PARTICIPANT CHOICES TOWARDS RECEIVING POTENTIAL INCIDENTAL GENETIC FINDINGS IN AN AUSTRALIAN NEPHROLOGY RESEARCH GENOMICS STUDY

A MALLETT1,2, C PATEL1,3, H MCCARTHY1,4, A MALLAWAARACHCHI1,5, Z STARK1,6, C SIMONS1,7, C QUINLAN1,8

1KidGen Renal Genetics Flagship, Australian Genomic Health Alliance, Murdoch Childrens Research Institute, Melbourne, VIC; 2Kidney Health Service, Royal Brisbane and Women’s Hospital, Brisbane, QLD; 3Genetic Health Queensland, Royal Brisbane & Women’s Hospital, Brisbane, QLD; 4Departments of Nephrology, Sydney Children’s Hospitals Network, Sydney, NSW; 5Department of Clinical Genetics, Liverpool Hospital, Sydney, NSW; 6Victorian Clinical Genetics Service, Murdoch Childrens Research Institute, Melbourne, VIC; 7Institute for Molecular Bioscience, The University of Queensland, Brisbane, QLD; 8Department of Nephrology, Royal Children’s Hospital, Melbourne, VIC

Aim: To describe Australian participant choices to receiving potential incidental findings (Ifs) as part of participation in a nephrology research genomics project.

Background: Potential incidental findings (IFs) in genomics remain a concern for clinicians, scientists, patients and participants alike. The informed decisions taken by Australian participants with regards to IFs are unclear.

Methods: Retrospective review of consent towards IFs was undertaken within a national study of diagnostically refractory inherited kidney disease (05/2014-04/2017). Relative risk, Mann-Whitney U-Test and T-Test analyses were undertaken to assess relationships between audited variables.

Results: 133 participants from 33 unrelated families participated. No IFs have been identified. 7/133 participants (5.3%) consented to not receive IFs. There were not statistically significant differences between those consenting to receive IFs or not in terms of gender (male 50.8% vs 57.1%, p=0.73), median age (39.42yrs vs 45.62yrs, p=0.52), being personally affected by the inherited kidney disease of interest (46vs57%, p=0.53), consanguinity (18% vs 0%, p=0.43), relationship to affected family member/s (p=0.24-0.37), or the specialty of the consenting clinician (p=0.19-0.58)

There was however, a statistically significant difference towards consenting to not receive IFs amongst those with a family history of another non-renal potentially inheritable disorder (57.1% vs 8.7%, RR6.55, p<0.0001) and if the inherited kidney disease of interest had proposed autosomal dominant inheritance (71.4% vs 30.2%, RR2.37, p<0.0001).

Conclusions: The majority of Australian research participants are likely to consent to receive potential IFs. All genetic study participants should be provided with genetic counselling and informed consent prior to participation. Several circumstances may impact upon a participant’s consenting choices.

WHAT A PATIENT WANTS: A CONSUMER PERSPECTIVE OF KIDNEY SUPPORTIVE CARE

L PURTELL1,2,3, I BERQUIER2, C DOUGLAS4, B TAYLOR2, K KRAMER4, D HEFFERNAN2, W HOY3,5, A BONNER1,2,3, H HEALY2,3,6

1 School of Nursing, Faculty of Health, Queensland University of Technology, Brisbane, QLD; 2Kidney Health Service, Metro North Hospital and Health Service, Queensland Health; 3NHMRC Chronic Kidney Disease Centre of Research Excellence, Brisbane, QLD; 4Palliative and Supportive Care, Royal Brisbane and Women’s Hospital, Brisbane, QLD; 5Centre for Chronic Disease, Faculty of Health, University of Queensland, Brisbane, QLD; 6Kidney Research Laboratory, Queensland Institute of Medical Research

Aim: To evaluate benefits patients and carers derive from a kidney supportive care (KSC) program, integrating renal and palliative medicine.

Background: Patient and carer perspectives are vital for developing healthcare strategies that are equitable, accessible, effective and patient-centred. This is especially important in the context of end-stage kidney disease (ESKD), where treatment options can be extremely burdensome while, in many cases, providing little long-term benefit. KSC is emerging as an effective way to care for patients with ESKD—whether on dialysis or not—who need help with symptom management, advance care planning and/or complex decision-making around dialysis options.

Methods: Patient and carer satisfaction with a new KSC program in the north of Brisbane and symptom scores were assessed using self-reported questionnaires. Place of death data were collected from medical records. To obtain detailed information about patient and carer perceptions of the program and their healthcare needs, semi-structured interviews based on the Consolidated Framework for Implementation Research were conducted with 10 patients and 5 carers receiving KSC.

Results: KSC patients and carers were highly satisfied with the program (96% and 91% satisfaction, respectively). Reasons for this included feeling supported, having enough time for detailed discussions and the program’s focus on wellbeing rather than biochemical markers. Patients and carers reported that they valued receiving care that they perceived to be tailored to them and their circumstances. Overall symptom burden decreased in 69% of those who had attended >1 KSC visit. Among patients who died, 75% died in their preferred final place of care.

Conclusions: Patients and carers receiving KSC derived benefits including improved symptom control and self-determination, and valued the quality of care they received.

BLOOD PRESSURE MANAGEMENT IN HYPERTENSIVE PATIENTS WITH NON-DIALYSIS CHRONIC KIDNEY DISEASE IN QUEENSLAND, AUSTRALIA

J ZHANG1,2, Z WANG1,2, O ADEGBIJA1,2, R ABEYSEKERA1,3, HG HEALY1,3, KS TAN1,4 , SK VENUTHURUPALLI1,2,5 , A CAMERON1,2, WE HOY1,2

1NHMRC CKD.CRE and CKD.QLD, Brisbane, Queensland; 2Faculty of Medicine, UQCCR, University of Queensland, Brisbane, Queensland; 3Kidney Health Service (RBWH); Metro North Hospital and Health Service, Brisbane, Queensland; 4Renal Services (Logan), Metro South Hospital and Health Service, Brisbane, Queensland;5Renal Services (Toowoomba Hospital), Darling Downs Hospital and Health Service, Queensland

Aim: To describe rates of blood pressure control and associated factors, and medication use in hypertensive patients with non-dialysis chronic kidney disease (CKD) in selected Australian settings.

Background: Hypertension is the most significant risk factor for the development and progression of CKD. Lowering blood pressure is a major treatment goal.

Methods: In a collaborative study with the iNet-CKD consortium, we identified patients from three public renal practices in CKD.QLD, who had CKD stage 3A to 5, and had hypertension (a formal diagnosis and/or use of antihypertensive agents). We describe the proportions of controlled blood pressure (<140/90 mmHg), demographic and clinical characteristics and use of antihypertensive medications on recruitment to the registry.

Results: Of 1,750 participants, 61.7% had controlled blood pressure, and 95.7% were on antihypertensive medications with 23%, 29%, 27% and 17% on 1, 2, 3, and ≥4 classes of antihypertensive medications respectively. Treatment included renin-angiotensin system blockers in 71%. Patients on a single antihypertensive medication had the highest rates of hypertension control (67.7%). Hypertension was more often uncontrolled among people with mild and severe albuminuria/proteinuria with adjusted prevalence ratios of 1.27 (95%CI 1.06-1.52) and 1.61 (1.36-1.91) respectively, and in people who were older (≥65 years), 1.2(1.04-1.38). In contrast, people with cardiovascular disease (CVD) were less likely to have uncontrolled blood pressure: 0.77 (0.68-0.87). The associations with albuminuria/proteinuria and with age applied to most programs in iNet-CKD; and the CVD findings applied for the programs in Canada, the UK and Uruguay.

Conclusions: Despite the high usage of medication to treat hypertension in these CKD.QLD patients, the blood pressure goal was met on a single occasion in around 60%. Longitudinal data are needed for future study.

THE DIALYSIS MODELS OF CARE PARTNERSHIP: LINKING HOSPITAL ADMINISTRATIVE AND ANZDATA REGISTRY DATA FOR NORTHERN TERRITORY (NT) RENAL REPLACEMENT THERAPY (RRT) RECIPIENTS

AMS AHMED1, PD LAWTON1, G GORHAM1, M CHATFIELD1, A CASS1

1Renal Unit, Wellbeing & Preventable Chronic Diseases Division, Menzies School of Health Research, Darwin, Northern Territory, Australia

Aim: To compare patient numbers, key date, modality and comorbidity recording between the ANZDATA Registry and NT public hospitals Admitted Patient Care (APC) datasets for NT RRT patients.

Background: With calls from patient and advocacy groups in the NT for treatment closer to home, there is a need to explore various treatment models’ effectiveness and sustainability in remote Australia. The Dialysis Models of Care (DxMOC) Partnership is a cross-organisational, mixed methods study, examining the patient experiences, outcomes and whole-of-government cost of different modalities and models of care for patients receiving RRT in the NT.

Methods: Previously validated ICD-9 and ICD-10AM codes (from 1 July 1998) were used to identify individuals receiving RRT from NT APC data, and linked to ANZDATA Registry data for NT patients to create a cohort of all prevalent patients who received maintenance RRT in the NT between 01/01/2000 to 31/12/2014 inclusive.

Results:  2,375 patients were identified in either dataset having received RRT in the NT. Of 993 patients in APC data but not in ANZDATA, 133 had no identifiable reason for not appearing in ANZDATA. 22 were in ANZDATA but not in APC data. 1,360 patients were matched in both datasets; To examine variation between datasets of dates and diagnosis codes, 1,142 matched participants (starting RRT from 1 July 1998) were selected.  There was RRT start date variation (>±90 days) in 11.3% (129/1142) participants. Diabetes had substantial agreement (84.9%, kappa=0.65), coronary artery disease fair agreement (72.6%, kappa=0.29) and other comorbidities slight agreements.

Conclusions: Although variation exists between NT APC and ANZDATA in patient numbers, RRT start date and diagnosis codes, the linked datasets allow more detailed analysis than either alone.

CHRONIC KIDNEY DISEASE (CKD) MONITORING IN AUSTRALIAN GENERAL PRACTICE

MA KHANAM1, J RADFORD2, R CASTELINO2, MD JOSE2, A KITSOS2, J STANKOVICH2, ST ZAIDI2, L KINSMAN1, GM PETERSON2,3

1School of Health Sciences, University of Tasmania; 2School of Medicine, University of Tasmania, 3Faculty of Health, University of Tasmania

Aim: To describe aspects of monitoring amongst chronic kidney disease (CKD) patients within Australian general practice.

Background: Appropriate management of CKD in primary care is essential to reduce morbidity and mortality. We aim to describe patterns of monitoring in CKD using MedicineInsight data.  MedicineInsight is a primary care quality improvement initiative from NPS MedicineWise, collecting de-identified patient information from 557 participating general practices to create a longitudinal database of over 3.5 million Australians.

Methods:  Data collected between 01/01/2013 to 01/06/2016 was used for this analysis.  We have analysed clinical and laboratory assessments for stage-3 CKD only, comprising blood pressure, urine ACR/albuminuria, serum lipids, and biochemical profile including urea, creatinine and electrolytes; and HbA1c in the presence of co-morbid diabetes. The recommendations for monitoring these parameters are at least once for CKD stage-3a and twice for CKD stage-3b, or as required, per year. We have included assessments conducted at least once in the study period.

Results: Data with two or more eGFR results <60ml/min/1.73m2, at least 90 days apart were available for 61,102 patients. The number of patients in stage-3 CKD was 42,524. Blood pressure was recorded for 95.9%, tests for albuminuria for 46.5%, serum lipids 51.0%; urea, creatinine and electrolytes were done for 98.6%, 99.1%, and 60.6%, respectively. The total number of CKD stage-3 patients with co-morbid diabetes was 12,591, of whom 99.9% had been tested for HbA1c.

Conclusions: Measurements of albuminuria, used to finesse the staging of CKD, were conducted in less than half of the patients. There appears to be room for improvement in the monitoring of CKD stage-3 patients.

PATIENT PREFERENCES FOR DIALYSIS MODALITIES: A DISCRETE-CHOICE EXPERIMENT

R WALKER1,2, R MORTON3, S PALMER4,5, M MARSHALL6, A TONG1, K HOWARD1

1Sydney School of Public Health, The University of Sydney, Australia; 2Hawke’s Bay District Health Board, Hawke’s Bay, New Zealand; 3NHMRC Clinical Trials Centre, University of Sydney, Sydney; 4Department of Nephrology, Christchurch Hospital, Christchurch, New Zealand; 5Department of Medicine, University of Otago Christchurch, 8140, New Zealand; 6Baxter Healthcare, (Asia- Pacific), Shanghai, China.

Aim: To quantify the attributes of dialysis care and the trade-offs that patients consider when making decisions about dialysis modalities.

Background: Improved knowledge about factors that influence patient choice when considering dialysis modalities could inform healthcare interventions that increase rates of home dialysis.

Methods: We conducted a prospective, labelled, discrete choice experiment survey with random parameter logit analysis to quantify preferences and trade-offs for attributes of dialysis treatment including; schedule flexibility, patient out-of-pocket costs, subsidized transport services, level of nursing support, life expectancy, dialysis training time, well-being on dialysis, and dialysis schedule (frequency and duration). We reported outcomes using β coefficients with corresponding odds ratios and 95% confidence intervals for choosing home-based dialysis (peritoneal dialysis or haemodialysis) compared to facility haemodialysis.

Results: Home-based therapies were preferred with the following attributes: survival (OR per year increase 1.63, CI 1.25-2.12); increased treatment flexibility (OR 9.22, CI 2.71-31.3); improved well-being (OR 210, CI 15.0-2489), and more nursing support (OR 87.3, CI 3.78-2014). Respondents were willing to accept additional costs of NZ$400 (95% CI, $333-465) to receive increased nursing support. Patients were willing to accept costs of NZ$223 per month (95% CI, $195-251) for greater treatment flexibility. Socio-demographics such as age, ethnicity and household income influenced patient choice.

Conclusions: Patients preferred home dialysis over facility-based care when increased nursing support was available, and when improved survival, well-being and treatment flexibility were expected. Models of care that increase attributes associated with greater acceptability of home dialysis may support patients to choose home dialysis.

DECISION-MAKING ACROSS THE CKD TRAJECTORY: A QUALITATIVE INTERVIEW STUDY WITH CALD PATIENTS

D MUSCAT1, R KANAGARATNAM1, H SHEPHERD1, K SUD2-4, K MCCAFFERY1, A WEBSTER1,4

1University of Sydney, School of Public Health, New South Wales, Australia; 2University of Sydney, Sydney Medical School, New South Wales, Australia; 3Nepean Hospital, Department of Renal Medicine, New South Wales, Australia; 4Westmead Hospital, Centre for Transplant and Renal Research,  New South Wales, Australia

Background: Patients from culturally and linguistically diverse (CALD) backgrounds experience higher prevalence of chronic kidney disease (CKD) with a more rapid progression to dialysis. However, they are less likely to engage in decision-making about their health, with few interventions to support them to do so.

Aims: To explore the experience of decision-making throughout the CKD trajectory among CALD patients with Stage 5 CKD who are currently receiving haemodialysis, with a focus on core value influences on medical decision-making processes.

Methods: Semi-structured interviews were conducted with CALD patients at haemodialysis units in Western Sydney, Australia. Purposive sampling was used to target Arabic-speakers and English-speakers from the Indian subcontinent and Pacific Islands. Interviews were audio-recorded, transcribed, and analysed using Framework Analysis.

Results: Interviews were conducted with 26 participants (74% participation) between January and April, 2017. Many participants indicated that they wanted to be informed about their health and participate in decision-making. However they felt constrained by perceptions of power imbalance in the physician-patient dyad and experienced difficulty understanding a set of questions to support shared decision-making (SDM). Participants reported using more passive decision-making styles and feeling disconnected with the decision-making process “we weren’t given a choice…” [NIHU01].

Family and religion emerged as central to participants’ cultural identity and influenced their perceptions of health and decision-making. Participants reinforced community interdependence citing religious institutions as a support network and faith as a source of strength during illness.

Conclusions: Interview findings demonstrate the need for targeted and tailored SDM interventions that simultaneously acknowledge and address culturally-specific barriers and promote patient participation in line with patient preferences.

RENAL SUPPORTIVE CARE: CURRENT EXPERIENCES IN VICTORIA

K DUCHARLET1, J PHILIP2,3, J WEIL2, N BARRACLOUGH4, C SOMERVILLE5, P MCCLELLAND6, J BEAVIS7, H GOCK1,3

1Department of Nephrology, St Vincent’s Hospital, Melbourne, Victoria; 2Palliative Service, St Vincent’s Hospital, Melbourne, Victoria; 3Department of Medicine, Melbourne University, Melbourne, Victoria; 4 Department of Medicine, South West Healthcare, Warrnambool, Victoria; 5Department of Nephrology, Barwon Health, Geelong, Victoria; 6Department of Medicine, Goulburn Valley Health, Shepparton, Victoria; 7Department of Nephrology, Royal Melbourne Hospital, Parkville, Victoria

Background: Patients with advanced Chronic Kidney Disease (CKD) have a high burden of physical and psychosocial morbidity, frequently associated with frailty and limited prognosis.  Renal Supportive Care (RSC) is increasingly recognised as a valid non-dialysis, non-transplantation pathway for many of these patients.  However, understanding the role, timing and application of RSC amongst healthcare providers is not known.

Aim: To explore current attitudes and experiences of RSC and Palliative Care by renal clinicians.

Methods: An exploratory qualitative study was conducted across 5 Victorian hospitals. Focus groups and semi-structured interviews of renal clinicians were audio recorded and transcribed for thematic analysis by two independent researchers.

Results: Of participants recruited (n=58), there were 35 nurses (3 practitioners, 2 educators, 5 ward, 25 dialysis) and 23 doctors (5 nephrology trainees, 18 nephrologists). Clinical experience ranged from 0.5-40 years.

Four major themes emerged on preliminary analysis:

1) Perceptions and practices of RSC vary substantially. However, RSC is perceived more acceptable for patients than Palliative Care.

2) Compared with dialysis, non-dialysis patients have a poorly defined pathway of care that is not well resourced.

3) Both dialysis and non-dialysis CKD patients have few, readily identified transition points to herald the final phase-of-life.  Therefore, its recognition is inconsistent.

4) At end-of-life, patients, families and treating teams frequently have differing views on active management, continuation of life-supporting therapy and only providing comfort measures.

Conclusions: The perception and understanding of RSC varies widely.  RSC may improve care for some patients but a consistent approach is lacking. There is a need for a consensus RSC pathway and resources may be required for service development and health service integration.

DECISION-MAKING AMONG CALD ADULTS WITH CHRONIC DISEASE: A SYSTEMATIC REVIEW OF BARRIERS, FACILITATORS, AND INTERVENTIONS

D MUSCAT1, R KANAGARATNAM1, H SHEPHERD1, K SUD2-4, K MCCAFFERY1, A WEBSTER1,4

1 University of Sydney, School of Public Health, New South Wales, Australia; 2 University of Sydney, Sydney Medical School, New South Wales, Australia; 3 Nepean Hospital, Department of Renal Medicine, New South Wales, Australia; 4 Westmead Hospital, Centre for Transplant and Renal Research,  New South Wales, Australia

Background: For adults with chronic kidney disease (CKD), a shared approach to healthcare decision-making is advocated as the ideal model, given that it can improve patient outcomes. Culturally- and linguistically-diverse (CALD) adults are less likely than others to engage in decision-making.

Aims: To understand the barriers and facilitators of shared decision-making (SDM) for CALD adults with chronic health conditions and explore how existing interventions and cultural frameworks can be adapted for CKD populations.

Methods: Systematic literature review conducted on 30th November 2016 using MedLine, PubMed, Embase, Cochrane Central Register of Controlled Trials, CINAHL, Informit Online and PsycInfo. Duplicates were removed and articles screened for exclusion criteria (population and study type). Articles discussing barriers and facilitators to healthcare engagement for CALD groups or frameworks for greater cultural competency were eligible for inclusion, as were articles reporting interventions to improve SDM in the context of related chronic diseases (e.g. diabetes; cardiovascular disease). Findings were synthesised thematically.

Results: 1668 articles were located and screened. Of those included, most focussed on one of 5 CALD populations (African American, Mexican, Hispanic, South Asian, Chinese). Within CALD patient–provider interactions, barriers to SDM included language fluency and provider biases (e.g. assuming patient preferences based on culture). CALD patients often used their community as a knowledge source and culturally-specific health beliefs influenced decisions to seek care and treatment. Mistrust due to cultural discordance limited information exchange within encounters. Across disease contexts, few interventions existed to support CALD populations to participate in decision-making.

Conclusions: Although CALD groups experience barriers to SDM, few interventions exist to address these. Research has been confined to a limited number of cultural groups, with little work in CKD.

MORTALITY OUTCOMES FOR MĀORI AND NON-MĀORI AFTER COMMENCING RENAL REPLACMENT THERAPY IN AOTEAROA/NEW ZEALAND: A KAUPAPA MĀORI APPROACH

T HURIA,1 S PALMER2, L BECKERT2, J WILLIMAN,3 S PITAMA1

1Māori and Indigenous Health Institute, University of Otago Christchurch, New Zealand; 2Department of Medicine, University of Otago Christchurch, New Zealand; 3Department of Population Health, University of Otago Christchurch

Aim:  To utilise indigenous approaches to explore disparities for Māori with end-stage kidney disease (ESKD).

Background: Inequitable health outcomes for indigenous peoples with ESKD persist despite considerable research and policy efforts.

Methods: We employed a kaupapa Māori approach in the conduct of a propensity score matched cohort analysis of mortality after commencement of renal replacement therapy. We included all adults commencing renal replacement therapy in Aotearoa/New Zealand (1/1/2002-31/12/2011) from the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA) linked to the New Zealand National Health Index.

Results: 1459 Māori and 3312 non-Māori were included. Non- Māori were older, had a lower BMI and were less likely to have smoked or have diabetes. Non-Māori were more likely to utilise peritoneal dialysis and kidney transplantation. Non-Māori were less likely to be referred late to specialist services or start dialysis with a vascular catheter.  Non-Māori were more likely to live in an urban setting and had markedly less socioeconomic deprivation. Propensity-score matching assembled Māori and non-Māori cohorts with similar clinical and sociodemographic characteristics. Despite matching, Māori were more likely to commence dialysis with a venous catheter (standardized difference 0.35) and live in a rural location (0.50). Within age standardised populations, the crude fatality rate ratio for Māori compared with New Zealand European patients at 5 years was 14.1 (95% CI 4.2-47.3) during 2002-2006 and 10.3 (3.5-30.0) in 2007-2011.

Conclusions: Non-Māori experienced markedly lower mortality rates than Māori during dialysis therapy even when socioeconomic and clinical factors were equivalent. Health services and policies that insufficiently consider indigenous status as a marker of adverse outcomes, independent of social and clinical indicators, may not effectively address disparities in Aotearoa/New Zealand.

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