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  1. Article ; Online: Kidney Clinicians' Perceptions of Challenges and Aspirations to Improve End-Of-Life Care Provision.

    Ducharlet, Kathryn / Weil, Jennifer / Gock, Hilton / Philip, Jennifer

    Kidney international reports

    2023  Volume 8, Issue 8, Page(s) 1627–1637

    Abstract: Introduction: End-of-life care is an essential part of integrated kidney care. However, renal clinicians' experiences of care provision and perceptions of end-of-life care needs are limited. This study explored renal clinicians' experiences of providing ...

    Abstract Introduction: End-of-life care is an essential part of integrated kidney care. However, renal clinicians' experiences of care provision and perceptions of end-of-life care needs are limited. This study explored renal clinicians' experiences of providing end-of-life care and developed recommendations to improve experiences.
    Methods: An exploratory qualitative study using semistructured focus groups and 1 interview was undertaken at 5 kidney services in Victoria, Australia. The transcripts were analyzed thematically.
    Results: Between February and December 2017, 54 renal clinicians (21 doctors and 33 nurses) participated in the study. Clinicians reported multiple challenges of end-of-life care experiences resulting in compromised treatment planning and decision making and highlighted priorities to guide better care experiences. Challenges of providing end-of-life care were underpinned by mismatches in illness and treatment expectations, limited engagement in advance care planning, medical complexity, and differences between clinicians and patients in what constituted quality of life. These challenges were associated with compromised end-of-life care planning, which resulted in care experiences that were rushed with a prolonged treatment focus, risking limited preparation for death and moral distress. Clinicians aspired for positive end-of-life care experiences, including patient control and consensus in decision making, and a coordinated and collaborative approach across healthcare providers.
    Conclusions: Renal clinicians highlighted multiple factors and circumstances which resulted in experiences of compromised end-of-life care for patients with kidney disease. To improve care experiences, clinician-directed priorities included more training and support to facilitate systematic and earlier discussions about illness expectations and end-of-life care planning and greater communication and collaboration across healthcare providers is required.
    Language English
    Publishing date 2023-06-08
    Publishing country United States
    Document type Journal Article
    ISSN 2468-0249
    ISSN (online) 2468-0249
    DOI 10.1016/j.ekir.2023.04.031
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: How Do Kidney Disease Clinicians View Kidney Supportive Care and Palliative Care? A Qualitative Study.

    Ducharlet, Kathryn / Weil, Jennifer / Gock, Hilton / Philip, Jennifer

    American journal of kidney diseases : the official journal of the National Kidney Foundation

    2022  Volume 81, Issue 5, Page(s) 583–590.e1

    Abstract: Rationale & objective: Kidney supportive care (KSC) is a developing area in medicine that integrates the expertise of kidney and palliative care practitioners to improve symptoms and quality of life for people with advanced kidney disease. The ... ...

    Abstract Rationale & objective: Kidney supportive care (KSC) is a developing area in medicine that integrates the expertise of kidney and palliative care practitioners to improve symptoms and quality of life for people with advanced kidney disease. The intersection of the practical aspects of KSC (including care activities and clinical referrals) with palliative and end-of-life care (EOLC) are largely unknown. The aim of this study was to explore kidney disease clinicians' experiences of KSC, palliative care, and EOLC.
    Study design: An exploratory qualitative study using semistructured focus groups.
    Setting & participants: Kidney disease clinicians (18 physicians, 3 trainees, and 33 kidney disease nurses) from 5 public hospitals were recruited across Victoria, Australia.
    Analytical approach: Thematic analysis of focus group transcripts.
    Results: The 2 overarching themes highlighted by clinicians were their perception that their health care systems insufficiently addressed the needs of people with advanced kidney disease, as well as their aspirations to develop KSC services to improve health care experiences. Three subthemes were identified related to limitations in health care systems: (1) variation in the clinical scope of KSC, (2) limited integration of palliative care, and (3) experiences of challenging and compromised provision of EOLC. The second theme described aspirations for future KSC services to be more inclusive, seamless, and collaborative across health care providers with capacity to respond to meet changing palliative care needs.
    Limitations: Findings may not be transferable to contexts outside of Victoria, Australia; data were collected in 2017-2018 and may not reflect current or future experiences.
    Conclusions: Kidney clinicians described systemic challenges and compromises in care experiences and the need for development of KSC services. They expressed that this development would require a consistent and systematic approach that integrates palliative care and embeds KSC as part of kidney health service delivery.
    MeSH term(s) Humans ; Palliative Care ; Quality of Life ; Terminal Care ; Qualitative Research ; Kidney Diseases ; Kidney
    Language English
    Publishing date 2022-12-21
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 604539-x
    ISSN 1523-6838 ; 0272-6386
    ISSN (online) 1523-6838
    ISSN 0272-6386
    DOI 10.1053/j.ajkd.2022.10.018
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Referral Criteria to Specialist Palliative Care for People with Advanced Chronic Kidney Disease: A Systematic Review.

    Collins, Anna / Hui, David / Davison, Sara N / Ducharlet, Kathryn / Murtagh, Fliss / Chang, Yuchieh Kathryn / Philip, Jennifer

    Journal of pain and symptom management

    2023  Volume 66, Issue 5, Page(s) 541–550.e1

    Abstract: Context: People with advanced chronic kidney disease (CKD) have significant morbidity, yet for many, access to palliative care occurs late, if at all.: Objectives: This study sought to examine criteria for referral to specialist palliative care for ... ...

    Abstract Context: People with advanced chronic kidney disease (CKD) have significant morbidity, yet for many, access to palliative care occurs late, if at all.
    Objectives: This study sought to examine criteria for referral to specialist palliative care for adults with advanced CKD with a view to improving use of these essential services.
    Methods: Systematic review of studies detailing referral criteria to palliative care in advanced CKD conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) guideline and registered (PROSPERO: CRD42021230751).
    Data sources: Electronic databases (Ovid, MEDLINE, Ovid Embase, and PubMed) were used to identify potential studies, which were subjected to double review, data extraction, thematic coding, and descriptive analyses.
    Results: Searches yielded 650 unique titles ultimately resulting in 56 studies addressing referral criteria to specialist palliative care in advanced CKD. Of 10 categories of referral criteria, most commonly discussed were: Critical times of treatment decision making (n = 23, 41%); physical or emotional symptoms (n = 22, 39%); limited prognosis (n = 18, 32%); patient age and comorbidities (n = 18, 32%); category of CKD/ biochemical criteria (n = 13, 23%); functional decline (n = 13, 23); psychosocial needs (n = 9, 16%); future care planning (n = 9, 16%); anticipated decline in illness course (n = 8, 14%); and hospital use (n = 8, 14%).
    Conclusion: Clinicians consider referral to specialist palliative care for a wide range of reasons, with many related to care needs. As palliative care continues to integrate with nephrology, our findings represent a key step towards developing consensus criteria to standardize referral for patients with chronic kidney diseases.
    Language English
    Publishing date 2023-07-26
    Publishing country United States
    Document type Journal Article
    ZDB-ID 639142-4
    ISSN 1873-6513 ; 0885-3924
    ISSN (online) 1873-6513
    ISSN 0885-3924
    DOI 10.1016/j.jpainsymman.2023.07.013
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Renal supportive care, palliative care and end-of-life care: Perceptions of similarities, differences and challenges across Australia and New Zealand.

    Ducharlet, Kathryn / Philip, Jennifer / Kiburg, Katerina / Gock, Hilton

    Nephrology (Carlton, Vic.)

    2020  Volume 26, Issue 1, Page(s) 15–22

    Abstract: Renal supportive care (RSC) is an approach integrating nephrology and palliative care to improve quality of life for people with chronic kidney disease (CKD). RSC practice varies across services; therefore, understanding clinicians' perspectives is ... ...

    Abstract Renal supportive care (RSC) is an approach integrating nephrology and palliative care to improve quality of life for people with chronic kidney disease (CKD). RSC practice varies across services; therefore, understanding clinicians' perspectives is important to the evolution and definition of RSC.
    Aim: To understand renal clinicians' views and experiences of RSC, palliative care and end-of-life care.
    Method: A cross-sectional online survey was undertaken across Australia and New Zealand between February and May 2018. Participants were asked about end-of-life care, RSC, palliative care and an ideal model of RSC.
    Results: Estimated response rate 13% included 382 clinicians; doctors (32%), nurses (68%); of whom 84% access specialist palliative care and 59% RSC. A lack of agreed treatment goals (86%) and late or rushed treatment decision making (85%) was associated with challenging end-of-life experiences. Variable concepts of RSC were described, with RSC being considered the same as: usual care for all CKD patients (40%), conservative (30%) or palliative care (22%). The term RSC was generally distinct from (77%) and more acceptable than palliative care (80%) with preferential RSC referral for symptoms (86% vs 69%, P < .01) and complex treatment decision making (82% vs 58%, P < .01). Aspirations for RSC included improving symptoms and quality of life (89%), with an ideal model comprising: symptom management (98%), improved nephrology and community service integration (96%) and clinician education (94%).
    Conclusion: This study revealed challenges for renal clinicians in providing end-of-life care and variation of views and experiences of RSC. It represents opportunities to develop RSC aligned with clinician priorities to improve patient care.
    MeSH term(s) Australia/epidemiology ; Cross-Sectional Studies ; Humans ; Models, Organizational ; Needs Assessment ; Nephrology/education ; Nephrology/methods ; New Zealand/epidemiology ; Palliative Care/methods ; Palliative Care/statistics & numerical data ; Practice Patterns, Physicians'/statistics & numerical data ; Quality Improvement ; Quality of Life ; Renal Insufficiency, Chronic/epidemiology ; Renal Insufficiency, Chronic/psychology ; Renal Insufficiency, Chronic/therapy ; Terminal Care/organization & administration ; Terminal Care/standards
    Language English
    Publishing date 2020-10-21
    Publishing country Australia
    Document type Journal Article
    ZDB-ID 1303661-0
    ISSN 1440-1797 ; 1320-5358
    ISSN (online) 1440-1797
    ISSN 1320-5358
    DOI 10.1111/nep.13787
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Author reply.

    Gunasekaran, Bharathy / Scott, Caroline / Ducharlet, Kathryn / Marco, David / Weil, Jennifer

    Internal medicine journal

    2019  Volume 49, Issue 8, Page(s) 1056–1057

    MeSH term(s) Death ; Humans ; Patients
    Language English
    Publishing date 2019-08-06
    Publishing country Australia
    Document type Letter ; Comment
    ZDB-ID 2045436-3
    ISSN 1445-5994 ; 1444-0903
    ISSN (online) 1445-5994
    ISSN 1444-0903
    DOI 10.1111/imj.14384
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: Identifying the barriers to timely transplant waitlisting.

    Ducharlet, Kathryn / Roberts, Matthew A / Lee, Darren

    Nephrology (Carlton, Vic.)

    2016  Volume 21, Issue 5, Page(s) 443

    MeSH term(s) Humans ; Kidney Failure, Chronic ; Kidney Transplantation ; Waiting Lists
    Language English
    Publishing date 2016-05
    Publishing country Australia
    Document type Comment ; Letter
    ZDB-ID 1303661-0
    ISSN 1440-1797 ; 1320-5358
    ISSN (online) 1440-1797
    ISSN 1320-5358
    DOI 10.1111/nep.12623
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Recognising and managing dying patients in the acute hospital setting: can we do better?

    Gunasekaran, Bharathy / Scott, Caroline / Ducharlet, Kathryn / Marco, David / Mitchell, Imogen / Weil, Jennifer

    Internal medicine journal

    2019  Volume 49, Issue 1, Page(s) 119–122

    Abstract: Healthcare professionals have limited formal end-of-life care training despite the large proportion of hospital deaths. A retrospective review of 201 acute hospital deaths revealed 166 (82.6%) had documentation to suggest the patient was dying but this ... ...

    Abstract Healthcare professionals have limited formal end-of-life care training despite the large proportion of hospital deaths. A retrospective review of 201 acute hospital deaths revealed 166 (82.6%) had documentation to suggest the patient was dying but this was performed late with a median time between documentation and death of 0.84 days. Furthermore, 132 (66%) patients received an intervention in the final 48 h of life. This highlights the need to improve the recognition and management of dying patients in acute hospitals.
    MeSH term(s) Clinical Competence/standards ; Decision Making ; Documentation/statistics & numerical data ; Female ; Humans ; Male ; Physician's Role ; Sentinel Surveillance ; Terminal Care/standards ; Time Factors
    Language English
    Publishing date 2019-01-21
    Publishing country Australia
    Document type Journal Article
    ZDB-ID 2045436-3
    ISSN 1445-5994 ; 1444-0903
    ISSN (online) 1445-5994
    ISSN 1444-0903
    DOI 10.1111/imj.14177
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: Perioperative risk assessment for successful kidney transplant in leigh syndrome: a case report.

    Ducharlet, Kathryn / Thyagarajan, Dominic / Ierino, Francesco / McMahon, Lawrence P / Lee, Darren

    BMC nephrology

    2018  Volume 19, Issue 1, Page(s) 23

    Abstract: Background: Leigh syndrome (LS) is a rare neurodegenerative mitochondrial disorder which typically presents in childhood but has a varied clinical course. Renal involvement such as proximal tubulopathy in patients with mitochondrial disorders has been ... ...

    Abstract Background: Leigh syndrome (LS) is a rare neurodegenerative mitochondrial disorder which typically presents in childhood but has a varied clinical course. Renal involvement such as proximal tubulopathy in patients with mitochondrial disorders has been described. However, end stage renal disease (ESRD) is uncommon and literature regarding patients undergoing kidney transplantation is limited. Successful deceased donor renal transplant has not been previously described in a patient with Leigh Syndrome.
    Case presentation: We report a 21-year-old Han Chinese man who presented with limb weakness and unsteady gait, which progressed rapidly over a period of months until he was wheelchair-bound. He subsequently developed ESRD and was commenced on hemodialysis. Investigations revealed a m.13513G > A mutation with clinical and radiological features consistent with LS. His mitochondrial disease stabilised and he underwent a multidisciplinary assessment for deceased donor kidney transplantation to identify and minimise the LS-associated perioperative risks and potential negative effects of immunosuppressants on his LS. Successful kidney transplantation followed with excellent graft function three and a half years post-transplant and improvement in the patient's physical function.
    Conclusion: This case highlights the importance of careful pre-transplant perioperative risk assessment and post-transplant care in a rare and heterogeneous neurological disease to achieve an ultimately excellent clinical outcome. To our knowledge, this is the first report of successful deceased donor kidney transplant in a patient with known LS.
    MeSH term(s) Humans ; Kidney Failure, Chronic/blood ; Kidney Failure, Chronic/diagnostic imaging ; Kidney Failure, Chronic/etiology ; Kidney Transplantation ; Leigh Disease/blood ; Leigh Disease/complications ; Leigh Disease/diagnostic imaging ; Male ; Perioperative Care/methods ; Risk Assessment/methods ; Young Adult
    Language English
    Publishing date 2018-02-01
    Publishing country England
    Document type Case Reports ; Journal Article
    ZDB-ID 2041348-8
    ISSN 1471-2369 ; 1471-2369
    ISSN (online) 1471-2369
    ISSN 1471-2369
    DOI 10.1186/s12882-018-0816-6
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Moral Distress and Moral Injury in Nephrology During the COVID-19 Pandemic.

    Ducharlet, Kathryn / Trivedi, Mayuri / Gelfand, Samantha L / Liew, Hui / McMahon, Lawrence P / Ashuntantang, Gloria / Brennan, Frank / Brown, Mark / Martin, Dominique E

    Seminars in nephrology

    2021  Volume 41, Issue 3, Page(s) 253–261

    Abstract: Across the world, challenges for clinicians providing health care during the coronavirus disease 2019 (COVID-19) pandemic are highly prevalent and have been widely reported. Perspectives of provider groups have conveyed wide-ranging experiences of ... ...

    Abstract Across the world, challenges for clinicians providing health care during the coronavirus disease 2019 (COVID-19) pandemic are highly prevalent and have been widely reported. Perspectives of provider groups have conveyed wide-ranging experiences of adversity, distress, and resilience. In understanding and responding to the emotional and psychological implications of the pandemic for renal clinicians, it is vital to recognize that many experiences also have been ethically challenging. The COVID-19 pandemic has prompted rapid and extensive transformation of health care systems and widely impacted care provision, heightening the risk of barriers to fulfillment of ethical duties. Given this, it is likely that some clinicians also have experienced moral distress, which can occur if an individual is unable to act in accordance with their moral judgment owing to external barriers. This review presents a global perspective of potential experiences of moral distress in kidney care during the COVID-19 pandemic. Using nephrology cases, we discuss why moral distress may be experienced by health professionals when withholding or withdrawing potentially beneficial treatments owing to resource constraints, when providing care that is inconsistent with local prepandemic best practice standards, and when managing dual professional and personal roles with conflicting responsibilities. We argue that in addition to responsive and appropriate health system supports, resources, and education, it is imperative for health care providers to recognize and prevent moral distress to foster the psychological well-being and moral resilience of clinicians during extended periods of crisis within health systems.
    MeSH term(s) Adult ; Aged, 80 and over ; Bioethical Issues ; COVID-19 ; Delivery of Health Care/ethics ; Female ; Humans ; Kidney Diseases/therapy ; Male ; Middle Aged ; Morals ; Nephrology/ethics ; Occupational Stress/etiology ; Psychological Distress ; Stress Disorders, Post-Traumatic/etiology
    Language English
    Publishing date 2021-08-02
    Publishing country United States
    Document type Case Reports ; Journal Article ; Review
    ZDB-ID 604652-6
    ISSN 1558-4488 ; 0270-9295
    ISSN (online) 1558-4488
    ISSN 0270-9295
    DOI 10.1016/j.semnephrol.2021.05.006
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Patient-reported outcome measures and their utility in the management of patients with advanced chronic kidney disease.

    Ducharlet, Kathryn / Sundararajan, Vijaya / Philip, Jennifer / Weil, Jennifer / Barker, Nuala / Langham, Robyn G / Burchell, Jodie / Gock, Hilton

    Nephrology (Carlton, Vic.)

    2019  Volume 24, Issue 8, Page(s) 814–818

    Abstract: Symptom and quality of life (QOL) measures in patients with advanced chronic kidney disease are recognized indicators of patient-centred care and represent important research, quality and clinical measures. This study examined relationships between ... ...

    Abstract Symptom and quality of life (QOL) measures in patients with advanced chronic kidney disease are recognized indicators of patient-centred care and represent important research, quality and clinical measures. This study examined relationships between symptom burden, QOL and functional status and associations of symptoms and mortality risk. A multisite longitudinal cohort analysis was undertaken in chronic kidney disease stage 4/5 (no dialysis) and dialysis patients. Patients completed symptom and QOL measures (Palliative Care Outcome Symptom Score renal), World Health Organisation QOL Brief Version) and Karnofsky Performance scale. Clinical and demographic data were recorded.
    MeSH term(s) Aged ; Cohort Studies ; Female ; Humans ; Longitudinal Studies ; Male ; Patient Reported Outcome Measures ; Quality of Life ; Renal Insufficiency, Chronic/diagnosis ; Renal Insufficiency, Chronic/mortality ; Renal Insufficiency, Chronic/physiopathology ; Severity of Illness Index
    Language English
    Publishing date 2019-04-29
    Publishing country Australia
    Document type Journal Article ; Multicenter Study
    ZDB-ID 1303661-0
    ISSN 1440-1797 ; 1320-5358
    ISSN (online) 1440-1797
    ISSN 1320-5358
    DOI 10.1111/nep.13509
    Database MEDical Literature Analysis and Retrieval System OnLINE

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