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1.
N Z Med J ; 137(1594): 62-68, 2024 May 03.
Article in English | MEDLINE | ID: mdl-38696833

ABSTRACT

AIMS: The kaupapa of the Caring for Australians and New Zealanders with Kidney Impairment (CARI) Clinical practice guidelines for management of chronic kidney disease for Maori in Aotearoa New Zealand is to provide whanau-centred and evidence-based recommendations to healthcare systems, healthcare providers and healthcare workers. The guidelines include screening, identification, management and system-level responses to chronic kidney disease (CKD) to deliver best practice care to Maori affected by CKD across community, primary and secondary services. METHODS: The guidelines are funded by the Ministry of Health - Manatu Hauora and are written by a panel of Maori and non-Maori clinicians and literacy experts across Aotearoa New Zealand from Kaupapa Maori organisations, general practice and nephrology units using standardised methods. The guidelines methodology included consultation with whanau Maori with lived experience of CKD and primary and secondary care practitioners. Additional guideline development would be required to inform management of CKD for non-Maori in Aotearoa New Zealand. RESULTS: The guidelines provide recommendations about equity, governance and accountability, cultural safety, case management, information systems, social determinants of equity and wellbeing and screening. CONCLUSIONS: Recommendations to health services for Maori with CKD are based on giving effect to Te Tiriti o Waitangi and best practice care to prevent CKD, delaying its progression, treating kidney failure through timely transplantation, delivering in community and providing high-quality symptom management.


Subject(s)
Native Hawaiian or Other Pacific Islander , Renal Insufficiency, Chronic , Humans , Health Services, Indigenous/organization & administration , Maori People , New Zealand , Practice Guidelines as Topic , Renal Insufficiency, Chronic/therapy , Renal Insufficiency, Chronic/ethnology , Renal Insufficiency, Chronic/diagnosis
2.
Perit Dial Int ; : 8968608241246449, 2024 May 21.
Article in English | MEDLINE | ID: mdl-38770907

ABSTRACT

A review from the last seven years (August 2016-July 2023) of questions posted to the International Society for Peritoneal Dialysis (ISPD) website "Questions about PD" by nurses and physicians from around the world revealed that 19 of the questions were associated with optimal approaches for preventing, assessing, and managing issues related to PD catheter non-infectious complications. Our review focused on responses to these questions whereby existing best practice recommendations were considered, if available, relevant literature was cited and differences in international practices discussed. We combined similar questions, revised both the original questions and responses for clarity, as well as updated the references to these questions. PD catheter non-infectious complications can often be prevented or, with early detection, the potential severity of the complication can be minimized. We suggest that the PD nurse is key to educating the patient on PD about PD catheter non-infectious complications, promptly recognize a specific complication and bring that complication to the attention of the Home Dialysis Team. The questions posted to the ISPD website highlight the need for more education and resources for PD nurses worldwide on the important topic of non-infectious complications related to PD catheters, thereby enabling us to prevent such complications as PD catheter malfunction, peri-catheter leakage and infusion or drain pain, as well as recognize and resolve these issues promptly when they do arise, thus allowing patients to extend their time on PD therapy and enhance their quality of life whilst on PD.

3.
J Health Serv Res Policy ; : 13558196241248525, 2024 Apr 25.
Article in English | MEDLINE | ID: mdl-38662788

ABSTRACT

OBJECTIVES: Indigenous people experience higher rates of kidney failure than do non-Indigenous Peoples. However, compared to Indigenous patients, health care systems deliver kidney transplantation to non-Indigenous patients at a substantially higher rate and more frequently as the first treatment of kidney failure. Indigenous Maori patients in Aotearoa New Zealand report numerous barriers to kidney transplantation. We explore the perspectives of clinicians as stakeholders in the delivery of kidney transplantation. METHODS: In 2021/2022 we conducted in-depth qualitative interviews with key stakeholder clinicians within kidney transplantation services in Aotearoa New Zealand, asking them about the issues for Maori patients. We used thematic analysis informed by critical theory to identify key findings and used structural coding to categorize the themes at the level of society, health system, and health services. RESULTS: We interviewed 18 clinicians (nine nephrologists, including two transplant nephrologists, and nine nurses, including six transplant coordinators). We identified nine themes from stakeholders related to delivery of kidney transplantation services to Maori patients and whanau (family), categorized according to three main levels: Firstly, at the level of society (the impact of colonization and distrust). Secondly, the health care system (failure to prevent and manage kidney disease, health care model delivers inequitable outcomes, and inadequate Maori health professional workforce). Thirdly, health care services (transplantation reliant on patient and family resources, complex assessment causes untimely delays, clinical criteria for transplantation, and lack of clinician ability to effect change). CONCLUSIONS: Delivery of kidney transplantation to Indigenous Peoples is impacted at the level of society, health care system, and health care service. To address inequities, a broad approach that addresses each of these levels is required.

4.
Methods Mol Biol ; 2779: 125-143, 2024.
Article in English | MEDLINE | ID: mdl-38526785

ABSTRACT

Cell sorting is a technique commonly used in academic and biotechnology laboratories in order to separate out cells or particles of interest from heterogeneous populations. Cell sorters use the same principles as flow cytometry analyzers, but instead of cell populations passing to the waste of the instrument, they can be collected for further studies including DNA sequencing as well as other genomic, in vitro and in vivo experiments. This chapter aims to give an overview of cell sorting, the different types of cell sorters, details on how a cell sorter works, as well as protocols that are useful when embarking on a journey with cell sorting.


Subject(s)
Laboratories , Cell Separation/methods , Flow Cytometry/methods
5.
Public Health Nurs ; 41(3): 458-465, 2024.
Article in English | MEDLINE | ID: mdl-38457280

ABSTRACT

OBJECTIVE: To examine the effect of weekly nurse facilitated 5000 m running at Parkrun on markers of health in vulnerable adolescents from a high deprivation area. DESIGN: A matched pair randomized control trial. SAMPLE: Twenty-five adolescents aged 13-18, 90% identifying as Maori/Pasifika ethnicity. INTERVENTION: The intervention (INT) group participated in 6-10 Parkruns within 10 weeks, and a control group (CON) participated in one Parkrun only. A nurse facilitated the intervention offering support and encouragement at each Parkrun. MEASUREMENTS: Pre- and post-intervention testing sessions for cardiorespiratory fitness (CRF), glycated hemoglobin, body mass index (BMI), skeletal muscle mass (SMM), body fat, and hand grip strength (STR) were conducted. RESULTS: Parkrun improved CRF (F = 5.308, p = 0.035) and 5000 m time (t = 2.850, p = 0.019) by 5.5 ± 4.9 min (11.2%). Parkrun conferred a large beneficial effect on CRF (η2 = 0.249) a moderate beneficial effect on glycated hemoglobin levels (η2 = 0.119), and small beneficial effects upon SMM (η2 = 0.037) and body fat (η2 = 0.017). CONCLUSION: A weekly dose of nurse facilitated Parkrun can be recommended as a simple, accessible intervention that confers multiple beneficial effects on markers for health in adolescents from a high deprivation area.


Subject(s)
Adolescent Health , Health Promotion , Running , Adolescent , Humans , Glycated Hemoglobin , Hand Strength , Maori People , Running/physiology , Cardiorespiratory Fitness
6.
Cytometry A ; 105(2): 88-111, 2024 02.
Article in English | MEDLINE | ID: mdl-37941128

ABSTRACT

The purpose of this document is to provide guidance for establishing and maintaining growth and development of flow cytometry shared resource laboratories. While the best practices offered in this manuscript are not intended to be universal or exhaustive, they do outline key goals that should be prioritized to achieve operational excellence and meet the needs of the scientific community. Additionally, this document provides information on available technologies and software relevant to shared resource laboratories. This manuscript builds on the work of Barsky et al. 2016 published in Cytometry Part A and incorporates recent advancements in cytometric technology. A flow cytometer is a specialized piece of technology that require special care and consideration in its housing and operations. As with any scientific equipment, a thorough evaluation of the location, space requirements, auxiliary resources, and support is crucial for successful operation. This comprehensive resource has been written by past and present members of the International Society for Advancement of Cytometry (ISAC) Shared Resource Laboratory (SRL) Emerging Leaders Program https://isac-net.org/general/custom.asp?page=SRL-Emerging-Leaders with extensive expertise in managing flow cytometry SRLs from around the world in different settings including academia and industry. It is intended to assist in establishing a new flow cytometry SRL, re-purposing an existing space into such a facility, or adding a flow cytometer to an individual lab in academia or industry. This resource reviews the available cytometry technologies, the operational requirements, and best practices in SRL staffing and management.


Subject(s)
Laboratories , Software , Flow Cytometry
7.
Front Immunol ; 14: 1223653, 2023.
Article in English | MEDLINE | ID: mdl-38077328

ABSTRACT

Rac GTPases are required for neutrophil adhesion and migration, and for the neutrophil effector responses that kill pathogens. These Rac-dependent functions are impaired when neutrophils lack the activators of Rac, Rac-GEFs from the Prex, Vav, and Dock families. In this study, we demonstrate that Tiam1 is also expressed in neutrophils, governing focal complexes, actin cytoskeletal dynamics, polarisation, and migration, in a manner depending on the integrin ligand to which the cells adhere. Tiam1 is dispensable for the generation of reactive oxygen species but mediates degranulation and NETs release in adherent neutrophils, as well as the killing of bacteria. In vivo, Tiam1 is required for neutrophil recruitment during aseptic peritonitis and for the clearance of Streptococcus pneumoniae during pulmonary infection. However, Tiam1 functions differently to other Rac-GEFs. Instead of promoting neutrophil adhesion to ICAM1 and stimulating ß2 integrin activity as could be expected, Tiam1 restricts these processes. In accordance with these paradoxical inhibitory roles, Tiam1 limits the fMLP-stimulated activation of Rac1 and Rac2 in adherent neutrophils, rather than activating Rac as expected. Tiam1 promotes the expression of several regulators of small GTPases and cytoskeletal dynamics, including αPix, Psd4, Rasa3, and Tiam2. It also controls the association of Rasa3, and potentially αPix, Git2, Psd4, and 14-3-3ζ/δ, with Rac. We propose these latter roles of Tiam1 underlie its effects on Rac and ß2 integrin activity and on cell responses. Hence, Tiam1 is a novel regulator of Rac-dependent neutrophil responses that functions differently to other known neutrophil Rac-GEFs.


Subject(s)
Integrins , Neutrophils , Humans , Neutrophils/metabolism , Integrins/metabolism , rac GTP-Binding Proteins/metabolism , 14-3-3 Proteins/metabolism , CD18 Antigens/metabolism
8.
Trials ; 24(1): 730, 2023 Nov 14.
Article in English | MEDLINE | ID: mdl-37964367

ABSTRACT

BACKGROUND: Peritoneal dialysis (PD)-related infections, such as peritonitis, exit site, and tunnel infections, substantially impair the sustainability of PD. Accordingly, PD-related infection is the top-priority research outcome for patients and caregivers. While PD nurse trainers teach patients to perform their own PD, PD training curricula are not standardized or informed by an evidentiary base and may offer a potential approach to prevent PD infections. The Targeted Education ApproaCH to improve Peritoneal Dialysis outcomes (TEACH-PD) trial evaluates whether a standardized training curriculum for PD nurse trainers and incident PD patients based on the International Society for Peritoneal Dialysis (ISPD) guidelines reduces PD-related infections compared to usual training practices. METHODS: The TEACH-PD trial is a registry-based, pragmatic, open-label, multi-center, binational, cluster-randomized controlled trial. TEACH-PD will recruit adults aged 18 years or older who have not previously undergone PD training at 42 PD treatment units (clusters) in Australia and New Zealand (ANZ) between July 2019 and June 2023. Clusters will be randomized 1:1 to standardized TEACH-PD training curriculum or usual training practice. The primary trial outcome is the time to the first occurrence of any PD-related infection (exit site infection, tunnel infection, or peritonitis). The secondary trial outcomes are the individual components of the primary outcome, infection-associated catheter removal, transfer to hemodialysis (greater than 30 days and 180 days), quality of life, hospitalization, all-cause death, a composite of transfer to hemodialysis or all-cause death, and cost-effectiveness. Participants are followed for a minimum of 12 months with a targeted average follow-up period of 2 years. Participant and outcome data are collected from the ANZ Dialysis and Transplant Registry (ANZDATA) and the New Zealand Peritoneal Dialysis (NZPD) Registry. This protocol follows the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) guidelines. DISCUSSION: TEACH-PD is a registry-based, cluster-randomized pragmatic trial that aims to provide high-certainty evidence about whether an ISPD guideline-informed standardized PD training curriculum for PD nurse trainers and adult patients prevents PD-related infections. TRIAL REGISTRATION: ClinicalTrials.gov NCT03816111. Registered on 24 January 2019.


Subject(s)
Peritoneal Dialysis , Peritonitis , Adult , Humans , Curriculum , Multicenter Studies as Topic , Peritoneal Dialysis/adverse effects , Peritonitis/diagnosis , Peritonitis/etiology , Peritonitis/prevention & control , Pragmatic Clinical Trials as Topic , Quality of Life , Randomized Controlled Trials as Topic
10.
Perit Dial Int ; : 8968608231202899, 2023 Oct 11.
Article in English | MEDLINE | ID: mdl-37822201

ABSTRACT

BACKGROUND: People treated with home dialysis report social and emotional isolation, fear of catastrophic events and concern about being a burden. There is a paucity of research exploring psychological well-being among consumers dialysing at home. We aimed to explore the psychological health issues related to home dialysis, and how these issues may impact on sustaining home-based treatment. METHODS: We conducted a qualitative interview study with 36 consumers. We included patients with experience of home dialysis and caregivers. Thirteen participants had experienced peritoneal dialysis, seven home haemodialysis, seven had experienced both and nine caregivers. Data were analysed inductively to generate themes and a conceptual framework. RESULTS: We identified four themes and subthemes: overwhelming isolation and disconnection (devastating isolation of home dialysis; abandoned from support; escalating anxiety; compounding impact of feeling like a burden); importance of support systems (impact on relationships; need for emotional support; reassurance through shared experiences; valuing trustworthy and committed clinicians); burden of distress (individualised feelings of low mood; grappling with stigma surrounding diagnosis; contemplating treatment withdrawal and suicide); seeking mental health support (normalising mental health support as a distinct entity in dialysis care; overcoming barriers to seeking mental health support; additional tools for mental health support and connection). CONCLUSION: Consumers may experience intense psychological distress during home-based dialysis care. Increasing clinician and health services literacy about the management of psychological impacts of home-based dialysis may improve consumer safety, quality of life and sustainability of home treatment.

11.
Perit Dial Int ; 43(5): 383-394, 2023 09.
Article in English | MEDLINE | ID: mdl-37674306

ABSTRACT

BACKGROUND: Incremental peritoneal dialysis (PD) is increasingly advocated to reduce treatment burden and costs, with potential to better preserve residual kidney function. Global prevalence of incremental PD use is unknown and use in Australia and New Zealand has not been reported. METHODS: Binational registry analysis including incident adult PD patients in Australia and New Zealand (2007-2017), examining incidence of and outcomes associated with incremental PD (first recorded PD exchange volume <42 L/week (incremental) vs. ≥42 L/week (standard)). RESULTS: Incremental PD use significantly increased from 2.7% of all incident PD in 2007 to 11.1% in 2017 (mean increase 0.84%/year). Duration of incremental PD use was 1 year or less in 67% of cases. Male sex, Aboriginal and Torres Strait Islander (ATSI) or Maori ethnicities, age 45-59 years, medical comorbidities or treatment at a centre with low use of automated PD or icodextrin was associated with lower incidence of incremental PD use. Low body mass index and higher estimated glomerular filtration rate was associated with higher incidence. After accounting for patient and centre variables, commencing PD with an incremental prescription was associated with reduced peritonitis risk (adjusted hazard ratio 0.73, 95% confidence interval (CI) 0.61-0.86).When kidney transplantation and death were considered as competing risks, the association between incremental PD and peritonitis was not significant (sub-hazard ratio [SHR] 0.91, 95%CI 0.71-1.17, p = 0.5), however cumulative incidence of 30-day transfer to haemodialysis was lower in those receiving incremental PD (SHR 0.73, 95%CI 0.56-0.94, p = 0.01). There was no association between incremental PD and death. CONCLUSIONS: Incremental PD use is increasing in Australia and New Zealand and is not associated with patient harm.


Subject(s)
Peritoneal Dialysis , Peritonitis , Adult , Humans , Male , Middle Aged , Incidence , Maori People , Peritoneal Dialysis/adverse effects , Registries , Renal Dialysis , Australian Aboriginal and Torres Strait Islander Peoples , Female
12.
J Racial Ethn Health Disparities ; 10(1): 219-227, 2023 02.
Article in English | MEDLINE | ID: mdl-35018578

ABSTRACT

BACKGROUND: Reported experiences of racism in Aotearoa New Zealand are consistently associated with negative measures of health, self-rated health, life satisfaction, and reduced access to high-quality healthcare with subsequent poor health outcomes. In this paper, we report on perceptions and experiences of prejudice and racism by Indigenous Maori with kidney disease and their family members and donors who took part in a wider study about experiences of kidney transplantation. METHODS: We conducted semi-structured interviews with 40 Maori between September and December 2020. Participants included those with kidney disease who had considered, were being worked up for, or who had already received a kidney transplant as well as family members and potential or previous donors. We examined the data for experiences of racism using a theoretical framework for racism on three levels: institutionalised racism, personally mediated racism, and internalised racism. RESULTS: We identified subthemes at each level of racism: institutional (excluded and devalued by health system; disease stigmatization; discriminatory body weight criteria, lack of power), personally mediated (experiencing racial profiling; explicit racism), and internalized racism (shame and unworthiness to receive a transplant). CONCLUSIONS: The wide-reaching experiences and perceptions of racism described by participants with kidney disease and their families in this research point to an unfair health system and suggest that racism may be contributing to kidney transplantation inequity in Aotearoa New Zealand. Addressing racism at all levels is imperative if we are to address inequitable outcomes for Maori requiring kidney transplantation.


Subject(s)
Kidney Transplantation , Racism , Humans , New Zealand , Maori People , Family
13.
Am J Kidney Dis ; 81(2): 156-167.e1, 2023 02.
Article in English | MEDLINE | ID: mdl-36029966

ABSTRACT

RATIONALE & OBJECTIVE: Early mortality rates of female patients receiving dialysis have been, at times, observed to be higher than rates among male patients. The differences in cause-specific mortality between male and female incident dialysis patients with kidney failure are not well understood and were the focus of this study. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: Incident patients who had initiated dialysis in Australia and New Zealand in 1998-2018. EXPOSURE: Sex. OUTCOMES: Cause-specific and all-cause mortality while receiving dialysis, censored for kidney transplant. ANALYTICAL APPROACH: Adjusted cause-specific proportional hazards models, focusing on the first 5 years following initiation of dialysis. RESULTS: Among 53,414 patients (20,876 [39%] female) followed for a median period of 2.8 (IQR, 1.3-5.2) years, 27,137 (51%) died, with the predominant cause of death attributed to cardiovascular disease (18%), followed by dialysis withdrawal (16%). Compared with male patients, female patients were more likely to die in the first 5 years after dialysis initiation (adjusted hazard ratio [AHR], 1.08 [95% CI, 1.05-1.11]). Even though female patients experienced a lower risk of cardiovascular disease-related mortality (AHR, 0.93 [95% CI, 0.89-0.98]) than male patients, they experienced a greater risk of infection-related (AHR, 1.20 [95% CI, 1.10-1.32]) and dialysis withdrawal-related (AHR, 1.19 [95% CI, 1.13-1.26]) mortality. LIMITATIONS: Possibility of residual and unmeasured confounders. CONCLUSIONS: Compared with male patients, female patients had a higher risk of all-cause mortality in the first 5 years after dialysis initiation, a difference driven by higher rates of mortality from infections and dialysis withdrawals. These findings may inform the study of sex differences in mortality in other geographic settings.


Subject(s)
Cardiovascular Diseases , Kidney Failure, Chronic , Humans , Male , Female , Renal Dialysis/adverse effects , Retrospective Studies , Cohort Studies , Survival Analysis
14.
Perit Dial Int ; 43(6): 442-447, 2023 11.
Article in English | MEDLINE | ID: mdl-36475557

ABSTRACT

When a patient on peritoneal dialysis (PD) presents with suspected PD-related peritonitis (e.g. cloudy PD fluid and abdominal pain), one of the most important initial aspects of management is for the nephrology nurse/home dialysis nurse to collect PD effluent specimens for white blood cells count, Gram stain, culture and sensitivity for inspection and to send for laboratory testing before antibiotics are started. A review by seven members of the International Society for Peritoneal Dialysis (ISPD) Nursing Committee of all 133 questions posted to the ISPD website 'Questions about PD' over the last 4 years (January 2018-December 2021), revealed 97 posted by nephrology nurses from around the world. Of these 97 questions, 10 were noted to be related to best practices for PD effluent specimen collection. For our review, we focused on these 10 questions along with their responses by the members of the ISPD 'Ask The Experts Team', whereby existing best practice recommendations were considered, if available, relevant literature was cited and differences in international practice discussed. We revised the original responses for clarity and updated the references. We found that these 10 questions were quite varied but could be organised into four categories: how to collect PD effluent safely; how to proceed with PD effluent collection; how to collect PD effluent for assessment; and how to proceed with follow-up PD effluent collection after intraperitoneal antibiotics have been started. In general, we found that there was limited evidence in the PD literature to answer several of these 10 questions posted to the ISPD website 'Questions about PD' by nephrology nurses from around the world on this important clinical topic of best practices for PD effluent specimen collection. Some of these questions were also not addressed in the latest ISPD Peritonitis Guidelines. Moreover, when polling members of our ISPD Nursing Committee we found when answering a few of these questions, nursing practice varied within and among countries. We encourage PD nurses to conduct their own research on this important topic, focusing on areas where research evidence is lacking.


Subject(s)
Peritoneal Dialysis , Peritonitis , Humans , Peritoneal Dialysis/adverse effects , Anti-Bacterial Agents/therapeutic use , Peritonitis/diagnosis , Peritonitis/etiology , Peritonitis/drug therapy , Dialysis Solutions
15.
Perit Dial Int ; 43(4): 315-323, 2023 07.
Article in English | MEDLINE | ID: mdl-36127835

ABSTRACT

BACKGROUND: Gastrointestinal (GI) health is considered vital to the success of peritoneal dialysis (PD) and is critically important to patients, caregivers and clinicians. However, the multiplicity of GI outcome measures in trials undermines the ability to evaluate the frequency, impact and treatment of GI symptoms in patients receiving PD. Therefore, this study aimed to assess the range and consistency of GI outcomes reported in contemporary PD trials. STUDY DESIGN: Systematic review. SETTING AND POPULATION: Individuals with kidney failure requiring PD. SELECTION CRITERIA: All randomised controlled trials involving patients on PD, identified from the PUBMED, EMBASE and COCHRANE Central Registry of controlled Trials (CENTRAL) database, from January 2010 to July 2022. INTERVENTIONS: Any PD-related intervention. OUTCOMES: The frequency and characteristics of GI outcome measures were analysed and classified. RESULTS: Of the 324 eligible PD trials, GI outcomes were only reported in 61 (19%) trials, mostly as patient-reported outcomes (45 trials; 74%). The most frequently reported outcomes were nausea in 27 (43%), diarrhoea in 26 (43%), vomiting in 22 (36%), constipation in 21 (34%) and abdominal pain in 19 (31%) of trials. PD peritonitis was the primary non-GI outcome reported in 24 (40%) trials, followed by death in 13 (21%) trials) and exit-site infection in 9 (15%) trials). Across all trials, 172 GI outcome measures were extracted and grouped into 29 different outcomes. Nausea and diarrhoea contributed to 16% and 15% of GI outcomes, respectively, while vomiting, constipation and abdominal pain contributed to 13%, 12% and 12%, respectively. Most (90%) GI outcomes were patient-reported adverse effects with no defined metrics. Faecal microbiome was reported as the primary study outcome in 3 (100%) trials using the subjective global assessment score, GI symptom rating scale and faecal microbiological and biochemical analysis. Two trials reported nausea as a primary study outcome using symptom assessment score (SAS) and kidney disease quality of life-short-form-36. One trial each reported anorexia and abdominal pain as the primary study outcome using SAS. Bowel habits, constipation and stool type were also reported as the primary study outcome in one trial each using the Bristol stool form scale. GI bleeding was reported as the secondary outcome in three (37%) out of eight trials reporting it. LIMITATIONS: Restricted sampling frame to focus on contemporary trials. CONCLUSIONS: Despite the clinical importance of GI outcomes among patients on PD, they are reported in only 19% of PD trials, using inconsistent metrics, often as patient-reported adverse events. Efforts to standardise GI outcome reporting are critical to optimising comparability, reliability and value of trial evidence to improve outcomes for patients receiving PD.


Subject(s)
Peritoneal Dialysis , Quality of Life , Humans , Reproducibility of Results , Peritoneal Dialysis/adverse effects , Constipation/etiology , Constipation/therapy , Diarrhea , Vomiting/etiology , Nausea/etiology , Abdominal Pain
18.
Perit Dial Int ; 42(6): 562-570, 2022 11.
Article in English | MEDLINE | ID: mdl-35538693

ABSTRACT

BACKGROUND: Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD. METHODS: Online consensus workshop to identify the essential characteristics of life participation as a core outcome, with the goal of establishing a patient-reported outcome measure for use in all trials in patients receiving PD. Thematic analysis of transcripts was performed. RESULTS: Fifty-six participants, including 17 patients and caregivers, from 15 countries convened via online videoconference. Four themes were identified: reconfiguring expectations of daily living (accepting day-to-day fluctuation as the norm, shifting thresholds of acceptability, preserving gains in flexibility and freedom), ensuring broad applicability and interpretability (establishing cross-cultural relevance, incorporating valued activities, distinguishing unmodifiable barriers to life participation), capturing transitions between modalities and how they affect life participation (responsive to trajectory towards stable, reflecting changes with dialysis transitions) and maximising feasibility of implementation (reducing completion burden, administrable with ease and flexibility). CONCLUSIONS: There is a need for a validated, generalisable outcome measure for life participation in patients receiving PD. Feasibility, including length of time to complete and flexible mode of delivery, are important to allow implementation in all trials that include patients receiving PD.


Subject(s)
Nephrology , Peritoneal Dialysis , Humans , Consensus , Outcome Assessment, Health Care , Renal Dialysis/adverse effects
20.
Am J Kidney Dis ; 80(1): 20-29.e1, 2022 07.
Article in English | MEDLINE | ID: mdl-35151826

ABSTRACT

RATIONALE & OBJECTIVE: In Aotearoa/New Zealand, Indigenous Maori experience inequitable delivery of kidney transplantation despite disproportionately higher rates of kidney failure. This study describes Maori patients' and families' values, perspectives, and experiences related to kidney transplantation. STUDY DESIGN: Qualitative interview study. SETTING & PARTICIPANTS: We conducted 40 in-depth interviews of 40 Maori: 8 who had received a transplant, 20 with chronic kidney disease (which included 10 on the deceased donor transplant list, 9 who were interested in transplantation and not currently waitlisted or who were ineligible for waitlisting, and 1 who was not interested in transplantation), 4 live-kidney donors, and 8 family members including 6 who had experiences with donor assessment. ANALYTICAL APPROACH: Data were analyzed inductively to generate themes and a conceptual framework. RESULTS: We identified 5 major themes: actively seeking a kidney transplant; evolving attitudes toward traditional values and practices; being confronted by interpersonal and systemic racism; poor information and communication; and challenged by social determinants of health. LIMITATIONS: Participants were recruited nationally through patient advocacy organizations and 1 regional kidney service. Potential participants unrelated to these groups or region could not be included. CONCLUSIONS: Maori participants were highly motivated to seek kidney transplantation and were inspired by positive experiences through donating and receiving a kidney. However, they faced barriers including social determinants, racism, and lack of information that impacted both direct experiences of transplantation and access to transplantation services.


Subject(s)
Kidney Transplantation , Racism , Humans , Native Hawaiian or Other Pacific Islander , New Zealand , Qualitative Research
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