groups towards frailty are markedly limited. METHODS: We will conduct a qualitative study of consumer, practice nurse, general practitioner, emergency department physician, and orthopedic surgeons' perspectives of frailty and frailty screening in metropolitan and non-metropolitan South Australia. We will use tailored combinations of semi-structured interviews and arts-based data collection methods depending on each stakeholder group, followed by inductive and iterative analysis of data using qualitative description. DISCUSSION: Using stakeholder driven approaches to understanding and addressing frailty and frailty screening in context is critical as the prevalence and burden of frailty is likely to increase worldwide. We will use the findings from the Perceptions of Frailty and Frailty Screening study to inform a context-driven identification, implementation and evaluation of a frailty-screening tool; drive awareness, knowledge, and skills development strategies across stakeholder groups; and guide future efforts to embed emerging knowledge about frailty and its management across diverse South Australian contexts using a collaborative knowledge translation approach. Study findings will help achieve a coordinated frailty and healthy ageing strategy with relevance to other jurisdictions in Australia and abroad, and application of the stakeholder driven approach will help illuminate how its applicability to other jurisdictions.

Unconnected and out-of-sight: identifying health care non-users with unmet needs.

BACKGROUND: While current debates on how to deliver sustainable health care recognise socio-economic dimensions to health service use, attention has focussed on how to reduce demand for services. However, the measures of demand may not account for a subgroup of the population who to date have remained out of sight because they do not access health services. This study aimed to describe the characteristics of individuals who self-reported having fair or poor health but did not use health services. METHODS: Data from the 2010 LINKIN health census survey (n = 7895) and the 2013 HILDA National Panel Survey (n = 13,609) were analysed focussing on the population who self-reported their overall health status as fair or poor. Simple and multivariable logistic regression modelling examined characteristics associated with a lack of health services use. The outcome measure of interest was no health service use in the previous 12 months and co-variables included demographic and socioeconomic indicators, health-related quality of life, having no health condition and health risk factors. RESULTS: Overall 21% of LINKIN respondents reported their overall health as fair or poor compared to 18% in the HILDA dataset. In LINKIN, 4.4% of those reporting fair or poor health, reported not using any health service provider in the past 12 months. Similarly, 4.5% of HILDA respondents were non-users. When adjusted for multiple co-variables, unemployment (aOR 3.24, 95% CI 1.28-8.17), educational level at Year 10 or below (aOR 1.94, 95% CI 1.02-3.70) and smoking (aOR 2.67, 95% CI 1.38-5.17) were significantly associated with non-use for the LINKIN data, as did lack of health conditions (aOR 0.18, 95% CI 0.08-0.41). The HILDA regression analyses indicated the same directions of association between equivalent variables and lack of health service use, with the exception of educational level. CONCLUSIONS: In line with recent assertions on real denominators in health need, this study describes those people rarely included in the population at risk and the potential for systematic bias towards the overestimation of the effectiveness of interventions. This study informs current policy debates and planning, including how we connect with hard-to-reach populations and how this sub-group might be more appropriately included when measuring effectiveness of health policies and programs.

Translating a health service intervention into a rural setting: lessons learned.

BACKGROUND: Limited research exists on the process of applying knowledge translation (KT) methodology to a rural-based population health intervention. METHODS: This study reports on the implementation and translational stages of a previously described Co-creating KT (Co-KT) framework in the rural town of Port Lincoln, South Australia (population: 14,000). The Co-KT framework involves five steps: (i) collecting local data; (ii) building stakeholder relationships; (iii) designing an evidence-based intervention incorporating local knowledge; (iv) implementation and evaluation of the intervention; and (v) translating the research into policy and practice. Barriers and enablers to the overall Co-KT implementation process were identified. Our intervention focused on musculoskeletal (MSK) conditions. RESULTS: Although the Co-KT framework was valuable in engaging with the community, translating the final intervention into daily clinical practice was prevented by a lack of an accessible policy or financial framework to anchor the appropriate intervention, a lack of continued engagement with stakeholders, access problems to general practitioners (GPs) and Allied Health Professionals; and the paucity of referrals from GPs to Allied Health Professionals. Consequently, while many aspects of the intervention were successful, including the improvement of both function and pain in study participants, the full implementation of the Co-KT framework was not possible. DISCUSSION: This study implemented and evaluated a Co-KT framework for a population with MSK conditions, linking locally generated health care system knowledge with academic input. Further policy, health system changes, and on-the-ground support are needed to overcome the identified implementation challenges in order to create sustainable and effective system change.

A randomized controlled trial to assess the clinical and cost effectiveness of a nurse-led Antenatal Asthma Management Service in South Australia (AAMS study).

BACKGROUND: Pregnancy presents a unique situation for the management of asthma as it can alter the course of asthma severity and its treatment, which in turn can affect pregnancy outcomes. Despite awareness of the substantial adverse effects associated with asthma during pregnancy, little has been done to improve its management and reduce associated perinatal morbidity and mortality. The aim of this randomized controlled trial is to evaluate the clinical and cost effectiveness of an Antenatal Asthma Management Service. DESIGN: Multicentre, randomized controlled trial. INCLUSION CRITERIA: Women with physician diagnosed asthma, which is not currently in remission, who are less than 20 weeks gestation with a singleton pregnancy and do not have a chronic medical condition.Trial entry and randomization: Eligible women with asthma, stratified by treatment site, disease severity and parity, will be randomized into either the 'Standard Care Group' or the 'Intervention Group'.Study groups: Both groups will be followed prospectively throughout pregnancy. Women in the 'Standard Care Group' will receive routine obstetric care reflecting current clinical practice in Australian hospitals. Women in the 'Intervention Group' will receive additional care through the nurse-led Antenatal Asthma Management Service, based in the antenatal outpatient clinic. Women will receive asthma education with a full assessment of their asthma at 18, 24, 30 and 36 weeks gestation. Each antenatal visit will include a 60 min session where asthma management skills are assessed including: medication adherence and knowledge, inhaler device technique, recognition of asthma deterioration and possession of a written asthma action plan. Furthermore, subjects will receive education about asthma control and management skills including trigger avoidance and smoking cessation counseling when appropriate.Primary study outcome: Asthma exacerbations during pregnancy. SAMPLE SIZE: A sample size of 378 women will be sufficient to show an absolute reduction in asthma exacerbations during pregnancy of 20% (alpha 0.05 two-tailed, 90% power, 5% loss to follow-up). DISCUSSION: The integration of an asthma education program within the antenatal clinic setting has the significant potential to improve the participation of pregnant women in the self-management of their asthma, reduce asthma exacerbations and improve perinatal health outcomes. TRIAL REGISTRATION: ACTRN12613000244707.

Practice nurse involvement in primary care depression management: an observational cost-effectiveness analysis.

BACKGROUND: Most evidence on the effect of collaborative care for depression is derived in the selective environment of randomised controlled trials. In collaborative care, practice nurses may act as case managers. The Primary Care Services Improvement Project (PCSIP) aimed to assess the cost-effectiveness of alternative models of practice nurse involvement in a real world Australian setting. Previous analyses have demonstrated the value of high level practice nurse involvement in the management of diabetes and obesity. This paper reports on their value in the management of depression. METHODS: General practices were assigned to a low or high model of care based on observed levels of practice nurse involvement in clinical-based activities for the management of depression (i.e. percentage of depression patients seen, percentage of consultation time spent on clinical-based activities). Linked, routinely collected data was used to determine patient level depression outcomes (proportion of depression-free days) and health service usage costs. Standardised depression assessment tools were not routinely used, therefore a classification framework to determine the patient's depressive state was developed using proxy measures (e.g. symptoms, medications, referrals, hospitalisations and suicide attempts). Regression analyses of costs and depression outcomes were conducted, using propensity weighting to control for potential confounders. RESULTS: Capacity to determine depressive state using the classification framework was dependent upon the level of detail provided in medical records. While antidepressant medication prescriptions were a strong indicator of depressive state, they could not be relied upon as the sole measure. Propensity score weighted analyses of total depression-related costs and depression outcomes, found that the high level model of care cost more (95% CI: -$314.76 to $584) and resulted in 5% less depression-free days (95% CI: -0.15 to 0.05), compared to the low level model. However, this result was highly uncertain, as shown by the confidence intervals. CONCLUSIONS: Classification of patients' depressive state was feasible, but time consuming, using the classification framework proposed. Further validation of the framework is required. Unlike the analyses of diabetes and obesity management, no significant differences in the proportion of depression-free days or health service costs were found between the alternative levels of practice nurse involvement.

The medical schools outcomes database project: Australian medical student characteristics.

BACKGROUND: Global medical workforce requirements highlight the need for effective workforce planning, with the overall aims being to alleviate doctor shortages and prevent maldistribution. The Medical Schools Outcomes Database and Longitudinal Tracking (MSOD) Project provides a foundation for evaluating outcomes of medical education programs against specified workforce objectives (including rural and areas of workforce needs), assisting in medical workforce planning, and provision of a national research resource. This paper describes the methodology and baseline results for the MSOD project. METHODS: The MSOD Project is a prospective longitudinal multiple-cohort study. The project invites all commencing and completing Australian medical students to complete short questionnaires. Participants are then asked to participate in four follow-up surveys at 1, 3, 5 and 8 years after graduation. RESULTS: Since 2005, 30,635 responses for medical students (22,126 commencing students and 8,509 completing students) in Australia have been collected. To date, overall eligible cohort response rates are 91% for commencing students, and 83% for completing students. Eighty three percent of completing medical student respondents had also completed a commencing questionnaire.Approximately 80% of medical students at Australian medical schools are Australian citizens. Australian medical schools have only small proportions of Indigenous students. One third of medical students speak a language other than English at home.The top three vocational choices for commencing medical students were surgery, paediatrics and child health and general practice. The top three vocational choices for completing students were surgery, adult medicine/ physician, and general practice. Overall, 75.7% of medical students changed their first career preference from commencement to exit from medical school.Most commencing and completing medical students wish to have their future medical practice in capital cities or in major urban centers. Only 8.1% of commencing students and 4.6% of completing students stated an intention to have their future medical practice in smaller towns and small communities. CONCLUSIONS: The MSOD longitudinal project is now an established national resource that is beginning to generate significant research outputs, along with providing key information for workforce planning and policy makers. The project has now expanded to enrol New Zealand medical students.

Practice nurse involvement in general practice clinical care: policy and funding issues need resolution.

In Australia, primary care-based funding initiatives have been implemented to encourage general practices to employ practice nurses. The aim of this paper is to discuss limitations of the current funding and policy arrangements in enhancing the clinical role of practice nurses in the management of chronic conditions. This paper draws on the results of a real-world economic evaluation, the Primary Care Services Improvement Project (PCSIP). The PCSIP linked routinely collected clinical and resource use data to undertake a risk-adjusted cost-effectiveness analysis of increased practice nurse involvement in clinical-based activities for the management of diabetes and obesity. The findings of the PCSIP suggested that the active involvement of practice nurses in collaborative clinical-based activities is cost-effective, as well as addressing general practice workforce issues. Although primary healthcare organisations (e.g. Medicare Locals) can play a key role in supporting enhanced practice nurse roles, improvements to practice nurse funding models could further encourage more efficient use of an important resource.

Projected burden and distribution of elevated blood pressure levels and its consequence among adolescents in sub-Saharan Africa.

Background: There is minimal data on the number of adolescents in sub-Saharan Africa (SSA) with elevated blood pressure (BP) at increased risk of future cardiovascular events. Combining country-specific population data with data derived from two previously conducted meta-analyses (one African-specific, one based on international cohorts), we sought to address this knowledge deficit. Methods: We used meta-analysis data from 37 926 adolescents participating in 36 contemporary SSA studies to generate sex-specific proportions of adolescents aged 10-14 and 15-19 years with elevated BP. The estimates were applied to the 2021 World Bank population data for each country in SSA. We then applied the rate of cardiovascular events attributable to elevated BP levels, derived from a meta-analysis of 17 observational, longitudinal cohort studies comprising 4.5 million young adults (non-African), to determine the excess number of cardiovascular events linked to hypertension among those aged 15-19 years transitioning to adulthood. Results: The estimated prevalence of elevated BP among male and female adolescents aged 10-14 years living in SSA was 7.2% (95% confidence interval (CI) = 4.9-9.9) and 6.9% (95% CI = 4.7-9.5), respectively, which increased to 13.0% (95% CI = 10.6-15.6) and 12.5% (95% CI = 10.4-15.3) among male and female adolescents aged 15-19 years, respectively. Consequently, we estimate that 13.6/138.0 million (95% CI = 10.4-17.3) male and 12.9/135.7 million (95% CI = 9.83-16.3) female adolescents living in SSA have elevated BP. Among the estimated 16.1 million adolescents aged 15-19 years with elevated BP approaching adulthood, the projected excess in cardiovascular events attributable to hypertension (vs normotension) is 201 000 (95% CI = 115 000-322 000) to 503 000 (95% CI = 286 000-805 000) over the next 10-25 years. Conclusions: Based on the best available data, we estimate that 26.5 million adolescents living in SSA have elevated BP. If left undetected and untreated among those approaching adulthood (those aged 15-19 years), they will experience >0.5 million excess cardiovascular events associated with persistently elevated BP within the next 25 years. Registration: PROSPERO: CRD42022297948.

IMPAACT: IMproving the PArticipAtion of older people in policy decision-making on common health CondiTions - a study protocol.

INTRODUCTION: Rapid population ageing is a demographic trend being experienced and documented worldwide. While increased health screening and assessment may help mitigate the burden of illness in older people, issues such as misdiagnosis may affect access to interventions. This study aims to elicit the values and preferences of evidence-informed older people living in the community on early screening for common health conditions (cardiovascular disease, diabetes, dementia and frailty). The study will proceed in three Phases: (1) generating recommendations of older people through a series of Citizens' Juries; (2) obtaining feedback from a diverse range of stakeholder groups on the jury findings; and (3) co-designing a set of Knowledge Translation resources to facilitate implementation into research, policy and practice. Conditions were chosen to reflect common health conditions characterised by increasing prevalence with age, but which have been underexamined through a Citizens' Jury methodology. METHODS AND ANALYSIS: This study will be conducted in three Phases-(1) Citizens' Juries, (2) Policy Roundtables and (3) Production of Knowledge Translation resources. First, older people aged 50+ (n=80), including those from traditionally hard-to-reach and diverse groups, will be purposively recruited to four Citizen Juries. Second, representatives from a range of key stakeholder groups, including consumers and carers, health and aged care policymakers, general practitioners, practice nurses, geriatricians, allied health practitioners, pharmaceutical companies, private health insurers and community and aged care providers (n=40) will be purposively recruited for two Policy Roundtables. Finally, two researchers and six purposively recruited consumers will co-design Knowledge Translation resources. Thematic analysis will be performed on documentation and transcripts. ETHICS AND DISSEMINATION: Ethical approval has been obtained through the Torrens University Human Research Ethics Committee. Participants will give written informed consent. Findings will be disseminated through development of a policy brief and lay summary, peer-reviewed publications, conference presentations and seminars.

Patients' experiences of referral for colorectal cancer.

BACKGROUND: Outcomes for colorectal cancer patients vary significantly. Compared to other countries, Australia has a good record with patient outcomes, yet there is little information available on the referral pathway. This paper explores the views of Australian patients and their experiences of referral for colorectal cancer treatment following diagnosis; the aim was to improve our understanding of the referral pathway and guide the development of future interventions. METHODS: A purposive sampling strategy was used, recruiting 29 patients representing urban and rural areas from 3 Australian states who participated in 4 focus groups. Seven patients provided individual interviews to supplement the data. Recordings were transcribed verbatim, data was coded with NVivo software and analysed thematically before deductive analysis. RESULTS: Four aspects of the referral process were identified by patients, namely detection/diagnosis, referral for initial treatment/specialist care, the roles of the GP/specialist, and the patient's perceived involvement in the process. The referral process was characterised by a lack of patient involvement, with few examples of shared decision-making and few examples of limited choice. However, patients did not always feel they had the knowledge to make informed decisions. Information exchange was highly valued by patients when it occurred, and it increased their satisfaction with the process. Other factors mediating care included the use of the public versus private health system, the quality of information exchange (GP to specialist and GP to patient), continuity of care between GP and specialist, and the extent of information provision when patients moved between specialist and GP care. CONCLUSIONS: Patients described poor GP continuity, ad hoc organisational systems and limited information exchange, at both interpersonal and inter-organisational levels, all leading to sub-optimal care. Implementation of a system of information feedback to GPs and engagement with them might improve information exchange for patients, enabling them to be more involved in improved referral outcomes.

Discharge-planning for long-term care needs: the values and priorities of older people, their younger relatives and health professionals.

Discharge-planning decisions about long-term care (LTC) can be difficult and distressing for older people, families and discharge-planning health professionals. Retrospective research suggests that despite good intentions and a shared focus on the best interests of the older person, stakeholders may hold very different values about good outcomes and how to decide them. We aimed to compare the opinions and values of frail elders living at home, younger relatives and health professionals experienced in discharge-planning, prospectively: before, not after, a LTC decision. We interviewed three types of stakeholders (10 older people, 8 relatives and 18 health professionals) using a hypothetical vignette about a frail elder leaving hospital. In a mixed methods design, we quantitatively compared the discharge plans and decision-makers that stakeholders suggested, and qualitatively analysed the 36 interview transcripts for participants' articulation of underlying values during these discussions. Older participants often suggested safe restrictive options (residential care, proxy decision-making) for the hypothetical frail elder, while advocating autonomy for themselves. Younger people generally endorsed autonomous decision-making and less restrictive discharge options especially if the elder was mentally competent, but reported difficult ethical tensions between safety and autonomy. Individual personality and preferences, mental capacity, and the importance of personal care in supporting autonomy were central themes consistent with the Ecological Theory of Aging. Accordingly, discharge planners can usefully articulate the balance of safety and autonomy, conceptualizing home care as maintaining independence rather than accepting dependence. Ethical training should incorporate sophisticated models of practice specifying both psychological and physical safety as components of beneficence. Few elders adopt a consumer approach to LTC: health professionals can encourage mid-life adults to consider later care needs when planning for retirement.

Profiling bone and joint problems and health service use in an Australian regional population: the Port Lincoln Health Study.

OBJECTIVES: To describe the burden of bone and joint problems (BJP) in a defined regional population, and to identify characteristics and service-usage patterns. METHODS: In 2010, a health census of adults aged ≥15 years was conducted in Port Lincoln, South Australia. A follow-up computer-assisted telephone interview provided more specific information about those with BJP. RESULTS: Overall, 3350 people (42%) reported current BJP. General practitioners (GP) were the most commonly used provider (85%). People with BJP were also 85% more likely to visit chiropractors, twice as likely to visit physiotherapists and 34% more likely to visit Accident and Emergency or GP out of hours (compared with the rest of the population). Among the phenotypes, those with BJP with co-morbidities were more likely to visit GP, had a significantly higher mean pain score and higher levels of depression or anxiety compared with those with BJP only. Those with BJP only were more likely to visit physiotherapists. CONCLUSIONS: GP were significant providers for those with co-morbidities, the group who also reported higher levels of pain and mental distress. GP have a central role in effectively managing this phenotype within the BJP population including linking allied health professionals with general practice to manage BJP more efficiently.

Referral pathways in colorectal cancer: an audit of surgeons's records.

PURPOSE: To explore the referral pathways of patients with newly diagnosed colorectal cancer to surgeons. METHOD: Australian surgeons from three states completed a questionnaire and their records were audited. RESULTS: Thirty-three surgeons provided data on 530 patients seen in the preceding 12 months. The median time between colonoscopy and first surgical consult was 10 days, with 19% of patients waiting more than 28 days. After adjustment for clustering, no surgeon factors were associated with the number of days between colonoscopy and surgery. A report back to the general practitioner (GP) was found in 78% of patients' records. This feedback varied between surgeons but none of the specific surgeon characteristics examined could explain this. CONCLUSION: Surgeons usually communicated with GP regardless of whether they were the referral source. However, communication with GP varied considerably among surgeons, with no evidence of a report to the GP in one-fifth of cases.