MEI Primer on ESRD, SSI, SSDI, and Medicare

The Medical Education Institute has written a blog post on Social Security Policies Related to Medicare: A Primer.  It’s really complicated, so it may be more appropriate for a Social Worker than a patient, but if the Primer is this complex, the Reality must be especially daunting – which makes a Primer all the more valuable.  Find the Primer at https://homedialysis.org/news-and-research/blog/307-social-security-policies-related-to-medicare-a-primer.

HDC re LOL-HD

MEI’s Home Dialysis Central blog has an interesting post on Laugh Out Load Hemodialysis, which Satellite Dialysis has been experimenting with.  Among other things, the post describes the physiological benefits of laughter, including its positive impact on mood, pain, lungs, cardiovascular function, and immune response.  Find the post at https://homedialysis.org/news-and-research/blog/305-laugh-out-loud-hemodialysis-lol-hd-improving-the-dialysis-experience-at-satellite-healthcare/.  While the subject of the post is in-center dialysis, anyone with an internet connection and computer or smartphone who dialyzes at home can call up a million comedies to watch.  See also https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/DPC/DPCLaugh2019.pdf for information on a May 26, 2019 webinar on Pain Relief through Laughter.

SONG Glomerular Disease Survey

The Standardized Outcomes in Nephrology – Glomerular Disease (SONG-GD) study is an international initiative to identify outcomes in glomerular disease that are important to patients, caregivers, clinicians and other health professionals.  This will inform the development of core outcomes that are important and relevant to measure and report in glomerular disease.

SONG-GD includes a voluntary 15-minute survey to help determine a core outcome set for glomerulonephritis trials, to be taken by anyone who meets the following criteria:

  • You are 18 yrs of age or older
  • You are one of the following:
    • A patient with any major form of glomerular disease*, at any stage of development**
    • A family or household member of a patient with any major form of glomerular disease*, at any stage of development**
    • A caregiver for a patient with any major form of glomerular disease*, at any stage of development**
    • A healthcare practitioner or trainee, social worker, dietitian, pharmacist, psychologist, physiotherapist, researcher, policy-maker, or other stakeholder who deals with glomerular disease
    • You work in an industry that deals with glomerular disease
  • *Major forms of glomerular disease include:
      • ANCA vasculitis
      • Anti-GBM disease
      • Anti-glomerular basement membrane disease
      • Anti-neutrophil cytoplasmic antibody associated vasculitis
      • C3GN
      • Complement-mediated glomerulopathy
      • Focal segmental glomerulosclerosis
      • FSGS
      • Goodpasture’s disease
      • Goodpasture syndrome
      • GPS
      • Henoch-Schoenlein purpura
      • IgA nephropathy
      • IgA vasculitis
      • Lupus nephritis
      • Membranoproliferative glomerulonephritis
      • Membranous nephropathy
      • Minimal change disease
      • MPGN
  • **Stages of kidney disease development include:
      • Normal kidney function
      • Chronic kidney disease
      • ESRD, dialysis, or transplant

Answers will be completely anonymous and analyzed only in combination with other responses.  Find the survey at https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_djzDXYqzIQ0dMGN.  You will be asked for your name and email address so SONG-GD can send you a short follow-up survey.

Online English/Spanish Treatment Options Tool

My Life, My Dialysis Choice is a free English/Spanish, values-based dialysis treatment matcher developed by the non-profit MEI and endorsed by AAKP and Home Dialyzors United.  You enter your lifestyle preferences, and My Life, My Dialysis Choice suggests treatment options most appropriate for you.  The tool is written at a 5th grade reading level and includes ALL types of dialysis.  Find My Life, My Dialysis Choice at https://mydialysischoice.org/.  It may load in either English or Spanish, but you can switch by clicking on the “English” or “Español” button in the upper left corner of the screen.

NW16 3/3 NKF/PKG Patient Symposium on Lifestyle

NKF and PKG will present a March 3, 2019 Patient & Community Education Symposium in Portland OR on Lifestyle Makes a Difference: Controlling What You Can.  Registration is recommended because space is limited.  For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/NKF.EdSym.PKG0319.pdf.

NW16 3/3 NKF/PKG Patient Symposium on Lifestyle

NKF and PKG will present a March 3, 2019 Patient & Community Education Symposium in Portland OR on Lifestyle Makes a Difference: Controlling What You Can.  Early registration is recommended because space is limited.  For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/NKF.EdSym.PKG0319.pdf.