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• W2565865622 abstract "Related Article, p. 97 Related Article, p. 97 Dialysis is the most common treatment for chronic kidney failure, an increasingly prevalent condition. Dialysis imposes an enormous burden on patients and their families. Despite concerted efforts by clinicians and a number of clinical trials conducted in dialysis, clinical outcomes remain poor, with very high rates of morbidity and mortality. Critically, trials infrequently measure many outcomes that are most important to patients and their families, thereby potentially limiting the relevance of study findings and potentially impeding implementation in clinical practice. In an effort to improve the relevance of trials conducted in hemodialysis, the initiative known as Standardised Outcomes in Nephrology-Haemodialysis (SONG-HD) aims to establish a core set of outcomes for hemodialysis trials that reflect items of importance to all members of the dialysis community. In this issue of AJKD, Tong et al1Tong A. Manns B. Hemmelgarn B. et al.SONG-HD InvestigatorsEstablishing core outcome domains in hemodialysis: report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop.Am J Kidney Dis. 2017; 69: 97-107Abstract Full Text Full Text PDF PubMed Scopus (123) Google Scholar summarize results from the consensus workshop that concluded the SONG-HD initiative. SONG-HD consisted of 5 phases: (1) a systematic review of research priority setting in kidney disease,2Tong A. Chando S. Crowe S. et al.Research priority setting in kidney disease: a systematic review.Am J Kidney Dis. 2015; 65: 674-683Abstract Full Text Full Text PDF PubMed Scopus (76) Google Scholar (2) focus groups with hemodialysis patients and their care partners to identify and rank potential outcomes,3Urquhart-Secord R. Craig J.C. Hemmelgarn B. et al.Patient and caregiver priorities for outcomes in hemodialysis: an international nominal group technique study.Am J Kidney Dis. 2016; 68: 444-454Abstract Full Text Full Text PDF PubMed Scopus (179) Google Scholar (3) semi-structured interviews with stakeholders to further explore these outcomes, (4) a 3-round Delphi survey to distil the 20 most meaningful outcomes based on the input of both patients/caregivers (N = 202) and health professionals (N = 979; Table 14Rosenbloom D. The SONG-HD initiative: it's not the same old song, and it's got a very different meaning. http://homedialysis.org/news-and-research/blog/129-the-song-hd-initiative-it-s-not-the-same-old-song-and-it-s-got-a-very-different-meaning. Accessed October 4, 2016.Google Scholar), and (5) an international consensus workshop to review and discuss the proposed core outcomes. Although the outcomes and their ranking were not explicitly reported by Tong et al, at the end of the workshop, the 55 workshop attendees had identified several challenges and recommended requirements for establishing core outcomes.Table 1Outcomes of Greatest Importance to Patients/Caregivers and Health ProfessionalsRankPatients/CaregiversHealth ProfessionalsaIncludes nephrologists, surgeons, nursing and allied health professionals, researchers, policy makers, and industry.1Dialysis adequacyVascular access problems2Ability to travelDeath/mortality3Vascular access problemsCardiovascular disease4FatigueDecrease in blood pressure5Dialysis-free timeAbility to work6Washed out postdialysisHospitalization7Cardiovascular diseaseFatigue8AnemiaInfection/immunity9Ability to workDialysis adequacy10Blood pressureBlood pressureNote: From the third round of the Delphi consensus survey, by stakeholder group. Abstracted from a report by Rosenbloom.4Rosenbloom D. The SONG-HD initiative: it's not the same old song, and it's got a very different meaning. http://homedialysis.org/news-and-research/blog/129-the-song-hd-initiative-it-s-not-the-same-old-song-and-it-s-got-a-very-different-meaning. Accessed October 4, 2016.Google Scholara Includes nephrologists, surgeons, nursing and allied health professionals, researchers, policy makers, and industry. Open table in a new tab Note: From the third round of the Delphi consensus survey, by stakeholder group. Abstracted from a report by Rosenbloom.4Rosenbloom D. The SONG-HD initiative: it's not the same old song, and it's got a very different meaning. http://homedialysis.org/news-and-research/blog/129-the-song-hd-initiative-it-s-not-the-same-old-song-and-it-s-got-a-very-different-meaning. Accessed October 4, 2016.Google Scholar The methodology implemented to develop the final list is a major strength of this initiative because it is based on the widely used and validated OMERACT (Outcome Measures in Rheumatology) methodological framework,5de Wit M. Abma T. Koelewijn-van Loon M. Collins S. Kirwan J. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences.BMJ Open. 2013; 3: e002241Google Scholar a methodology cited by the Core Outcome Measures in Effectiveness Trials (COMET) Initiative for the development of core outcome sets.6Gargon E. The COMET (Core Outcome Measures in Effectiveness Trials) Initiative.Maturitas. 2016; 91: 91-92Abstract Full Text Full Text PDF PubMed Scopus (15) Google Scholar One limitation is that only 8 (15%) participants in the workshop were patients or caregivers, and only one was from outside the United States. Although this was justified by cost considerations, the authors fail to acknowledge how the under-representation of this key stakeholder group may have affected their results. For example, more quotations are included from nonpatient than from patient participants. Finally, patients/caregivers who attended the workshop may have been selected based on prior involvement with the research community, which may limit the applicability of the findings. In recent years, patient engagement has been a growing area of interest in nephrology, in both clinical and research settings, and the existing literature supports its benefits at various steps in the research process, from identifying and setting research priorities7World Health Organization. Preparing a health care workforce for the 21st century: the challenge of chronic conditions. 2005. http://www.who.int/chp/knowledge/publications/workforce_report.pdf; Accessed September 16, 2016.Google Scholar, 8Abma T.A. Broerse J.E. Patient participation as dialogue: setting research agendas.Health Expect. 2010; 13: 160-173Crossref PubMed Scopus (162) Google Scholar, 9Caron-Flinterman J.F. Broerse J.E. Teerling J. Bunders J.F. Patients' priorities concerning health research: the case of asthma and COPD research in the Netherlands.Health Expect. 2005; 8: 253-263Crossref PubMed Scopus (81) Google Scholar, 10Tong A. Crowe S. Chando S. et al.Research priorities in CKD: report of a National Workshop Conducted in Australia.Am J Kidney Dis. 2015; 66: 212-222Abstract Full Text Full Text PDF PubMed Scopus (66) Google Scholar to research implementation and policy making.11Carman K.L. Dardess P. Maurer M. et al.Patient and family engagement: a framework for understanding the elements and developing interventions and policies.Health Aff (Millwood). 2013; 32: 223-231Crossref PubMed Scopus (947) Google Scholar A fundamental premise of the SONG-HD, which was also highlighted during the workshop, is the need for patients' involvement in establishing health care delivery practices and policy,12Porter A.C. Fitzgibbon M.L. Fischer M.J. et al.Rationale and design of a patient-centered medical home intervention for patients with end-stage renal disease on hemodialysis.Contemp Clin Trials. 2015; 42: 1-8Abstract Full Text Full Text PDF PubMed Scopus (16) Google Scholar as well as in developing and conducting research.13Gooberman-Hill R. Burston A. Clark E. et al.Involving patients in research: considering good practice.Musculoskel Care. 2013; 11: 187-190Crossref Scopus (45) Google Scholar For example, in a recent expert consensus meeting, representatives of renal registries across Europe described optimal practices for the collection of patient-reported outcomes or experiences measurements in routine clinical practice.14Breckenridge K. Bekker H.L. Gibbons E. et al.How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting.Nephrol Dial Transplant. 2015; 30: 1605-1614Crossref PubMed Scopus (94) Google Scholar Engagement of patients in research meanwhile is a paradigm shift that is gaining growing acceptance in the nephrology community. If the objective of research is to have a positive impact patients’ lives, it makes sense that patients should play a major role in identifying research priorities and should participate in the research process. However, as with any major shift, challenges arise as we face this new model. Investigators and funding agencies have traditionally identified research topics largely based on intellectual or strategic interests and may be resistant to the notion that individuals without scientific training or expertise can make meaningful contributions. Meanwhile, patients may not be empowered or may be unaware of appropriate mechanisms to provide their unique perspectives and insight to the research process. This leads to a fundamental question for investigators conducting clinical research: whether we are willing to consider patients as partners of equal standing, with complementary skills and lived expertise, rather than as participants in yet another researcher-led process. Even for researchers willing to embark on such equitable partnering, the lack of training to communicate scientific concepts in easily accessible terms might create challenges for garnering support from partners for the rigorous scientific methodology that is required to ensure the strongest level of evidence. In the United States, a series of efforts is under way to include patient perspectives along the continuum of clinical products development, as well as in clinical research.15US Food and Drug Administration, US Department of Health and Human Services. Patient-focused drug development: disease area meetings planned for fiscal years 2013-2017. http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm347317.htm. Accessed September 26, 2016.Google Scholar, 16US Department of Health and Human Services, Food and Drug Administration. Patient preference information – review in premarket approval applications, humanitarian device exemption applications, and de novo requests, and inclusion in decision summaries and device labeling. Guidance for industry, food and drug administration staff, and other stakeholders. http://www.fda.gov/downloads/MedicalDevices/DeviceRegulationandGuidance/GuidanceDocuments/UCM446680.pdf. Accessed September 16, 2016.Google Scholar The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 by the Affordable Care Act to help “people make informed health care decisions, and improve health care delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader health care community.”17PCORI. About us. http://www.pcori.org/about-us Accessed October 5, 2016.Google Scholar PCORI has already supported various studies and initiatives centered around the patient perspective in kidney disease.18Cukor D. Cohen L.M. Cope E.L. et al.Patient and other stakeholder engagement in Patient-Centered Outcomes Research Institute funded studies of patients with kidney diseases.Clin J Am Soc Nephrol. 2016; 11: 1703-1712Crossref PubMed Scopus (44) Google Scholar In our experience with the PCORI-funded Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) study,19Dahlerus C. Quinn M. Messersmith E. et al.Patient perspectives on the choice of dialysis modality: results from the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) Study.Am J Kidney Dis. 2016; https://doi.org/10.1053/j.ajkd.2016.05.010Abstract Full Text Full Text PDF Scopus (76) Google Scholar stakeholder engagement through an Advisory Panel was key to the study success and to ensuring maximal relevance to patients and their families. Implementing basic relationship-building rules (trust, respect, and communication) resulted in a strong scientific partnership between traditional investigators and the EPOCH-RRT Advisory Panel. The Advisory Panel included exceptional individuals, several of whom had personal experience with dialysis, with incredible energy and enthusiasm for the opportunity to be engaged in the research process. Although they may not be representative of the “average” patient treated with in-center hemodialysis in the United States, their ability to identify and vocalize opportunities and challenges in clinical research from a patient perspective was a unique asset to the EPOCH-RRT study, enriching the research at hand and motivating new research hypotheses. Another example of PCORI-funded patient involvement in setting the research agenda is the NephCure Kidney Network. A multistakeholder initiative led by Arbor Research in partnership with NephCure Kidney International (Co-Principal Investigators are Elizabeth Cope and Lauren Lee), NephCure Kidney Network was developed as a patient-powered research network to accelerate high-impact research for patients with primary nephrotic syndrome. The active involvement of the patient perspective ensures a central role for patient participation in governing the network and its uses, including selection of research topics and partnering in the entire continuum of the research process, from protocol development to dissemination of findings. As attested by many investigators,18Cukor D. Cohen L.M. Cope E.L. et al.Patient and other stakeholder engagement in Patient-Centered Outcomes Research Institute funded studies of patients with kidney diseases.Clin J Am Soc Nephrol. 2016; 11: 1703-1712Crossref PubMed Scopus (44) Google Scholar although not free of challenges, successful implementation of patient-centered research is an extremely rewarding experience and ensures that the scientific question addresses the priorities of the target audiences for the outcomes of the research. “Nobody has ever asked me this [what matters to me] until now” observed a participant in EPOCH-RRT interviews: a sobering statement, but one that confirmed that the research project resonated with that patient. Our own experience, as well as reports from others in the nephrology community, attests the urgent need to increase the relevance of research for patients with kidney disease. The SONG-HD initiative, along with other ongoing efforts, will facilitate the role of stakeholders (especially patients) in setting priority topics and outcomes in nephrology studies. However, in order for studies to fully reflect their perspectives, strategies are needed to ensure that patients are also involved in study designs and conduct; we encourage the SONG investigators to consider this as natural next steps in their research. In sum, while the SONG-HD initiative is one of the promising early steps in increasing the relevance of clinical research for patients with kidney disease, the consensus workshop report also highlights the fact that we still have a way to go! Support: The DOPPS Program is supported by Amgen, Kyowa Hakko Kirin, AbbVie, Sanofi Renal, Baxter Healthcare, and Vifor Fresenius Medical Care Renal Pharma. Additional support for specific projects and countries is provided by Keryx Biopharmaceuticals, Merck Sharp & Dohme, Proteon Therapeutics, Relypsa, and F. Hoffmann-LaRoche; in Canada by Amgen, BHC Medical, Janssen, Takeda, and the Kidney Foundation of Canada (for logistics support); in Germany by Hexal, DGfN, Shire, and the WiNe Institute; and for PDOPPS in Japan by the Japanese Society for Peritoneal Dialysis (JSPD). All support is provided without restrictions on publications. Grants are made to Arbor Research Collaborative for Health and not to individual investigators. Financial Disclosure: Dr Tentori is a member of the AAKP Medical Advisory Board and has received the following: speaker received payments from Medscape, the University of Missouri, and the DSI Medical Director Meeting (topic: Recent trends from the DOPPS Study). Peer Review: Evaluated by Deputy Editor Weiner and Editor-in-Chief Levey. Establishing Core Outcome Domains in Hemodialysis: Report of the Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus WorkshopAmerican Journal of Kidney DiseasesVol. 69Issue 1PreviewEvidence-informed decision making in clinical care and policy in nephrology is undermined by trials that selectively report a large number of heterogeneous outcomes, many of which are not patient centered. The Standardized Outcomes in Nephrology−Hemodialysis (SONG-HD) Initiative convened an international consensus workshop on November 7, 2015, to discuss the identification and implementation of a potential core outcome set for all trials in hemodialysis. The purpose of this article is to report qualitative analyses of the workshop discussions, describing the key aspects to consider when establishing core outcomes in trials involving patients on hemodialysis therapy. Full-Text PDF" @default.
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• W2565865622 title "Increasing the Relevance of Clinical Research for Patients With Kidney Disease" @default.
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