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Abstract Background It is commonplace for lay caregivers to overlook their own health concerns when supporting someone with advanced cancer. During this time, caregivers' needs as patients are often marginalised by health professionals, including General Practitioners (GPs), who may miss the breadth of caregivers' needs by focusing on the practicalities of caregiving. GPs traditionally rely on patients to raise their concerns, and then respond to these concerns, but caregivers as patients may be disinclined to cue their GP. The norms of engagement when caregivers consult their GP are less defined, and how they interact with their GP regarding their own health is under-explored. This sub-study investigates the norms, assumptions and subtleties which govern caregiver-GP consultations, and explores factors affecting their interaction regarding caregivers' own health concerns. Methods We conducted semi-structured interviews with six lay caregivers and 19 health professionals in Brisbane, Australia, and analyzed the interview transcripts thematically. Results Traditional norms of engagement are subjected to assumptions and expectations which caregivers and GPs bring to the consultation. Practice pressures also influence both parties' capacity and willingness to discuss caregivers' health. Nonetheless, some GPs monitor caregivers' health opportunistically. Their interaction is enhanced by the quality of the caregiver-GP relationship and by the GP's skills. Conclusions Caregivers are caught in a paradox whereby their health needs may become subsumed by the care recipient's needs in a setting where patient needs are normally scrutinised and supported. Caregivers may not raise their health concerns with their GP, who instead may need to cue them that it is timely and safe to do so. The routine use of a prompt may help to address caregivers' needs systematically, but it needs to be complemented by GPs' desire and capacity to engage with patients in a caregiving role. The potential difference GPs can make to the health of these patients is substantial.

Abstract Background Caring for a person with progressive cancer creates challenges for caregivers. However the needs of caregivers are often not assessed or recognised by health care providers. Research is also lacking in this area, with little knowledge relating to effective strategies to address the specific needs of caregivers. This paper outlines a study protocol aimed at developing and evaluating the effectiveness of a general practice-based intervention to better meet the needs of caregivers of patients with advanced cancer. Methods/Design Two hundred and sixty caregivers will be randomised into each of two arms of the intervention (520 participants in total) through patients with advanced cancer attending medical and radiation oncology outpatient clinics at two tertiary hospital sites. Consenting caregivers will be followed up for six months, and telephone surveyed at baseline, 1, 3 and 6 months following their entry into the study or until the patient's death, whichever occurs first. Assessment and management of the unmet needs of caregivers in the intervention arm will be facilitated through a specifically developed general practice-based strategy; caregivers in the control group will receive usual care. Qualitative interviews will be conducted with a sample of up to 20 caregivers and 10 GPs at the conclusion of their participation, to explore their views regarding the usefulness of the intervention. Discussion This study will determine whether systematic assessment of caregiver needs supported by caregiver-specific information for General Practitioners is effective in alleviating the unmet needs experienced by caregivers caring for patients with advanced cancer. Trial registration number ISRCTN: ISRCTN43614355

Purpose: The intention of this paper is to develop the personal concept of appropriate access. We report on the service access experiences and opportunities of adults with an acquired brain injury after leaving inpatient rehabilitation. The benefits of appropriate access underpin standards in early and long-term recovery, though users' access needs are highly personal. Methods: The study used a qualitative design involving 16 semi-structured interviews with Australian adults with an acquired brain injury after discharge from inpatient brain rehabilitation. Data were thematically analysed. Results: Three main themes were derived from the analysis. Theme 1 shows that participants valued being steered to services that providers thought appropriate for them early after discharge from inpatient rehabilitation. Theme 2 highlights the tensions between timing and personal recovery and perceived needs. Theme 3 captures participants' insights into the challenges of gaining access vis-a-vis what the system offers and the enablers of actualising appropriate access. Conclusion: The positive experiences of being directed to specialist services early after discharge suggest that continuity of care constitutes appropriateness of access for participants in this study. However, it is also clear that continuity should not displace flexibility in the timing of services, to accord with individuals' perceived needs. This, in addition to enablement of access opportunities, through funding and transport, are important in maintaining a personalised approach. [ABSTRACT FROM AUTHOR]

of futile treatment for end-of-life hospital admissions. Design Retrospective multicentre cohort study involving a clinical audit of hospital admissions. Setting Three Australian public-sector tertiary hospitals. Participants Adult patients who died while admitted to one of the study hospitals over a 6-month period in 2012. Main outcome measures Incidences of futile treatment among end-of-life admissions; length of stay in both ward and intensive care settings for the duration that patients received futile treatments; health system costs associated with futile treatments; monetary valuation of bed days associated with futile treatment. Results The incidence rate of futile treatment in endof-life admissions was 12.1% across the three study hospitals (range 6.0%-19.6%). For admissions involving futile treatment, the mean length of stay following the onset of futile treatment was 15 days, with 5.25 of these days in the intensive care unit. The cost associated with futile bed days was estimated to be $AA12.4 million for the three study hospitals using health system costs, and $A988 000 when using a decision maker's willingness to pay for bed days. This was extrapolated to an annual national health system cost of $A153.1 million and a decision maker's willingness to pay of $A12.3 million. Conclusions The incidence rate and cost of futile treatment in end-of-life admissions varied between hospitals. The overall impact was substantial in terms of both the bed days and cost incurred. An increased awareness of these economic costs may generate support for interventions designed to reduce futile treatments. We did not include emotional hardship or pain and suffering, which represent additional costs. [ABSTRACT FROM AUTHOR]

As the prevalence of type 2 diabetes continues to escalate, health system reform is seeking better patient outcomes through new models of care that aim to provide the most appropriate care when needed. Patients' experiences of service innovations can shed light on the successes and challenges of implementing change. This paper explores patients' views of a new model of integrated care for patients with type 2 diabetes. A mixed-methods, randomised control trial evaluated a beacon clinic model of care for complex type 2 diabetes led by specialist general practitioners ( GPs) in primary care settings in Brisbane, Australia. In this qualitative sub-study conducted between May 2014 and January 2015, 25 consenting participants were re-interviewed after 12 months using semi-structured questions, to explore their experiences of the new model of care. Interview transcripts were analysed thematically. In the first theme, Organised for patient-centred care, patients appraised the structural elements of the clinic. For most, it was an enabling experience which included convenience, flexibility and prompt communication back to the referring GPs. The preferences of a minority were partly realised, as they tried to understand the clinical purpose in comparison with traditional care. The second theme, Positioned as partners in care, revealed the pivotal role of patient-clinician relationships in patients' engagement with advice and self-care. Most found clinicians' collaborative approach engaging and motivating. A small minority with contextual concerns were disappointed with the focus on diabetes and struggled to engage fully with the model. Most participants valued this model of care, which reflects a capacity to manage the variable and complex needs of most patients referred for care. However, multi-level strategies are also needed to enhance patients' engagement with care and the sustainability of integrated diabetes care. [ABSTRACT FROM AUTHOR]

Background A new model of complex diabetes care is provided by a multidisciplinary team which incorporates general practitioner (GP) Clinical Fellows supported by an Endocrinologist and diabetes educator within a community-based general practice setting. This study evaluates the health and clinical benefits of the new model of care, assesses the acceptability of the model to patients, GPs and other health professionals, and examines the cost-effectiveness of the model. Methods and design The study is an open, non-inferiority randomised controlled trial with data collected at baseline, 6 and 12 months. Participants are identified from new patients on hospital-based diabetes outpatient clinic waiting lists and new GP referrals. Eligible consenting patients are randomised to either a community practice site (intervention) or a hospital site (usual care). In the intervention model, medical care is led by a GP Clinical Fellow in partnership with an Endocrinologist. Quantitative measures include clinical indicators with HbA1c as the primary outcome; patient-reported outcomes include health-related quality of life, mental health and satisfaction with care. Qualitative methods will be used to explore the perspectives and experiences of patients and providers regarding the new model of care. An economic evaluation will also be undertaken. Discussion This model of care seeks to improve the quality and safety of healthcare at the interface between the hospital and primary care sectors for patients with complex diabetes. The study will provide empirical evidence about the impact of the model of care on health outcomes, patient and clinician satisfaction, as well as any economic impacts. Trial registration Clinical Trials Registry Number: ACTRN12612000380897 [ABSTRACT FROM AUTHOR]

Background: Caring for a person with progressive cancer creates challenges for caregivers. However the needs of caregivers are often not assessed or recognised by health care providers. Research is also lacking in this area, with little knowledge relating to effective strategies to address the specific needs of caregivers. This paper outlines a study protocol aimed at developing and evaluating the effectiveness of a general practice-based intervention to better meet the needs of caregivers of patients with advanced cancer. Methods/Design: Two hundred and sixty caregivers will be randomised into each of two arms of the intervention (520 participants in total) through patients with advanced cancer attending medical and radiation oncology outpatient clinics at two tertiary hospital sites. Consenting caregivers will be followed up for six months, and telephone surveyed at baseline, 1, 3 and 6 months following their entry into the study or until the patient's death, whichever occurs first. Assessment and management of the unmet needs of caregivers in the intervention arm will be facilitated through a specifically developed general practice-based strategy; caregivers in the control group will receive usual care. Qualitative interviews will be conducted with a sample of up to 20 caregivers and 10 GPs at the conclusion of their participation, to explore their views regarding the usefulness of the intervention. Discussion: This study will determine whether systematic assessment of caregiver needs supported by caregiverspecific information for General Practitioners is effective in alleviating the unmet needs experienced by caregivers caring for patients with advanced cancer. Trial registration number: ISRCTN: ISRCTN43614355 [ABSTRACT FROM AUTHOR]