Global kidney health 2017 and beyond: a roadmap for closing gaps in care, research, and policy

https://www.kidney-international.org/article/S2157-1716(15)32202-4/pdf

Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care

Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study

Treatment of Uremic Pruritus: A Systematic Review

Background Current research suggests that while patients are becoming more engaged across the health delivery spectrum, this involvement occurs most often at the pre-preparation stage to identify 'high-level' priorities in health ecosystem priority setting, and at the preparation phase for health research. Objective The purpose of this systematic rapid review of the literature is to describe the evidence that does exist in relation to patient and public engagement priority setting in both health ecosystem and health research. Data sources HealthStar (via OVID); CINAHL; Proquest Databases; and Scholar's Portal. Study eligibility criteria i) published in English; ii) published within the timeframe of 2007-Current (10 years) unless the report/article was formative in synthesizing key considerations of patient engagement in health ecosystem and health research priority setting; iii) conducted in Canada, the US, Europe, UK, Australia/New Zealand, or Scandinavian countries. Study appraisal and synthesis i) Is the research valid, sound, and applicable?; ii) what outcomes can we potentially expect if we implement the findings from this research?; iii) will the target population (i.e., health researchers and practitioners) be able to use this research?. A summary of findings from each of the respective processes was synthesized to highlight key information that would support decision-making for researchers when determining the best priority setting process to apply for their specific patient-oriented research. Results Seventy articles from the UK, US, Canada, Netherlands and Australia were selected for review. Results were organized into two tiers of public and patient engagement in prioritization: Tier 1-Deliberative and Tier 2-Consultative. Highly structured patient and public engagement planning activities include the James Lind Alliance Priority Setting Partnerships (UK), Dialogue Method (Netherlands), Global Evidence Mapping (Australia), and the Deep Inclusion Method/CHoosing All Together (US). Limitations The critical study limitations include challenges in comprehensively identifying the patient engagement literature for review, bias in article selection due to the identified scope, missed information due to a more limited use of exhaustive search strategies (e.g., in-depth hand searching), and the heterogeneity of reported study findings. Conclusion 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. The processes were robust, strategic and aimed to promote equity in patient voices. Key limitations identified a lack of evaluation data on the success and extent in which patients were engaged. Issues pertaining to feasibility of stakeholder engagement, coordination, communication and limited resources were also considered.

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Patient and public engagement in priority setting: A systematic rapid review of the literature.

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.

/pdf/setting-research-priorities-for-patients-on-or-nearing-4exfp972yg.pdf

Setting Research Priorities for Patients on or Nearing Dialysis

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 perspectiveof adultpatientsonornearingdialysis,theircaregivers,andthe healthcareprofessionalswhocarefor 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. Clin J Am Soc Nephrol 9: 1813–1821, 2014. doi: 10.2215/CJN.01610214

Brenda Toth

Papers

Setting Research Priorities for Patients on or Nearing Dialysis

Setting Research Priorities for Patients on or Nearing