AAKP is asking dialysis patients to take a survey on their experience with and concerns about COVID-19. AAKP’s introduction follows:
“AAKP works closely and constructively with Federal and state officials on health issues of concern to both the general public and those who are immunocompromised – like kidney patients. As we have in the past with flu and vaccines, we are interested in relaying your insights about the Coronavirus to relevant officials so that their actions and communications are better informed and responsive to your concerns. As a dialysis patient, has the Coronavirus impacted your thinking or behavior? What communication, if any, have you, as a dialysis patient, received with your healthcare team and/or dialysis facility? TAKE A FEW MINUTES, TELL US YOUR THOUGHTS! AAKP will share insights gleaned from you with the brave medical and scientific professionals fighting the Coronavirus! … Answers and any comments provided will not be attributed to any individual – the FLASH SURVEY is completely anonymous.”
Find the survey at https://www.surveymonkey.com/r/DialysisandCoronavirus. They do not indicate how long the survey will be available.
In December CMS proposed revisions to Organ Procurement Organization Performance Measures for Kidney Donation Rate and Transplant Rate, and to OPO monitoring and benchmarking. The revised measures aim to increase the number of Kidney Transplants by about 5,000 per year. The revisions are described in the Fact Sheet at https://www.cms.gov/newsroom/fact-sheets/organ-procurement-organization-opo-conditions-coverage-proposed-rule-revisions-outcome-measures-opos. Public Comment is due by February 21, 2020. The Proposed Rule is published in the Federal Register at https://www.federalregister.gov/documents/2019/12/23/2019-27418/medicare-and-medicaid-programs-organ-procurement-organizations-conditions-for-coverage-revisions-to.
The University of Michigan Kidney Epidemiology and Cost Center, under contract to CMS, is seeking dialysis patient and facility staff volunteers to provide feedback, via a half-hour phone call, on a draft of a short self-report questionnaire on patient life goals. They seek both patients with experience on HD, PD, or HHD, and clinical staff (nephrologists, nurses, dieticians, social workers). Those interested are asked to send a one-paragraph statement describing your interest and experience, to email@example.com by September 12, 2019.
The Coalition for Compassionate Care of California is conducting a survey to better understand the level of interest and engagement in a state-wide electronic Registry of Physician Orders for Life-Sustaining Treatment (POLST). POLST is a form that gives seriously-ill patients more control over their end-of-life care, including medical treatment, extraordinary measures (such as a ventilator or feeding tube) and CPR. Printed on bright pink paper, and signed by both a patient and physician, nurse practitioner or physician assistant, POLST can prevent unwanted or ineffective treatments, reduce patient and family suffering, and ensure that a patient’s wishes are honored. Since it’s designed to be readily available to all healthcare practitioners in any setting or circumstance, electronic availability would promote its purpose. For more information and a sample of the California form, see https://capolst.org/. Take the survey, if possible before August 9, 2019, at https://www.surveymonkey.com/r/3XC2PGX.