Setting Research Priorities for Patients on or Nearing Dialysis
Braden J. Manns,Brenda R. Hemmelgarn,Erin Lillie,Sally Crowe P.G. Dip,Annette Cyr,Michael Gladish,Claire L. Large,Howard Silverman,Brenda Toth,Wim Wolfs,Andreas Laupacis,Andreas Laupacis +11 more
TLDR
The top 10 research uncertainties were identified, which included questions about enhanced communication among patients and providers, dialysis modality options, itching, access to kidney transplantation, heart health, dietary restrictions, depression, and vascular access, and can be used to guide researchers in designing future studies and inform health care funders.Abstract:
With increasing emphasis among health care providers and funders on patient-centered care, it follows that patients and their caregivers should be included when priorities for research are being established. This study sought to identify the most important unanswered questions about the management of kidney failure from the perspective of adult patients on or nearing dialysis, their caregivers, and the health care professionals who care for these patients. Research uncertainties were identified through a national Canadian survey of adult patients on or nearing dialysis, their caregivers, and health care professionals. Uncertainties were refined by a steering committee that included patients, caregivers, researchers, and clinicians to assemble a short-list of the top 30 uncertainties. Thirty-four people (11 patients; five caregivers; eight physicians; six nurses; and one social worker, pharmacist, physiotherapist, and dietitian each) from across Canada subsequently participated in a workshop to determine the top 10 research questions. In total, 1570 usable research uncertainties were received from 317 respondents to the survey. Among these, 259 unique uncertainties were identified; after ranking, these were reduced to a short-list of 30 uncertainties. During the in-person workshop, the top 10 research uncertainties were identified, which included questions about enhanced communication among patients and providers, dialysis modality options, itching, access to kidney transplantation, heart health, dietary restrictions, depression, and vascular access. These can be used alongside the results of other research priority–setting exercises to guide researchers in designing future studies and inform health care funders.read more
Citations
More filters
Journal ArticleDOI
Global kidney health 2017 and beyond: a roadmap for closing gaps in care, research, and policy
Adeera Levin,Marcello Tonelli,Joseph V. Bonventre,Josef Coresh,Jo Ann Donner,Agnes B. Fogo,Caroline S. Fox,Ron T. Gansevoort,Hiddo J.L. Heerspink,Meg Jardine,Bertram L. Kasiske,Anna Köttgen,Matthias Kretzler,Andrew S. Levey,Valerie A. Luyckx,Ravindra L. Mehta,Orson W. Moe,Gregorio T. Obrador,Neesh Pannu,Chirag R. Parikh,Vlado Perkovic,Carol A. Pollock,Peter Stenvinkel,Katherine R. Tuttle,David C. Wheeler,Kai-Uwe Eckardt +25 more
TL;DR: An action plan and performance framework based on ten themes to strengthen CKD surveillance, tackle major risk factors for CKD, and enhance understanding of the genetic causes of CKD is presented.
Journal ArticleDOI
Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care
Sara N. Davison,Adeera Levin,Alvin H. Moss,Vivekanand Jha,Vivekanand Jha,Edwina A. Brown,Frank Brennan,Fliss E M Murtagh,Saraladevi Naicker,Michael J. Germain,Donal O'Donoghue,Rachael L. Morton,Rachael L. Morton,Gregorio T. Obrador +13 more
TL;DR: The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis.
Journal ArticleDOI
Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study
Rachel Urquhart-Secord,Rachel Urquhart-Secord,Jonathan C. Craig,Jonathan C. Craig,Brenda R. Hemmelgarn,Helen Tam-Tham,Braden Manns,Martin Howell,Martin Howell,Kevan R. Polkinghorne,Peter G. Kerr,David Harris,Stephanie Thompson,Kara Schick-Makaroff,David C. Wheeler,Wim Van Biesen,Wolfgang C. Winkelmayer,David W. Johnson,David W. Johnson,Kirsten Howard,Nicole Evangelidis,Nicole Evangelidis,Allison Tong,Allison Tong +23 more
TL;DR: Patients tend to prioritize outcomes that are more relevant to their daily living and well-being, and researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials.
Journal ArticleDOI
Treatment of Uremic Pruritus: A Systematic Review
Elizabeth Simonsen,Paul Komenda,Blake Lerner,Nicole Askin,Clara Bohm,James Shaw,Navdeep Tangri,Claudio Rigatto +7 more
TL;DR: Despite the acknowledged importance of uremic pruritus to patients, with the exception of gabapentin, the current evidence for treatments is weak and large, simple, rigorous, multiarm RCTs of promising therapies are urgently needed.
Journal ArticleDOI
Patient and public engagement in priority setting: A systematic rapid review of the literature.
TL;DR: The four public and patient engagement priority setting processes identified were successful in setting priorities that are inclusive and objectively based, specific to the priorities of stakeholders engaged in the process.
References
More filters
Journal ArticleDOI
Crossing the Quality Chasm: A New Health System for the 21st Century
TL;DR: Analyzing health care organizations as complex systems, Crossing the Quality Chasm also documents the causes of the quality gap, identifies current practices that impede quality care, and explores how systems approaches can be used to implement change.
Journal Article
Medscape's response to the Institute of Medicine Report: Crossing the quality chasm: a new health system for the 21st century.
TL;DR: The U.S. health care delivery system does not provide consistent, highquality medical care to all people, and if the system cannot consistently deliver today’s science and technology, it is even less prepared to respond to the extraordinary advances that surely will emerge during the coming decades.
Journal ArticleDOI
The number, quality, and coverage of randomized controlled trials in nephrology.
TL;DR: Overall the quality of RCT reporting in nephrology is low and has not improved over the past 30 yr with unclear allocation concealment, lack of reported blinding of outcome assessors, and failure to perform "intention-to-treat analysis" particularly frequent.
The Number, Quality, and Coverage of Randomized Controlled Trials in Nephrology
TL;DR: In this paper, the authors evaluated the number, quality, and coverage of randomized controlled trials (RCT) in nephrology and found that the quality of RCT reporting has not improved over the past 30 years with unclear allocation concealment (89%), lack of reported blinding of outcome assessors (92%), and failure to perform?intention-to-treat analysis? particularly frequent.
Journal ArticleDOI
Preference-based quality of life of patients on renal replacement therapy: a systematic review and meta-analysis.
TL;DR: Utilities of hemodialysis, peritoneal dialysis, and renal transplantation patients, to compare utilities between these patient groups, and to obtain estimates for quality-of-life adjustment in economic analyses were summarized.