Dataset Information

My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.

ABSTRACT:

Background

Australian healthcare quality and safety accreditation standards recommend health services partner with health care users, to ensure the highest quality of care. Aboriginal Australians with chronic and end stage kidney disease have high health care access needs.

Aim

To describe the experiences of health care users of a large government kidney healthcare service provider.

Methods

Within a government renal health service in the Top-End of the Northern Territory, we undertook a qualitative study involving in-depth interviews with 26 adult clients from urban, regional and remote settings who were living with kidney health conditions.

Results

Client characteristics included a mean age of 55 years, 55% female and 81% identifying as Aboriginal. The kidney related conditions of client participants included CKD (11, 42.3%), haemodialysis (12, 46.2%), peritoneal dialysis (1, 3.9%), and transplant (2, 7.7%). Key themes emerging from patient interviews related to perceived gaps for clients and carers including: 1) knowledge gaps about the health condition, 2) the impact of relocation in order to access centrally-based renal care, 3) healthcare staff professionalism and qualities and 4) service environments. Overall, the experiences centred on a greater need for client-centred, respectful and culturally based healthcare support. Clients recommended the need for patient-led collective care, including sustaining an Indigenous Patient Reference Group to support ongoing healthcare service decision processes. Participants included in almost equal proportion, clients with CKD (without dialysis) and clients utilising renal replacement therapy, which adds significant weight to the client-identified recommendations for highest quality of kidney care across a wide spectrum of kidney function.

Conclusion

Four major themes identified by clients related to their experience with renal care provided by this major regional health care provider: knowledge gaps of their own condition, the lived impacts of relocating to access health care, service environments, and Health Care Provider Quality. An Indigenous Patient Reference Group was one mechanism recommended to support the co-design of preferred care models.

SUBMITTER: Hughes JT

PROVIDER: S-EPMC6922340 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.

Hughes Jaquelyne T JT Freeman Natasha N Beaton Barbara B Puruntatemeri Anne-Marie AM Hausin Monica M Tipiloura Gerarda G Wood Pamela P Signal Selina S Majoni Sandawana W SW Cass Alan A Maple-Brown Louise J LJ Kirkham Renae R

PloS one 20191219 12

<h4>Background</h4>Australian healthcare quality and safety accreditation standards recommend health services partner with health care users, to ensure the highest quality of care. Aboriginal Australians with chronic and end stage kidney disease have high health care access needs.<h4>Aim</h4>To describe the experiences of health care users of a large government kidney healthcare service provider.<h4>Methods</h4>Within a government renal health service in the Top-End of the Northern Territory, we ...[more]

PMID: 31856215

Similar Datasets

Project description:BackgroundCompared with other kidney replacement therapies, preemptive kidney transplantation (KT) provides better clinical outcomes, reduces mortality, and improves the quality of life of patients with end-stage kidney disease (ESKD). However, evidence related to the cost-effectiveness of preemptive living-related KT (LRKT) is limited, especially in low- and middle-income countries, such as Thailand. This study compared the cost-effectiveness of LRKT with those of non-preemptive KT strategies.MethodsCost and clinical data were obtained from adult patients who underwent KT at Siriraj Hospital, Mahidol University, Thailand. A decision tree and Markov model were used to evaluate and compare the lifetime costs and health-related outcomes of LRKT with those of 2 KT strategies: non-preemptive LRKT and non-preemptive deceased donor KT (DDKT). The model's input parameters were sourced from the hospital's database and a systematic review. The primary outcome was incremental cost-effectiveness ratios (ICERs). Costs are reported in 2020 United States dollars (USD). One-way and probabilistic sensitivity analyses were performed.ResultsOf 140 enrolled KT patients, 40 were preemptive LRKT recipients, 50 were non-preemptive LRKT recipients, and the rest were DDKT recipients. There were no significant differences in the baseline demographic data, complications, or rejection rates of the three groups of patients. The average costs per life year gained were $10,647 (preemptive LRKT), $11,708 (non-preemptive LRKT), and $11,486 (DDKT). The QALY gained of the preemptive option was 0.47 compared with the non-preemptive strategies. Preemptive LRKT was the best-buy strategy. The sensitivity analyses indicated that the model was robust. Within all varied ranges of parameters, preemptive LRKT remained cost-saving. The probability of preemptive LRKT being cost-saving was 79.4%. Compared with non-preemptive DDKT, non-preemptive LRKT was not cost-effective at the current Thai willingness-to-pay threshold of $5113/QALY gained.ConclusionsPreemptive LRKT is a cost-saving strategy compared with non-preemptive KT strategies. Our findings should be considered during evidence-based policy development to promote preemptive LRKT among adults with ESKD in Thailand.

Project description:BackgroundLinked to extreme rates of chronic heart and kidney disease, pyoderma is endemic amongst Aboriginal children in Australia's Northern Territory (NT). Many of those with pyoderma will also have scabies. We report the results of a community-based collaboration within the East Arnhem Region, which aimed to reduce the prevalence of both skin infections in Aboriginal children.Methodology/principal findingsCommencing September 2004, we conducted an ecological study that included active surveillance for skin infections amongst children aged <15 years in five remote East Arnhem communities over a three year period. Screening was undertaken by trained local community workers, usually accompanied by another project team member, using a standard data collection form. Skin infections were diagnosed clinically with the aid of a pictorial flip chart developed for the purpose. Topical 5% permethrin was provided for age-eligible children and all household contacts whenever scabies was diagnosed, whilst those with pyoderma were referred to the clinic for treatment in accordance with current guidelines. In addition, annual mass scabies treatment (5% permethrin cream) was offered to all community residents in accordance with current guidelines but was not directly observed. Pyoderma and scabies prevalence per month was determined from 6038 skin assessments conducted on 2329 children. Pyoderma prevalence dropped from 46.7% at baseline to a median of 32.4% (IQR 28.9%-41.0%) during the follow-up period - an absolute reduction of 14.7% (IQR 4.7%-16.8%). Compared to the first 18 months of observation, there was an absolute reduction in pyoderma prevalence of 18 cases per 100 children (95%CI -21.0, -16.1, p</=0.001) over the last 18 months. Treatment uptake increased over the same period (absolute difference 13.4%, 95%CI 3.3, 23.6). While scabies prevalence was unchanged, the prevalence of infected scabies (that is with superimposed pyoderma) decreased from 3.7% (95%CI 2.4, 4.9) to 1.5% (95%CI 0.7, 2.2), a relative reduction of 59%.ConclusionAlthough pyoderma prevalence remained unacceptably high, there was a substantial reduction overall with improvements in treatment uptake a critical factor. More acceptable alternatives, such as cotrimoxazole for pyoderma and ivermectin as a community-wide scabicide, warrant further investigation in these settings. We are encouraged by progress made through this work, where local action was led by local community members and primary health care providers with external training and support.Trial registrationClinicalTrials.gov NCT00884728.

Project description:Introduction:Originally piloted as a multi-departmental project within the Government of South Australia, SA NT DataLink is now the key provider of data linkage services in South Australia, the Northern Territory of Australia and the Commonwealth of Australia, enabling academics and policy makers to undertake research, policy, planning and evaluation. Approach:Uniquely governed by a broad range of consortium partners, SA NT DataLink's business model operates with flexibility to adapt to researcher priorities and government requirements. Its Data Linkage Unit routinely links data from over 50 sources with more than 57 million records on approximately 2.9 million individuals. It arguably provides the broadest range of linked data sources in Australia, focusing on administrative datasets and clinical registries from various health and human services domains. Operating in strict adherence with the separation principal, SA NT DataLink's Data Integration Unit separately manages anonymised clinical and service use data in collaboration with the respective data custodians through the Custodian Controlled Data Repository, allowing approved analysts to efficiently access high quality linked anonymised data. To protect individual privacy throughout the process of data linkage and data provision, SA NT DataLink's processes align with state, territory and federal privacy legislations. Operating consistently with National Health and Medical Research Council guidelines, linkage projects are subject to approvals by the relevant data custodians and approved Human Research Ethics Committees. Noteworthy Outputs:SA NT DataLink has provided linkage services to over 160 data linkage projects, informing nationally significant research and policy initiatives, including initiatives to improve indigenous children's hearing and child development. Conclusion:To respond to a changing data linkage landscape, SA NT DataLink is continuously reviewing and improving its systems, linkage processes and governance, addressing administrative, funding, data access, social licence and data linkage challenges and opportunities to meet increasing demand and new business developments.

Dataset Information

My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.

Background

Aim

Methods

Results

Conclusion

Publications

My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets