Management of chronic kidney disease for Maori in Aotearoa New Zealand: a summary of clinical practice guidelines.

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.

Health care delivery of kidney transplantation to indigenous Maori in Aotearoa New Zealand: A qualitative interview study with clinician stakeholders.

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.

Nurse facilitated 5000 m running at Parkrun improves vulnerable adolescent health in a high deprivation area: A matched pair randomized control trial.

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.

Multi-center, pragmatic, cluster-randomized, controlled trial of standardized peritoneal dialysis (PD) training versus usual care on PD-related infections (the TEACH-PD trial): trial protocol.

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.

Consumer values, perspectives and experiences of psychological health when living with dialysis at home: An in-depth interview study.

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.

"We Need a System that's Not Designed to Fail Maori": Experiences of Racism Related to Kidney Transplantation in Aotearoa New Zealand.

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.

Range and consistency of gastrointestinal outcomes reported in peritoneal dialysis trials: A systematic review.

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.

Values, Perspectives, and Experiences of Indigenous Maori Regarding Kidney Transplantation: A Qualitative Interview Study in Aotearoa/New Zealand.

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.

Exploring rural and remote patients' experiences of health services for kidney disease in Aotearoa New Zealand: An in-depth interview study.

AIMS: People with chronic kidney disease (CKD) living in rural communities have increased risks of death, morbidity, hospitalization and poorer quality of life compared with people with CKD living in urban areas. This study explores the experiences and perceptions of rural and remote patients and families in relation to accessing health services for kidney disease in Aotearoa New Zealand. METHODS: We conducted an In-depth interview study. We purposively sampled adult patients with CKD and their caregivers who lived further than 100 km (62 miles) or more than 1 h drive from their nearest dialysis or transplant centre. Qualitative data were analyzed inductively to generate themes, subthemes and a conceptual framework. RESULTS: Of 35 participants, including 26 patients and nine caregivers, 51% were female, 71% travelled between 1 and 3 h to their nearest renal unit, and the remainder, between 3 and 6 h. We identified five themes and related subthemes: intense psychological impact of rurality; pressure of extended periods away from home; services not designed for rural and remote living; suffering from financial losses; and poor communication. CONCLUSION: Rural and remote patients with CKD and their caregivers face the added challenges of separation from family, social and community support and financial burden, which can have profound consequences on their psychological and physical well-being and that of their families.

Patients' and caregivers' expectations and experiences of remote monitoring for peritoneal dialysis: A qualitative interview study.

BACKGROUND: Peritoneal dialysis (PD) can offer more flexibility and independence compared with hemodialysis, yet uptake of PD remains low. Barriers to PD include the fear of dialyzing without medical assistance and uncertainty about recognizing and managing complications. There is increasing use of remote monitoring in automated peritoneal dialysis (APD), but little is known about its acceptability by patients and caregivers. We aimed to describe patients' and caregivers' expectations and experiences of remote monitoring for APD. METHODS: Qualitative study design, using semi-structured face-to-face interviews of patients who either receiving PD or were considered eligible for PD, and their caregivers. Transcripts were analyzed using thematic analysis. RESULTS: Of the 34 participants, 27 were patients and the remainder caregivers. Four themes (with subthemes) were identified reducing patient burden (seeking reassurance and shared responsibility, convenience and accuracy); strengthening partnerships in care (empowering knowledge and understanding, increased accountability to dialysis team); improving access to treatment (saving time and money, providing timely care and avoiding hospital); and preserving quality patient-provider interactions (enhancing face-to-face contact, clarifying expectations of access and use of data). CONCLUSIONS: Remote monitoring may increase patient knowledge about their kidney disease and its treatment, encourage accountability to the clinical team, enhance partnerships with clinicians, and improve access to treatment and timely care. It is also important to ensure that remote monitoring does not replace face-to-face clinical contact with clinicians.

Experiences of registered nurse prescribers; a qualitative study.

Aims: This study aimed to investigate the experiences of registered prescribers and their perceptions of the enablers and barriers to registered prescribing and the value of this fledgling role. Background: The role of prescribing has been extended to registered nurses in New Zealand. By adding the designated prescribing role to a nurse's role, their scope of practice expands and nurses are able to provide patients with holistic care while achieving greater independence and role satisfaction. Yet new nurse prescribers can experience anxiety and fear when confronted with the reality of the responsibility of prescribing. Methods: Sixteen semi-structured interviews were conducted with registered nurse prescribers across New Zealand. Data were analysed using a general inductive approach and thematic analysis utilised to identify themes and sub-themes. Results: Sixteen registered nurse prescribers participated in the study. Three main themes emerged with sub-themes: ability to expand practice, improving access to care, and importance of working in a collaborative team. Participants explained how they enjoyed the challenge and responsibility of the new prescribing role yet were frustrated with the realities of the restrictions of what they could actually prescribe and in some cases lack of role recognition. Registered nurse prescribing also improved access to care as nurses felt they provided more comprehensive care, resulting in reduced wait times, better continuity of care and a reduction in patient costs. The participants highlighted the importance of working in a collaborative team and believed their ability to prescribe maximised clinician time, however cautioned the need for on-going clinical mentorship and a prepared and supportive work environment. Conclusions: The addition of registered nurse prescribing provides a number of advantages to individual nurses in terms of career development and job satisfaction, and to patients and the health care system. The benefits to health care consumers and the health care system align directly to health care priorities of improving equity and access to care. Impact statement: Registered nurse prescribers perceive a number of advantages to the addition of prescribing to their own practice and benefits to patients and the health care system by enabling more accessible and cost-effective care.

Capturing and monitoring global differences in untreated and treated end-stage kidney disease, kidney replacement therapy modality, and outcomes.

A large gap between the number of people with end-stage kidney disease (ESKD) who received kidney replacement therapy (KRT) and those who needed it has been recently identified, and it is estimated that approximately one-half to three-quarters of all people with ESKD in the world may have died prematurely because they could not receive KRT. This estimate is aligned with a previous report that estimated that >3 million people in the world died each year because they could not access KRT. This review discusses the reasons for the differences in treated and untreated ESKD and KRT modalities and outcomes and presents strategies to close the global KRT gap by establishing robust health information systems to guide resource allocation to areas of need, inform KRT service planning, enable policy development, and monitor KRT health outcomes.

Supportive care for end-stage kidney disease: an integral part of kidney services across a range of income settings around the world.

A key component of treatment for all people with advanced kidney disease is supportive care, which aims to improve quality of life and can be provided alongside therapies intended to prolong life, such as dialysis. This article addresses the key considerations of supportive care as part of integrated end-stage kidney disease care, with particular attention paid to programs in low- and middle-income countries. Supportive care should be an integrated component of care for patients with advanced chronic kidney disease, patients receiving kidney replacement therapy (KRT), and patients receiving non-KRT conservative care. Five themes are identified: improving information on prognosis and support, developing context-specific evidence, establishing appropriate metrics for monitoring care, clearly communicating the role of supportive care, and integrating supportive care into existing health care infrastructures. This report explores some general aspects of these 5 domains, before exploring their consequences in 4 health care situations/settings: in people approaching end-stage kidney disease in high-income countries and in low- and middle-income countries, and in people discontinuing KRT in high-income countries and in low- and middle-income countries.

Clinicians' experiences with remote patient monitoring in peritoneal dialysis: A semi-structured interview study.

BACKGROUND: Fear of catastrophic events and uncertainty about safety at home are barriers to choosing peritoneal dialysis (PD). Remote monitoring may address these concerns and is increasingly being used in patients on automated peritoneal dialysis (APD). This study aims to describe clinicians' perspectives and experiences of remote monitoring in caring for patients on PD. METHODS: We conducted semi-structured interviews with nephrologists and dialysis nurses across nine dialysis units in New Zealand who had experience using remote monitoring with patients on APD. Interviews were transcribed and analysed using thematic analysis. RESULTS: Thirteen registered nurses and 12 nephrologists or nephrologists-in-training (total N = 25) participated. Four themes were identified: promoting and maintaining PD (providing reassurance to patients through continual surveillance, supporting confidence at home and sustaining PD as the patient-preferred treatment); enabling data-driven decisions (using comprehensive clinical data in providing timely and accessible care, and identifying and supporting patient adherence); establishing boundaries for use (negotiating privacy and independence, clarifying clinician and patient responsibilities and strengthening nursing innovation and capability); and enhancing patient-focused care (developing empathy for patients, enabling self-management and reducing time and financial burden in accessing care). CONCLUSIONS: Remote monitoring is valued by clinicians in promoting and maintaining patients on PD and enabling data-driven decisions. Remote monitoring enhances patient-focused care, but clinicians also emphasise the need to protect patient privacy and establish boundaries for use. Remote monitoring that supports the clinicians' role and adheres to principles of data security maintains patient privacy may enhance care and outcomes for patients on PD.

parents' perspectives and experiences of kidney transplantation in children: A qualitative interview study.

BACKGROUND AND OBJECTIVE: Kidney transplantation offers greater life expectancy, quality of life and participation compared with dialysis, in children with end stage kidney disease. This study explores the perspectives and experiences of parents of children undergoing kidney transplantation, as the experiences of parents in the process of transplantation is not completely understood. METHODS: Face-to-face semi-structured interviews were conducted with parents of transplanted children across New Zealand. Data were analysed using thematic analysis to identify themes of participant experiences and perspectives. RESULTS: We interviewed 13 mothers and four fathers of the transplanted children. Four themes were identified: actively pursuing transplant (the urgency of transplant; needing to drive the transplantation process); lack of on-going support (needing access to specialists; feeling unprepared for demands of transplantation, and vulnerability of unmet emotional concerns), pressure on the family unit (strain of distance; disrupting parent team; added burden of parent as donor; financial stress) and constant concern for the future (living with enduring uncertainty; pressure of responsibility; apprehension of teenage years). CONCLUSIONS: Parents of children need to play an active role in advocating and driving the transplantation process. Transplantation leads to parental role disruption, emotional and financial stress, and insecurity about the future for their child. These findings suggest the need for greater communication and transparency in the transplantation process with parents, improved emotional and financial support for families during and after transplantation, and explicit assistance for parental roles in families when a caregiver is the donor.

Understanding the experiences, perspectives and values of indigenous women around smoking cessation in pregnancy: systematic review and thematic synthesis of qualitative studies.

BACKGROUND: The prevalence of smoking during pregnancy among indigenous women approaches 50% and is associated with sudden infant death, pregnancy loss, preterm delivery, low birth weight, and anatomical deformity. This study aims to synthesise qualitative studies by reporting experiences, perceptions, and values of smoking cessation among pregnant indigenous women to inform potential interventions. METHOD: A highly-sensitive search of MEDLINE, Embase, PsychINFO, and CINAHL, in conjunction with analysis of Google Scholar and reference lists of related studies was conducted in March 2018. We utilised two methods (thematic synthesis and an indigenous Maori analytical framework) in parallel to analyse data. Completeness of reporting in studies was evaluated using the Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework. RESULTS: We included seven studies from Australia and New Zealand involving 250 indigenous women. Three themes were identified. Realising well-being and creating agency included giving the best start to baby, pride in being a healthy mum, female role models, and family support. Understanding the drivers for smoking included the impact of stress and chaos that hindered prioritisation of self-care, the social acceptability of smoking, guilt and feeling judged, and inadequate information about the risks of smoking. Indigenous women strongly preferred culturally responsive approaches to smoking cessation, placing value on programs designed specifically for and by indigenous people, that were accessible, and provided an alternative to smoking. CONCLUSION: Future interventions and smoking cessation programmes might be more effective and acceptable to indigenous women and families when they harness self-agency and the desire for a healthy baby, recognise the high value of indigenous peer involvement, and embed a social focus in place of smoking as a way to maintain community support and relationships. Development and evaluation of smoking cessation programs for pregnant indigenous women and families is warranted.

Patient expectations and experiences of remote monitoring for chronic diseases: Systematic review and thematic synthesis of qualitative studies.

OBJECTIVES: To describe the range of patients' beliefs, attitudes, expectations, and experiences of remote monitoring for chronic conditions across different healthcare contexts and populations. DESIGN: We searched MEDLINE, Embase, PsychINFO, and CINAHL, Google Scholar, and reference lists of related studies through to July 2017. Thematic synthesis was used to analyse the findings of the primary studies. Study characteristics were examined to explain differences in findings. SETTING: All healthcare settings PARTICIPANTS: Adults with chronic diseases OUTCOMES: Patient beliefs, attitudes, expectations and experiences of remote monitoring RESULTS: We included 16 studies involving 307 participants with chronic obstructive pulmonary disease, heart failure, diabetes, hypertension, and end stage kidney disease. The studies were conducted in 8 countries. We identified four themes: gaining knowledge and triggering actions (tracking and responding to change, prompting timely and accessible care, supporting self-management and shared decision-making); reassurance and security (safety in being alone, peace of mind); concern about additional burden (reluctance to learn something new, lack of trust in technology, avoiding additional out-of-pocket costs), and jeopardising interpersonal connections (fear of being lost in data, losing face to face contact). CONCLUSIONS: For patients with chronic disease, remote monitoring increased their disease-specific knowledge, triggered earlier clinical assessment and treatment, improved self-management and shared decision-making. However, these potential benefits were balanced against concerns about losing interpersonal contact, and the additional personal responsibility of remote monitoring.

Association of incident dialysis modality with mortality: a protocol for systematic review and meta-analysis of randomized controlled trials and cohort studies.

BACKGROUND: At least 2.6 million adults and children receive dialysis treatment for end-stage kidney disease (ESKD) worldwide. The large majority of these receive hemodialysis (HD), while the remaining receive peritoneal dialysis (PD). Peritoneal dialysis may be associated with similar mortality outcomes as HD, and patient-reported outcomes are potentially increased with PD. Existing evidence for the mortality associated with PD was summarized over 20 years ago, and there has been greater marginal improvement in survival with PD relative to HD since that time. It is therefore timely to reexamine the question of differential mortality by modality and summarize evidence from more contemporary practice settings. METHODS/DESIGN: Electronic databases will be systematically searched for publications that report the association between dialysis modality (HD or PD) with death from any cause and cause-specific death in incident patients with end-stage kidney disease. The database searches will be supplemented by searching through citations and references and consultation with experts. Studies published before 1995 will be excluded. Screening of both titles and abstracts will be done by two independent reviewers. All disagreements will be resolved by an independent third reviewer. A quantitative meta-analysis of effect sizes and standard errors will be applied. DISCUSSION: Our systematic review will update previous evidence summaries and provide a quantitative and standardized assessment of the contemporary literature comparing HD and PD including published and unpublished non-English studies from greater China, Taiwan, and Japan. This review will inform shared decision-making around initial dialysis modality choice and jurisdiction-level considerations of dialysis practice. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018111829.

Cost Effectiveness of Dialysis Modalities: A Systematic Review of Economic Evaluations.

BACKGROUND AND OBJECTIVE: The economic burden of providing maintenance dialysis to those with end-stage kidney disease continues to increase. Home dialysis, including both haemodialysis and peritoneal dialysis, is commonly assumed to be more cost effective than facility dialysis, with some countries adopting a home-first policy in an attempt to reduce costs. However, the cost effectiveness of this approach is uncertain. The aim of this study is to review all published cost-effectiveness analyses comparing all alternative dialysis modalities for people with end-stage kidney disease. METHODS: We conducted a systematic review of MEDLINE, the National Health Service Economic Evaluation Database, and Health Technology Assessment Database from the Centre of Reviews and Dissemination, The Cochrane Library and Econlit from January 2000 to December 2017. Published economic evaluations were included if they provided comparative information on the costs and health outcomes of alternative dialysis modalities. RESULTS: The review identified 16 economic evaluations comparing dialysis modalities from both high- and low-income countries. The majority (69%) were undertaken solely from the perspective of the payer or service provider, 14 (88%) included a cost-utility analysis and eight (50%) were modelled evaluations. The studies addressed costs and health outcomes of multiple dialysis modalities, with many reporting average cost effectiveness rather than incremental cost effectiveness. Almost all evaluations suggest home dialysis to be less costly and to offer comparable or better health outcomes than in-centre haemodialysis. However, the quality-of-life benefit for each modality was poorly defined and inconsistent in terms of magnitude and direction of differences between modalities and across studies. Other issues include exclusion of competing modalities and use of arbitrary assumptions with regard to the mix of modalities. CONCLUSIONS: The ability to identify the mix of dialysis modalities that provides best outcomes for patients and health budgets is uncertain particularly given the lack of societal perspectives and inconsistencies between published studies.