Objective: To improve understandings of the enablers and barriers to maintaining good quality of life for people dying, caring and grieving in rural areas.Design and setting: In-depth interviews designed on participatory research principles were held with bereaved carers living in a small community in rural Tasmania. Participants had cared for someone until their death within the three-year period prior.Participants: 19 participants comprising 18 bereaved former carers and one person with a life-limiting illness, and all but four were over retirement age.Study Aim: To explore experiences of end of life care in a rural community.Results: Participants discussed the challenges they experienced during end of life caring, including transport into the city for treatment, and access to basic and specialised services. However, they also reported positive aspects of formal and informal palliative care, and described experiences of personable, expert, flexible and innovative caregiving. Conclusions: The rural location enabled personalised and innovative expressions of care. This research adds new insight into rural end of life palliation, as a complex intersection of supererogation 1 , innovation and place-driven care.What is already known on the subject• There is unmet need for palliative services in rural areas 1 We use the term supererogation in this paper to refer to acts which might be considered additional to essential tasks. 2• Rural Palliative care research is an under-researched area• Informal, community support plays a vital role in end-of-life care What this paper adds• Bereaved carers living in rural areas may have both negative and positive experiences of end-of-life care• Rural end-of-life care is a complex intersection of supererogation, innovation and place-driven interventions• The lived experience of rural carers may improve palliative care

The traditional genetic counseling model encompasses an individualized counseling session that includes the presentation of information about genes, chromosomes, personalized risk assessment, and genetic testing and screening options. Counselors are challenged to balance the provision of enough basic genetic information to ensure clients' understanding of the genetic condition in question with a personalized discussion of what this information means to them. This study explored the perceptions Latinas have about prenatal genetic counseling sessions and aimed to determine if they had preferences about the delivery of care. Data were collected through focus groups and one-on-one, semi-structured interviews of 25 Spanish speaking Latinas who received genetic counseling during their current pregnancy. We implemented grounded theory to evaluate participant responses, and were able to identify common emergent themes. Several themes were identified including an overall satisfaction with their prenatal genetic counseling appointment, desire for a healthy baby, peace of mind following their appointment, lack of desire for invasive testing, and faith in God. Several participants stated a preference for group genetic counseling over the traditional individual genetic counseling model. Our data indicate that Latinas value the information presented at prenatal genetic counseling appointments despite disinterest in pursuing genetic testing or screening and suggest that group prenatal genetic counseling may be an effective alternative to the traditional genetic counseling model in the Latina population.

Background and ObjectivesInternational evidence shows that patients treated at nonurban hospitals experience poorer access to key stroke interventions. Evidence for whether this results in poorer outcomes is conflicting and generally based on administrative or voluntary registry data. The aim of this study was to use prospective high-quality comprehensive nationwide patient-level data to investigate the association between hospital geography and outcomes of patients with stroke and access to best-practice stroke care in New Zealand.MethodsThis is a prospective, multicenter, nationally representative observational study involving all 28 New Zealand acute stroke hospitals (18 nonurban) and affiliated rehabilitation and community services. Consecutive adults admitted to the hospital with acute stroke between May 1 and October 31, 2018, were captured. Outcomes included functional outcome (modified Rankin Scale [mRS] score shift analysis), functional independence (mRS score 0–2), quality of life (EuroQol 5-dimension, 3-level health-related quality of life questionnaire), stroke/vascular events, and death at 3, 6, and 12 months and proportion accessing thrombolysis, thrombectomy, stroke units, key investigations, secondary prevention, and inpatient/community rehabilitation. Results were adjusted for age, sex, ethnicity, stroke severity/type, comorbid conditions, baseline function, and differences in baseline characteristics.ResultsOverall, 2,379 patients were eligible (mean [SD] age 75 [13.7] years; 51.2% male; 1,430 urban, 949 nonurban). Patients treated at nonurban hospitals were more likely to score in a higher mRS score category (greater disability) at 3 (adjusted odds ratio [aOR] 1.28, 95% CI 1.07–1.53), 6 (aOR 1.33, 95% CI 1.07–1.65), and 12 (aOR 1.31, 95% CI 1.06–1.62) months and were more likely to have died (aOR 1.57, 95% CI 1.17–2.12) or experienced recurrent stroke and vascular events at 12 months (aOR 1.94, 95% CI 1.14–3.29 and aOR 1.65, 95% CI 1.09–2.52). Fewer nonurban patients received recommended stroke interventions, including endovascular thrombectomy (aOR 0.25, 95% CI 0.13–0.49), acute stroke unit care (aOR 0.60, 95% CI 0.49–0.73), antiplatelet prescriptions (aOR 0.72, 95% CI 0.58–0.88), ≥60 minutes of daily physical therapy (aOR 0.55, 95% CI 0.40–0.77), and community rehabilitation (aOR 0.69, 95% CI 0.56–0.84).DiscussionPatients managed at nonurban hospitals experience poorer stroke outcomes and reduced access to key stroke interventions across the entire care continuum. Efforts to improve access to high quality stroke care in nonurban hospitals should be a priority.

Background Ethnic inequities in stroke care access have been reported internationally but the impact on outcomes remains unclear. In New Zealand, data on ethnic stroke inequities and resultant effects on outcomes are generally limited and conflicting.Methods In a prospective, nationwide, multi-centre observational study, we recruited consecutive adult patients with confirmed stroke from 28 hospitals between 1 May and 31 October 2018. Patient outcomes: favourable functional outcomes (modified Rankin Scale 0-2); quality of life (EQ-5D-3L); stroke/vascular events; and death at three, six and 12 months. Process measures: access to reperfusion therapies, stroke-units, investigations, secondary prevention, rehabilitation. Multivariate regression analyses assessed associations between ethnicity and outcomes and process measures.Findings The cohort comprised 2,379 patients (median age 78 (IQR 66-85); 51¢2% male; 76¢7% European, 11¢5% Maori, 4¢8% Pacific peoples, 4¢8% Asian). Non-Europeans were younger, had more risk factors, had reduced access to acute stroke units (aOR=0¢78, 95%CI, 0¢60-0¢97), and were less likely to receive a swallow screen within 24 hours of arrival (aOR=0¢72, 0¢53-0¢99) or MRI imaging (OR=0¢66, 0¢52-0¢85). Maori were less frequently prescribed anticoagulants (OR=0¢68, 0¢47-0¢98). Pacific peoples received greater risk factor counselling. Fewer non-Europeans had a favourable mRS score at three (aOR=0¢67, 0¢47-0¢96), six (aOR=0¢63, 0¢40-0¢98) and 12 months (aOR=0¢56, 0¢36-0¢88), and more Maori had died by 12 months (aOR=1¢76, 1¢07-2¢89).Interpretation Non-Europeans, especially Maori, had poorer access to key stroke interventions and experience poorer outcomes. Further optimisation of stroke care targeting high-priority populations are needed to achieve equity.

Background Stroke systems of care differ between larger urban and smaller rural settings and it is unclear to what extent this may impact on patient outcomes. Ethnicity influences stroke risk factors and care delivery as well as patient outcomes in nonstroke settings. Little is known about the impact of ethnicity on poststroke care, especially in Māori and Pacific populations. Objective Our goal is to describe the protocol for the Reducing Ethnic and Geographic Inequities to Optimise New Zealand Stroke Care (REGIONS Care) study. Methods This large, nationwide observational study assesses the impact of rurality and ethnicity on best practice stroke care access and outcomes involving all 28 New Zealand hospitals caring for stroke patients, by capturing every stroke patient admitted to hospital during the 2017-2018 study period. In addition, it explores current access barriers through consumer focus groups and consumer, carer, clinician, manager, and policy-maker surveys. It also assesses the economic impact of care provided at different types of hospitals and to patients of different ethnicities and explores the cost-efficacy of individual interventions and care bundles. Finally, it compares manual data collection to routine health administrative data and explores the feasibility of developing outcome models using only administrative data and the cost-efficacy of using additional manually collected registry data. Regarding sample size estimates, in Part 1, Study A, 2400 participants are needed to identify a 10% difference between up to four geographic subgroups at 90% power with an α value of .05 and 10% to 20% loss to follow-up. In Part 1, Study B, a sample of 7645 participants was expected to include an estimated 850 Māori and 419 Pacific patients and to provide over 90% and over 80% power, respectively. Regarding Part 2, 50% of the patient or carer surveys, 40 provider surveys, and 10 focus groups were needed to achieve saturation of themes. The main outcome is the modified Rankin Scale (mRS) score at 3 months. Secondary outcomes include mRS scores; EQ-5D-3L (5-dimension, 3-level EuroQol questionnaire) scores; stroke recurrence; vascular events; death; readmission at 3, 6, and 12 months; cost of care; and themes around access barriers. Results The study is underway, with national and institutional ethics approvals in place. A total of 2379 patients have been recruited for Part 1, Study A; 6837 patients have been recruited for Part 1, Study B; 10 focus groups have been conducted and 70 surveys have been completed in Part 2. Data collection has essentially been completed, including follow-up assessment; however, primary and secondary analyses, data linkage, data validation, and health economics analysis are still underway. Conclusions The methods of this study may provide the basis for future epidemiological studies that will guide care improvements in other countries and populations...

Conclusion Thrombolysis rates in New Zealand continue to rise and now surpass the more recent 10% Ministry of Health target. The continued reduction in door-to-needle time is also an indication of continued service improvement resulting in better patient outcome. However, there are still to be opportunities for improvement.

Background: Although geographical differences in treatment and outcomes after stroke have been described, we lack evidence on differences in the costs of treatment between urban and nonurban regions. Additionally, it is unclear whether greater costs in one setting are justified given the outcomes achieved. We aimed to compare costs and quality-adjusted life years in people with stroke admitted to urban and nonurban hospitals in New Zealand. Methods: Observational study of patients with stroke admitted to the 28 New Zealand acute stroke hospitals (10 in urban areas) recruited between May and October 2018. Data were collected up to 12 months poststroke including treatments in hospital, inpatient rehabilitation, other health service utilization, aged residential care, productivity, and health-related quality of life. Costs in New Zealand dollars were estimated from a societal perspective and assigned to the initial hospital that patients presented to. Unit prices for 2018 were obtained from government and hospital sources. Multivariable regression analyses were conducted when assessing differences between groups. Results: Of 1510 patients (median age 78 years, 48% female), 607 presented to nonurban and 903 to urban hospitals. Mean hospital costs were greater in urban than nonurban hospitals ($13 191 versus $11 635, P =0.002), as were total costs to 12 months ($22 381 versus $17 217, P <0.001) and quality-adjusted life years to 12 months (0.54 versus 0.46, P <0.001). Differences in costs and quality-adjusted life years remained between groups after adjustment. Depending on the covariates included, costs per additional quality-adjusted life year in the urban hospitals compared to the nonurban hospitals ranged from $65 038 (unadjusted) to $136 125 (covariates: age, sex, prestroke disability, stroke type, severity, and ethnicity). Conclusions: Better outcomes following initial presentation to urban hospitals were associated with greater costs compared to nonurban hospitals. These findings may inform greater targeted expenditure in some nonurban hospitals to improve access to treatment and optimize outcomes.

Introduction: The REGIONS Care project is a New Zealand (NZ) based nationwide project that aims to capture all stroke patients admitted to NZ hospitals exploring ethic and geographic inequities in stroke care access and patient outcomes. Findings from this study will advise the National Stroke Programme strategy. This project includes an organisational survey to assess current availability of interventions and general management approaches in each hospital. Methods: This is a prospective registry based study with up to one year follow-up. Patients are registered into a central database by hospital teams and follow-up is achieved primarily via telephone calls. The outcome data will be adjusted for baseline function and stroke severity among other factors. At this stage the main study is ongoing, but the organisational survey has been completed. Analysis has not yet been finalised. Final and validated results will be presented at the meeting. Results: All NZ hospitals were approached and 100% completed the online survey. Preliminary results found that of these hospitals 82% have an acute stroke unit, 86% have a TIA pathway, but only 57% offer rapid access specialist TIA services. 100% offer thrombolysis, 93% use an EMS pre-notification and rapid ED triage system, and 75% an in-hospital ‘code stroke’ alert. 11% offer onsite thrombectomy, and a further 41% access thrombectomy via rapid inter-hospital transfer. 82% offer inter-disciplinary team review within 24 hours of admission and while 100% have access to OT, PT, and SLT, only 27% have access to a psychologist. 100% offer inpatient and 92% community rehabilitation service while only 11% offer early supported discharge programmes. Only 31% of hospitals have a dedicated stroke rehab unit. While 88% routinely provide stroke patient education, only 52% provide individualised stroke care plans at discharge. Conclusion: These preliminary results show good access to thrombolysis and multi-disciplinary stroke care. However, improvements are needed in access to thrombectomy, rapid specialist TIA services, early supported discharge, dedicated stroke rehabilitation units, psychologists, and individualised patient care plans. Final and additional results will be presented at the conference.