Publications by authors named "Allison Tong"

372 Publications

Experiences and Perspectives of Transgender Youths in Accessing Health Care: A Systematic Review.

JAMA Pediatr 2021 Jul 19. Epub 2021 Jul 19.

Sydney School of Public Health, University of Sydney, Sydney, Australia.

Importance: Transgender and nonbinary youths have a higher incidence of a range of health conditions and may paradoxically face limited access to health care.

Objective: To describe the perspectives and needs of transgender youths in accessing health care.

Evidence Review: MEDLINE, Embase, PsycInfo, and the Cumulative Index to Nursing and Allied Health Literature were searched from inception to January 2021. Qualitative studies of transgender youths' perspectives on accessing health care were selected. Results from primary studies were extracted. Data were analyzed using thematic synthesis.

Findings: Ninety-one studies involving 884 participants aged 9 to 24 years across 17 countries were included. We identified 6 themes: experiencing pervasive stigma and discrimination in health care, feeling vulnerable and uncertain in decision-making, traversing risks to overcome systemic barriers to transitioning, internalizing intense fear of consequences, experiencing prejudice undermining help-seeking efforts, and experiencing strengthened gender identity and finding allies. Each theme encapsulated multiple subthemes.

Conclusions And Relevance: This review found that transgender youths contend with feelings of gender incongruence, fear, and vulnerability in accessing health care, which are compounded by legal, economic, and social barriers. This can lead to disengagement from care and resorting to high-risk and unsafe interventions. Improving access to gender-affirming care services with a cultural humility lens and addressing sociolegal stressors may improve outcomes in transgender and nonbinary youths.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1001/jamapediatrics.2021.2061DOI Listing
July 2021

Living Well with Kidney Disease by Patient and Care-Partner Empowerment: Kidney Health for Everyone Everywhere.

Indian J Nephrol 2021 Mar-Apr;31(2):83-88. Epub 2021 Apr 20.

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labeling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.4103/ijn.IJN_59_21DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8240932PMC
April 2021

Disparities in decision-making practices for dialysis modality in advanced chronic kidney disease: closing the gap across Europe.

Nephrol Dial Transplant 2021 Jul 10. Epub 2021 Jul 10.

Sydney School of Public Health, The University of Sydney, Sydney, NSW 2006, Australia.

View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1093/ndt/gfab214DOI Listing
July 2021

Perspectives on ability to work from patients' receiving dialysis and caregivers: analysis of data from the global SONG initiative.

J Nephrol 2021 Jul 9. Epub 2021 Jul 9.

College of Medicine and Public Health, Flinders University, Adelaide, Australia.

Background: Patients receiving dialysis have low employment rates, which compounds poorer health and socioeconomic outcomes. Reasons for under- and unemployment remain underexplored. We aimed to describe the perspectives of patients receiving hemodialysis (HD) or peritoneal dialysis (PD) and their caregivers on ability to work.

Methods: Data was derived from adult patients' and caregivers' responses from 26 focus groups, two international Delphi surveys and two consensus workshops conducted through the Standardized Outcomes in Nephrology (SONG-HD) and SONG-PD programs. Our secondary thematic analysis identified concepts around ability to work.

Results: Five hundred four patients and 146 caregivers from 86 countries were included. We identified five themes: financial pressures and instability (with subthemes of rationing the budget with increased expenditure, losing financial independence and threatened job security); struggling to meet expectations (burdened by sociocultural norms and striving to protect independence); contending with upheaval of roles and responsibilities (forced to establish a new routine to accommodate work, symptoms disrupting work, prioritizing work and other duties, and adjusting to altered capacity to work); enabling flexibility and control (employment driving decisions about dialysis modality and schedule, workplace providing occupational safety and adaptability, requiring organizational support and planning for a future career); and finding purpose and value (accepting and redefining identity, pride and fulfillment, and protecting mental well-being).

Conclusions: Employment enabled patients to maintain their identity, independence, financial security and mental health. Symptom burden, workplace inflexibility and juggling roles are major challenges. Interventions addressing motivation, workplace flexibility and safety, and establishing goals and routines could support patients' capacities to work, thereby improving overall well-being and productivity.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1007/s40620-021-01105-yDOI Listing
July 2021

Patients' perspectives on shared decision-making about medications in psoriatic arthritis: an interview study.

Arthritis Care Res (Hoboken) 2021 Jul 7. Epub 2021 Jul 7.

Sydney School of Public Health, The University of Sydney, Sydney, Australia.

Introduction: Decision-making regarding medications to manage psoriatic arthritis is complex because of multiple disease manifestations and comorbidities. Fear of side effects from systemic medications and misalignment in priorities between patients with psoriatic arthritis and rheumatologists makes shared decision-making challenging. We aimed to describe the perspectives of patients with psoriatic arthritis on shared decision-making around medication taking.

Methods: Face-to-face semi-structured interviews were conducted with 25 adult patients with psoriatic arthritis in Australia. Transcripts were thematically analyzed.

Results: Five themes were identified: lacking agency in decision making (denied choice, knowledge asymmetry, desperation and necessity, restricted by unfair eligibility criteria, automated approach); overwhelmed by potential harms (daunted by aggressive therapy, anticipating lifestyle disruption from side effects, jeopardizing fertility and pregnancy, avoiding relapse); gaining confidence (discernable benefit in function and mental health, sharpening knowledge over time, expertise of family and peers, empowered by information); opting for alternatives (pursuing normality, suspicion of over-medicalization, seeking comprehensive solutions); and developing trust and fortifying collaboration (assurance through a personable approach, seeking consistency, supported in decisional power, resolution through respectful negotiation).

Conclusions: Patients with psoriatic arthritis lack agency in making treatment decisions and are overwhelmed by the potential harms of systemic medication. Improving knowledge and trust with medical teams in a supportive and collaborative environment, and strategies for managing risks and side-effects may improve decision-making about pharmacological management of psoriatic arthritis.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1002/acr.24748DOI Listing
July 2021

Researchers' perspectives on methodological challenges and outcomes selection in interventional studies targeting medication adherence in rheumatic diseases: an OMERACT-adherence study.

BMC Rheumatol 2021 Jul 8;5(1):26. Epub 2021 Jul 8.

Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, University of British Columbia, 2405 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada.

Background: Research on adherence interventions in rheumatology is limited by methodological issues, particularly heterogeneous outcomes. We aimed to describe researchers' experiences with conducting interventional studies targeting medication adherence in rheumatology and their perspectives on establishing core outcomes.

Methods: Semi-structured interviews using audio conference were conducted with researchers who had conducted an adherence study of any design in the past 10 years. Data collection and thematic analysis were performed iteratively, until saturation.

Results: We interviewed 13 researchers, most of whom worked in academia and specialized in epidemiology and/or health services research. We identified three themes: 1) improving measurement of adherence (considering all phases of adherence, using appropriate and relevant measures, and establishing clinically meaningful thresholds); 2) challenges in designing and appraising adherence intervention studies (considering the confusion over a plethora of outcomes, difficulties with powering studies to demonstrate meaningful changes, and suboptimal descriptions of adherence interventions in published studies); and 3) advancing outcome assessment in adherence intervention studies (capturing rationale for developing a core domain set as well as recommendations and anticipated challenges by participants).

Conclusions: Uniquely gathering perspectives from international adherence researchers, our findings led to researcher-informed recommendations for improving adherence research including specifying the targeted adherence phase in designing interventions and studies and providing a glossary of terms to promote consistency in reporting. We also identified recommendations for developing a core domain set for interventional studies targeting medication adherence including involvement of patients, clinicians, and other stakeholders and methodological and practical considerations to establish rigor and support uptake.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1186/s41927-021-00193-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8265120PMC
July 2021

Scope and heterogeneity of outcomes reported in randomized trials in patients receiving peritoneal dialysis.

Clin Kidney J 2021 Jul 31;14(7):1817-1825. Epub 2020 Dec 31.

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.

Background: Randomized trials can provide evidence to inform decision-making but this may be limited if the outcomes of importance to patients and clinicians are omitted or reported inconsistently. We aimed to assess the scope and heterogeneity of outcomes reported in trials in peritoneal dialysis (PD).

Methods: We searched the Cochrane Kidney and Transplant Specialized Register for randomized trials in PD. We extracted all reported outcome domains and measurements and analyzed their frequency and characteristics.

Results: From 128 reports of 120 included trials, 80 different outcome domains were reported. Overall, 39 (49%) domains were surrogate, 23 (29%) patient-reported and 18 (22%) clinical. The five most commonly reported domains were PD-related infection [59 (49%) trials], dialysis solute clearance [51 (42%)], kidney function [45 (38%)], protein metabolism [44 (37%)] and inflammatory markers/oxidative stress [42 (35%)]. Quality of life was reported infrequently (4% of trials). Only 14 (12%) trials included a patient-reported outcome as a primary outcome. The median number of outcome measures (defined as a different measurement, aggregation and metric) was 22 (interquartile range 13-37) per trial. PD-related infection was the most frequently reported clinical outcome as well as the most frequently stated primary outcome. A total of 383 different measures for infection were used, with 66 used more than once.

Conclusions: Trials in PD include important clinical outcomes such as infection, but these are measured and reported inconsistently. Patient-reported outcomes are infrequently reported and nearly half of the domains were surrogate. Standardized outcomes for PD trials are required to improve efficiency and relevance.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1093/ckj/sfaa224DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8243273PMC
July 2021

What Matters 2 Adults (WM2Adults): Understanding the Foundations of Aboriginal and Torres Strait Islander Wellbeing.

Int J Environ Res Public Health 2021 06 8;18(12). Epub 2021 Jun 8.

Menzies School of Health Research, Charles Darwin University, Darwin 0810, Australia.

Aboriginal and Torres Strait Islander people experience a greater range of health and social disadvantages compared to other Australians. Wellbeing is a culturally-bound construct, and to date, a national evidence base around the components of wellbeing for Aboriginal and Torres Strait Islander people is lacking. Understanding and measurement of wellbeing for this population is critical in achieving health equity. This paper aims to identify and describe the foundations of wellbeing for Aboriginal and Torres Strait Islander adults. This national qualitative study was underpinned by an Indigenist research approach which privileges the voices of Aboriginal and Torres Strait Islander people. Aboriginal and Torres Strait Islander adults were purposively recruited from around Australia between September 2017 and September 2018 to participate in Yarning Circles, led by Aboriginal and Torres Strait Islander researchers. Yarning Circles were audio recorded, transcribed and analyzed. A Collaborative Yarning Methodology was used, which incorporated reflexive thematic analysis to identify and describe the foundations of wellbeing reported by participants. A total of 359 Aboriginal and Torres Strait Islander adults participated. Our analysis revealed five foundations of wellbeing: belonging and connection; holistic health; purpose and control; dignity and respect; and basic needs. These foundations were deeply interwoven by three interconnected aspects of Aboriginal and Torres Strait Islander life: family, community and culture. The findings of this study will substantially aid our efforts to develop a new wellbeing measure for Aboriginal and Torres Strait Islander adults. The iterative Indigenist methods used in this study provide a robust research methodology for conducting large-scale, nationally-relevant qualitative research with Aboriginal and Torres Strait Islander people. Policies and practices that are informed by our results have the potential to address outcomes that are meaningful for Aboriginal and Torres Strait Islander people.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.3390/ijerph18126193DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8226989PMC
June 2021

Living well with kidney disease by patient and care-partner empowerment: Kidney health for everyone everywhere.

Nefrologia 2021 Mar-Apr;41(2):95-101

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness programme for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programmes, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.nefroe.2021.05.002DOI Listing
December 2020

Kidney transplant recipient perspectives on telehealth during the COVID-19 pandemic.

Transpl Int 2021 Jun 11. Epub 2021 Jun 11.

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

The COVID-19 pandemic has challenged the delivery of health services. Telehealth allows delivery of care without in-person contacts and minimizes the risk of vial transmission. We aimed to describe the perspectives of kidney transplant recipients on the benefits, challenges, and risks of telehealth. We conducted five online focus groups with 34 kidney transplant recipients who had experienced a telehealth appointment. Transcripts were thematically analyzed. We identified five themes: minimizing burden (convenient and easy, efficiency of appointments, reducing exposure to risk, limiting work disruptions, and alleviating financial burden); attuning to individual context (depending on stability of health, respect patient choice of care, and ensuring a conducive environment); protecting personal connection and trust (requires established rapport with clinicians, hampering honest conversations, diminished attentiveness without incidental interactions, reassurance of follow-up, and missed opportunity to share lived experience); empowerment and readiness (increased responsibility for self-management, confidence in physical assessment, mental preparedness, and forced independence); navigating technical challenges (interrupted communication, new and daunting technologies, and cognizant of patient digital literacy). Telehealth is convenient and minimizes time, financial, and overall treatment burden. Telehealth should ideally be available after the pandemic, be provided by a trusted nephrologist and supported with resources to help patients prepare for appointments.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/tri.13934DOI Listing
June 2021

Patient and caregiver perspectives on blood pressure in children with chronic kidney disease.

Nephrol Dial Transplant 2021 Jun 4. Epub 2021 Jun 4.

College of Medicine and Public Health, Flinders University, Adelaide, Australia.

Background: Over 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure, to inform patient-centered care.

Methods: Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology-Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey, and two consensus workshops. We analyzed responses from children with CKD (aged 8-21 years) and caregivers (of children aged 0-21 years) pertaining to blood pressure.

Results: Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms, expected links with CKD); confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning need for prophylactic intervention, frustrated by inconsistent messages, struggling with technical skills in measurement); enabling monitoring and maintaining health (gauging wellbeing, preventing vascular complications); debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless, limiting life activities); and burden of medications (overwhelmed by quantity of tablets, distress from unexpected side effects).

Conclusions: For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure, and minimizing symptoms and treatment burden, may improve outcomes in children with CKD.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1093/ndt/gfab194DOI Listing
June 2021

Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.

PLoS One 2021 27;16(5):e0252479. Epub 2021 May 27.

Australasian Kidney Trials Network, University of Queensland, Brisbane, QLD, Australia.

Pain is a common symptom in people with autosomal dominant polycystic kidney disease (ADPKD), but it is assessed and reported inconsistently in research, and the validity of the measures remain uncertain. The aim of this study was to identify the characteristics, content, and psychometric properties of measures for pain used in ADPKD. We conducted a systematic review including all trials and observational studies that reported pain in people with ADPKD. Items from all measures were categorized into content and measurement dimensions of pain. We assessed the general characteristics and psychometric properties of all measures. 118 studies, we identified 26 measures: 12 (46%) measures were developed for a non-ADPKD population, 1 (4%) for chronic kidney disease, 2 (8%) for polycystic liver disease and 11 (42%) specifically for ADPKD. Ten anatomical sites were included, with the lower back the most common (10 measures [39%]), four measurement dimensions (intensity (23 [88%]), frequency (3 [12%]), temporality (2 [8%]), and sensory (21 [81%]), two pain types, nociceptive including visceral (15 [58%]) and somatic (5 [20%]), and neuropathic (2 [8%]), and twelve impact dimensions, where the most frequent was work (5 [31%]). The validation data for the measures were variable and only the ADPKD Impact Scale reported all psychometric domains. The measures for pain in ADPKD varied in terms of content and length, and most had not been validated in ADPKD. A standardized psychometrically robust measure that captures patient-important dimensions of pain is needed to evaluate and manage this debilitating complication of ADPKD.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0252479PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8158964PMC
May 2021

[Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere].

Arch Argent Pediatr 2021 06;119(3):213

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.5546/aap.2021.eng.213DOI Listing
June 2021

A Systematic Review of Scope and Consistency of Outcome Measures for Physical Fitness in Chronic Kidney Disease Trials.

Kidney Int Rep 2021 May 13;6(5):1280-1288. Epub 2021 Feb 13.

Department of Nephrology, Princess Alexandra Hospital, Woolloongabba, Australia.

Introduction: Impaired physical fitness is prevalent in people with chronic kidney disease (CKD), associating with an increased risk of mortality, falls, and hospitalization. A plethora of physical fitness outcomes have been reported in randomized trials. This study aimed to assess the scope and consistency of physical fitness outcomes and outcome measures reported in trials in CKD.

Methods: A systematic review of randomized trials reporting physical fitness outcomes in adults with CKD (not requiring kidney replacement therapy) receiving hemodialysis (HD) or peritoneal dialysis and kidney transplant recipients was conducted. Studies were identified from MEDLINE, Embase, and the Cochrane Library from 2000 to 2019. The scope, frequency, and characteristics of outcome measures were categorized and analyzed.

Results: From 111 trials, 87 tests/measurements were used to evaluate 30 outcomes measures that reported on 23 outcomes, categorized into five domains of physical fitness: neuromuscular fitness (reported in 76% of trials), exercise capacity (64%), physiological-metabolic (49%), body composition (36%), and cardiorespiratory fitness (30%). Neuromuscular fitness was examined by 37 tests/measurements including the physical function component of questionnaires (27%), one-repetition maximum (9%), and hand-grip strength (9%). Outcome measures were assessed by lab-based (58% of all trials), field-based (31%), and patient-reported measures (11%), and commonly evaluated at 12 (30%), 26 (23%) and 52 weeks (10%), respectively.

Conclusion: There is large heterogeneity in the reporting of physical fitness outcomes, with inconsistencies particularly in the definitions of outcome measures. Standardization in the assessment of physical fitness will likely improve the comparability of trial outcomes and enhance clinical recommendations.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.ekir.2021.02.010DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8116757PMC
May 2021

A working partnership: A review of shared decision-making in nephrology.

Nephrology (Carlton) 2021 May 19. Epub 2021 May 19.

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

Patients with chronic kidney disease are required to make difficult decisions, negotiating between the risks, burdens and benefits for any proposed course. This process can be extremely challenging, since these decisions involve inherent risks, which can impact on survival and quality of life. Shared decision-making offers a patient-centred approach in partnering with patients to make decisions about their treatment, which reflect their values and preferences. Shared decision-making can improve patient preparedness, motivation, satisfaction, and adherence to the treatment or decision agreed upon. In this review article, we outline the key principles of shared decision-making, and provide a framework with communication strategies to facilitate shared decision-making. We highlight the broad range and context of decisions faced by patients in several areas of nephrology care and discuss patient-important outcomes, priorities and motivations that underpin their decision-making. Preserving patient autonomy through shared decision-making ensures close consideration of patient preferences to enhance satisfaction with the decision reached and optimize outcomes important to patients.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/nep.13902DOI Listing
May 2021

Patient Perspectives on Outcome Domains of Medication Adherence Trials in Inflammatory Arthritis: An International OMERACT Focus Group Study.

J Rheumatol 2021 May 15. Epub 2021 May 15.

This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). C.L. Bekker, PhD, Radboud University Medical Centre, Research Institute for Health Sciences, Nijmegen, the Netherlands; S. Bossina, MSc, Department of Rheumatology, Liverpool Hospital, Sydney, Australia; M.A. de Vera, Assistant Professor, PhD, Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, and Arthritis Research Canada, Richmond, British Columbia, Canada; S.J. Bartlett, Professor, PhD, Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Québec, Canada, and Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; M. de Wit, PhD, OMERACT Patient Research Partner, the Netherlands; L. March, Professor, PhD, Institute of Bone and Joint Research, Kolling Institute of Medical Research, and Department of Rheumatology, Royal North Shore Hospital, and Northern Clinical School, The University of Sydney, Sydney, Australia; B. Shea, PhD, Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; V. Evans, Adjunct Assistant Professor, PhD, BOptom, Faculty of Health, University of Canberra, Canberra, Australia; D. Richards, PhD, Five02 Labs Inc., and Canadian Arthritis Patient Alliance, Toronto, Ontario, Canada; A. Tong, Professor, PhD, Centre for Kidney Research, The Children's Hospital at Westmead, and Sydney School of Public Health, The University of Sydney, Sydney, Australia; P. Tugwell, Professor, MD, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; K. Tymms, Associate Professor, MBBS, FRACP, College of Health and Medicine, Australian National University, and Department of Rheumatology, Canberra Hospital, Canberra, Australia; M. Scholte-Voshaar, MSc, OMERACT Patient Research Partner, and University of Twente, Enschede, the Netherlands; A. Kelly, Clinical Associate Lecturer, MBBS, FRACP, Department of Rheumatology, Liverpool Hospital, Sydney, Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, College of Health and Medicine, Australian National University, Canberra, and South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, Australia; B.J. van den Bemt, Professor, PharmD, Radboud University Medical Centre, Research Institute for Health Sciences, and Sint Maartenskliniek, Nijmegen, the Netherlands. The authors declare no conflicts of interest relevant to this article. Address correspondence Dr. C.L. Bekker, Department of Pharmacy, Radboud University Medical Centre, Research Institute for Health Sciences, Nijmegen, the Netherlands. Email: Accepted for publication May 10, 2021.

Objective: To describe the perspectives of patients with inflammatory arthritis (IA) on outcome domains of trials evaluating medication adherence interventions.

Methods: Adult patients (≥ 18 yrs) with IA taking disease-modifying antirheumatic drugs from centers across Australia, Canada, and the Netherlands participated in 6 focus groups to discuss outcome domains that they consider important when participating in medication adherence trials. We analyzed the transcripts using inductive thematic analysis.

Results: Of the 38 participants, 23 (61%) had rheumatoid arthritis and 21 (55%) were female. The mean age was 57.3 ± (SD 15.0) years. Improved outcome domains that patients wanted from participating in an adherence trial were categorized into 5 types: medication adherence, adherence-related factors (supporting adherence; e.g., medication knowledge), pathophysiology (e.g., physical functioning), life impact (e.g., ability to work), and economic impact (e.g., productivity loss). Three overarching themes reflecting why these outcome domains matter to patients were identified: how taking medications could improve patients' emotional and physical fitness to maintain their social function; how improving knowledge and confidence in self-management increases patients' trust and motivation to take medications as agreed with minimal risk of harms; and how respect and reassurance, reflecting health care that values patients' opinions and is sensitive to patients' individual goals, could improve medication-taking behavior.

Conclusion: Patients value various outcome domains related to their overall well-being, confidence in medication use, and patient-healthcare provider relationships to be evaluated in future adherence trials.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.3899/jrheum.201568DOI Listing
May 2021

The measurement properties of tests and tools used in cystic fibrosis studies: a systematic review.

Eur Respir Rev 2021 Jun 11;30(160). Epub 2021 May 11.

Sydney School of Public Health, The University of Sydney, Sydney, Australia.

There is no consensus on how best to measure responses to interventions among children and adults with cystic fibrosis (CF). We have systematically reviewed and summarised the characteristics and measurement properties of tests and tools that have been used to capture outcomes in studies among people with CF, including their reliability, validity and responsiveness. This review is intended to guide researchers when selecting tests or tools for measuring treatment effects in CF trials. A consensus set of these tests and tools could improve consistency in how outcomes are captured and thereby facilitate comparisons and synthesis of evidence across studies.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1183/16000617.0354-2020DOI Listing
June 2021

"A good death but there was all this tension around"- perspectives of residential managers on the experience of delivering end of life care for people living with dementia.

BMC Geriatr 2021 05 12;21(1):306. Epub 2021 May 12.

Centre for Learning & Research in Palliative Care, HammondCare, Greenwich Hospital, Sydney, Australia.

Background: End of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia.

Methods: Focus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis.

Results: 20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding.

Conclusion: Aged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident's terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1186/s12877-021-02241-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8117498PMC
May 2021

Development of an international Delphi survey to establish core outcome domains for trials in adults with glomerular disease.

Kidney Int 2021 May 5. Epub 2021 May 5.

Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia; Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia.

Outcomes relevant to treatment decision-making are inconsistently reported in trials involving glomerular disease. Here, we sought to establish a consensus-derived set of critically important outcomes designed to be reported in all future trials by using an online, international two-round Delphi survey in English. To develop this, patients with glomerular disease, caregivers and health professionals aged 18 years and older rated the importance of outcomes using a Likert scale and a Best-Worst scale. The absolute and relative importance was assessed and comments were analyzed thematically. Of 1198 participants who completed Round 1, 734 were patients/caregivers while 464 were health care professionals from 59 countries. Of 700 participants that completed Round 2, 412 were patients/caregivers and 288 were health care professionals. Need for dialysis or transplant, kidney function, death, cardiovascular disease, remission-relapse and life participation were the most important outcomes to patients/caregivers and health professionals. Patients/caregivers rated patient-reported outcomes higher while health care professionals rated hospitalization, death and remission/relapse higher. Four themes explained the reasons for their priorities: confronting death and compounded suffering, focusing on specific targets in glomerular disease, preserving meaning in life, and fostering self-management. Thus, consistent reporting of these critically important outcomes in all trials involving glomerular disease is hoped to improve patient-centered decision-making.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.kint.2021.04.027DOI Listing
May 2021

Qualitative research methods and its application in nephrology.

Nephrology (Carlton) 2021 May 5. Epub 2021 May 5.

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

Chronic kidney disease is associated with an increased risk of mortality, comorbidities and life-threatening complications. Invasive treatments including dialysis or transplantation, complex pharmacological therapies, dietary restrictions and the ongoing need to attend follow-up appointments can place a substantial treatment burden on patients and carers and impair quality of life. This highlights the need for care that is responsive to the needs of patients and involves them in decision-making to achieve the most appropriate healthcare outcomes. Shared decision-making and collaborative approaches to care require a deep awareness of the lived experiences and goals of patients. Qualitative research methods can provide insights into patients' experiences, values and priorities and inform practice and policy by uncovering their preferences for care. Qualitative methods are increasingly being used in standalone projects or in mixed methods studies (complementing quantitative studies) to make valuable contributions to patient-centred research. Patient-centred care, collaborations between patient and care provider, and shared decision-making that integrates with the patient's goals are central to quality healthcare. The efficacy of qualitative research lies in its ability to elicit patients' perspectives, values, priorities and goals that underpin shared decision making and care. This article discusses examples of how qualitative research has informed practice and policy in nephrology, provides a summary of qualitative research methods and outlines a guide on how to appraise, interpret and apply qualitative data.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/nep.13888DOI Listing
May 2021

Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere.

Braz J Med Biol Res 2021 5;54(6):e11098. Epub 2021 Apr 5.

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1590/1414-431X202011098DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8087281PMC
May 2021

Frontline interdisciplinary clinician perspectives on caring for patients with COVID-19: a qualitative study.

BMJ Open 2021 05 4;11(5):e048712. Epub 2021 May 4.

Division of Hospital Medicine, Denver Health, Denver, Colorado, USA.

Objective: To describe the drivers of distress and motivations faced by interdisciplinary clinicians who were on the frontline caring for patients with COVID-19.

Design: 50 semistructured interviews. Transcripts were analysed using qualitative thematic analysis.

Setting: A safety-net hospital in Denver, Colorado.

Participants: Interdisciplinary frontline clinicians including physicians, advance practice providers, nurses, respiratory therapists and paramedics providing inpatient hospital care to patients hospitalised for COVID-19.

Results: Fifty clinicians (32 women and 18 men) participated. Five themes with respective subthemes (in parentheses) were identified: depersonalisation and barriers to care (impeding rapport and compassion, focusing on infection risk at the expense of high-quality care, grief from witnessing patients suffer in isolation), powerless in uncertainty (inescapable awareness of personal risk, therapeutic doubt in a void of evidence, confronting ethical dilemmas, struggling with dynamic and unfamiliar challenges), overwhelmed and exhausted (burden of personal protective equipment (PPE), information overload and confusion, overstretched by additional responsibilities at work, compounded by personal life stressors, feeling vulnerable and dispensable, compassion fatigue, distress from the disproportionate impact on socially oppressed communities), bolstering morale and confidence (motivated by community and family support, equipped with data), and driven by moral duty (responsibility to patient care and community, collegial solidarity and collaboration, contributing to the greater good).

Conclusion: Frontline clinicians reported distress due to the challenges of PPE, uncertainty and powerlessness, new responsibilities at work and home, losing control of their schedules, grief from witnessing patients suffer in isolation and witnessing healthcare disparities exacerbated by this pandemic. Clinicians feel supported by their colleagues, families, and community and were driven by a sense of moral duty. Healthcare system should adopt strategies to minimise distress faced by interdisciplinary clinicians on the frontline of COVID-19.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1136/bmjopen-2021-048712DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8098296PMC
May 2021

Outcome measures for technique survival reported in peritoneal dialysis: A systematic review.

Perit Dial Int 2021 Apr 21:896860821989874. Epub 2021 Apr 21.

School of Medicine, 4212Keele University, Newcastle, UK.

Background: Peritoneal dialysis (PD) technique survival is an important outcome for patients, caregivers and health professionals, however, the definition and measures used for technique survival vary. We aimed to assess the scope and consistency of definitions and measures used for technique survival in studies of patients receiving PD.

Method: MEDLINE, EMBASE and CENTRAL databases were searched for randomised controlled studies (RCTs) conducted in patients receiving PD reporting technique survival as an outcome between database inception and December 2019. The definition and measures used were extracted and independently assessed by two reviewers.

Results: We included 25 RCTs with a total of 3645 participants (41-371 per trial) and follow up ranging from 6 weeks to 4 years. Terminology used included 'technique survival' (10 studies), 'transfer to haemodialysis (HD)' (8 studies) and 'technique failure' (7 studies) with 17 different definitions. In seven studies, it was unclear whether the definition included transfer to HD, death or transplantation and eight studies reported 'transfer to HD' without further definition regarding duration or other events. Of those remaining, five studies included death in their definition of a technique event, whereas death was censored in the other five. The duration of HD necessary to qualify as an event was reported in only four (16%) studies. Of the 14 studies reporting causes of an event, all used a different list of causes.

Conclusion: There is substantial heterogeneity in how PD technique survival is defined and measured, likely contributing to considerable variability in reported rates. Standardised measures for reporting technique survival in PD studies are required to improve comparability.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/0896860821989874DOI Listing
April 2021

Patients' experiences and perspectives of a mobile phone text messaging intervention to improve dietary behaviours in haemodialysis.

Nutr Diet 2021 Apr 18. Epub 2021 Apr 18.

Faculty of Medicine and Health, Sydney Medical School, Westmead Clinical School, The University of Sydney, Sydney, New South Wales, Australia.

Aim: Dietary requirements for people on haemodialysis are complex and often poorly adhered to. Mobile phone text messaging offers a simple strategy to enhance current nutritional care. KIDNEYTEXT was a 6-month pilot randomised controlled trial that evaluated the feasibility and impact of mobile phone text messages to alter participants' dietary behaviours. The aim of this study was to elicit the perspectives of people on haemodialysis regarding acceptability of mobile phone text messages targeting dietary behaviours.

Methods: Semi-structured interviews were conducted with participants in the intervention arm of the KIDNEYTEXT study. Participants were purposively sampled and interviews were conducted in-person or over the phone. Transcripts were thematically analysed using principles of grounded theory.

Results: Interviews were conducted with 25 participants. Four major themes were identified: building awareness (reinforcement of information, simple and comprehensible, guiding choices, accessible information enhancing motivation, gaining skills in management), valuing care (boosting self-esteem, in-person care bolstered by reminders), activating change (adjusting lifestyle, gaining control of electrolytes and fluid, striving to improve overall health), waning attention and motivation (lack of personalisation limiting change, maintaining the status quo, reverting back to old habits).

Conclusions: Participants perceived that the KIDNEYTEXT intervention enabled participants to build on their knowledge through the dissemination of simple and actionable content. Participants appreciated frequent reminders of how to improve their diet and felt that this increased contact motivated them to alter some dietary behaviours. Future trials should consider strategies to enhance personalisation to further motivate dietary change.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/1747-0080.12667DOI Listing
April 2021

Perspectives of solid organ transplant recipients on medicine-taking: Systematic review of qualitative studies.

Am J Transplant 2021 Apr 18. Epub 2021 Apr 18.

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.

Medicine-taking among transplant recipients is a complex and ubiquitous task with significant impacts on outcomes. This study aimed to describe the perspectives and experiences of medicine-taking in adult solid organ transplant recipients. Electronic databases were searched to July 2020, and thematic synthesis was used to analyze the data. From 119 studies (n = 2901), we identified six themes: threats to identity and ambitions (impaired self-image, restricting goals and roles, loss of financial independence); navigating through uncertainty and distrust (lacking tangible/perceptible benefits, unprepared for side effects, isolation in decision-making); alleviating treatment burdens (establishing and mastering routines, counteracting side effects, preparing for the unexpected); gaining and seeking confidence (clarity with knowledge, reassurance through collective experiences, focusing on the future outlook); recalibrating to a new normal posttransplant (adjusting to ongoing dependence on medications, in both states of illness and health, unfulfilled expectations); and preserving graft survival (maintaining the ability to participate in life, avoiding rejection, enacting a social responsibility of giving back). Transplant recipients take medications to preserve graft function, but dependence on medications jeopardizes their sense of normality. Interventions supporting the adaptation to medicine-taking and addressing treatment burdens may improve patient satisfaction and capacities to take medications for improved outcomes.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/ajt.16613DOI Listing
April 2021

Living Well With Kidney Disease by Patient and Care-Partner Empowerment: Kidney Health for Everyone Everywhere.

Kidney Med 2021 Mar-Apr;3(2):153-158. Epub 2021 Feb 15.

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care partners. Empowering patients and their care partners, including family members and friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable increased life participation. There is a need to broaden the focus on living well with kidney disease and reengagement in life, including emphasis on the patient being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education about and awareness of the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labeling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care partners should feel supported to live well through concerted efforts by kidney care communities, including during pandemics. In the overall wellness program for patients with kidney disease, the need for prevention should be reiterated. Early detection with prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures across populations, professionals, and policy makers, applicable to both developed and developing countries.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.xkme.2021.01.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8039417PMC
February 2021

Influenza vaccination uptake and factors influencing vaccination decision among patients with chronic kidney or liver disease.

PLoS One 2021 13;16(4):e0249785. Epub 2021 Apr 13.

Division of Gastroenterology and Hepatology, Department of Medicine III, Medical University of Vienna, Vienna, Austria.

Introduction: Seasonal influenza is a major global health problem causing substantial morbidity and health care costs. Yet, in many countries, the rates of influenza vaccination remain low. Chronic kidney or liver diseases (CKLD) predispose patients to severe influenza infections, but data on vaccination acceptance and status is limited in this risk population. We investigated the influenza vaccination awareness considering sociodemographic factors in CKLD patients.

Patients And Methods: This cross-sectional, questionnaire-based study recruited CKLD patients managed at three Viennese tertiary care centers between July and October 2020. CKLD was defined as chronic kidney- (all stages) or compensated/decompensated liver disease, including kidney/liver transplant recipients. Questionnaires assessed sociodemographic and transplant- associated parameters, patients vaccination status and the individuals self-perceived risks of infection and associated complications.

Results: In total 516 patients (38.1% female, mean age 56.4 years) were included. 43.9% of patients declared their willingness to be vaccinated in the winter season 2020/2021, compared to 25.4% in 2019/2020 and 27.3% in 2016-2018. Vaccination uptake was associated with the self-perceived risks of infection (OR: 2.8 (95%CI: 1.8-4.5), p<0.001) and associated complications (OR: 3.8 (95%CI: 2.3-6.3), p<0.001) as well as with previously received influenza vaccination (2019/2020: OR 17.1 (95%CI: 9.5-30.7), p<0.001; season 2016-2018: OR 8.9 (95%CI: 5.5-14.5), p<0.001). Most frequent reasons for not planning vaccination were fear of a) graft injury (33.3%), b) complications after vaccination (32.4%) and c) vaccine inefficiency (15.0%).

Conclusion: While influenza vaccination willingness in patients with CKLD is increasing in the 2020/2021 season, vaccination rates may still remain <50%. Novel co-operations with primary health care, active vaccination surveillance and financial reimbursement may substantially improve vaccination rates in high-risk CKLD patients.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0249785PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8043408PMC
April 2021

Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere.

J Bras Nefrol 2021 Apr-Jun;43(2):142-149

The University of Sydney, Sydney School of Public Health, Sydney, NSW, Australia.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1590/2175-8239-JBN-2020-0241DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8257290PMC
November 2020