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The Patient Voice Drives Quality Improvement!
The NPFE-LAN is a partnership between patients, family members, caregivers, and dialysis providers. Where patients, family and caregivers are the subject matter experts (SMEs). SMEs share their stories, ideas, and perspectives on how to improve the way things work at the facility level to improve the patient experience. They drive change across all end stage renal disease (ESRD) Networks and dialysis facilities, helping to solve shared problems on a large scale.
To learn more about participating in the NPFE-LAN, contact your ESRD Network.
NPFE-LAN Affinity Groups
Each year, the NPFE-LAN holds four separate groups, called Affinity Groups, focused on specific areas of dialysis and transplant care. The groups meet monthly by webinar (phone and/or computer) to share experiences and discuss ways to improve the quality of care for kidney patients and meet the Centers for Medicare & Medicaid Services (CMS) quality improvement goals.
These resources support the people who care for individuals living with kidney disease.
Resources
- Caregiver Peer Connection Calls
Caregiver Peer Connection Calls are recordings of national calls that provided an opportunity for caregivers, care partners, and family members of someone with kidney disease to ask questions, speak to, and learn from others who care for a loved one with kidney disease.- Care Partner Peer Connection Call—August 22, 2024 Slide Deck (PDF)
- Care Partner Peer Connection Call—August 22, 2024 Video (YouTube)
- Caregiver Peer Connection Call—July 20, 2023 Slide Deck (PDF)
- Caregiver Peer Connection Call—July 20, 2023 Video (YouTube)
- Caregiver Peer Connection Call—February 23, 2023 Video (Webex)
- Caregiver Peer Connection Call—February 23, 2023 Slide Deck (PDF)
- Caregiver Peer Connection Call—July 12, 2022 Slide Deck (PDF)
- Caregiver Peer Connection Call—October 8, 2020 Slide Deck (PDF)
- Caregiver Peer Connection Call—October 8, 2020 Transcript (PDF)
- Caregiver Peer Connection Call—July 9, 2020 Video (YouTube)
- Caregiver Peer Connection Call—July 9, 2020 Slide Deck (PDF)
- Caregiver Peer Connection Call—July 9, 2020 Transcript (PDF)
- Caregiver Peer Connection Call—May 2020 Video (YouTube)
- Caregiver Peer Connection Call—May 2020 Slide Deck (PDF)
- Caregiver Peer Connection Call—May 2020 Transcript (PDF)
- Caregiver Peer Connection Call—April 2020 Video (YouTube)
- Caregiver Peer Connection Call—April 2020 Slide Deck (PDF)
- Caregiver Peer Connection Call—April 2020 Transcript (PDF)
- Caregiver Peer Connection Call—July 2019 Video (YouTube)
- Tips for Kidney Caregivers—A handout addressing the emotional health of caregivers by providing practical advice and suggestions for caregivers. (2019 Patient-Selected Topic Affinity Group)
- Caregiver Peer Connection Call—A recording of a national call that provided an opportunity for caregivers, care partners, and family members of someone with kidney disease to ask questions, speak to, and learn from others who care for a loved one with kidney disease. (2019 Patient-Selected Topic Affinity Group)
Resources
- Mental Health: Otilia's Story (YouTube)—Hear a kidney patient’s experience with mental health.
- Mental Health: Anthony's Story (YouTube)—Hear a kidney patient’s experience with mental health.
- Feelings Flashcard – A handout to help patients living with kidney failure identify their feelings and provide an activity that may help them cope.
- Self-help Flashcard – A handout describing self-help activities and the benefits of those activities.
- Caring for Your Mind and Body – A self-assessment tool to determine the areas of wellness a patient may need support.
- Caring for Your Mind and Body (Spanish)
- What is Health Literacy? (English)
- What is Health Literacy? (Spanish)
- Understanding Health Equity (English)
- Understanding Health Equity (Spanish)
- Words Matter (English)
- Words Matter (Spanish)
- Word Matter (Large Print, English)
- Taking Charge of Your Health: The Connected Patient's Guide to Health Management (English)
SMEs in the Home Dialysis Affinity Group develop interventions to support the CMS goal of increasing the number of ESRD patients dialyzing at home to 16 percent from the 2016 national average of 12 percent by 2023
Resources
- Home Dialysis: Jimmie's Story (YouTube)—Hear a kidney patient's experience with home dialysis.
- Home Dialysis: Delonta's Story (YouTube)—Hear a kidney patient's experience with home dialysis.
- Home Hemodialysis May Be the Best Option for You – A handout to help patients determine if home hemodialysis is the right option for them.
- Home Hemodialysis May Be the Best Option for You – A handout to help patients determine if home hemodialysis is the right option for them. (Spanish)
- Peritoneal Dialysis May Be the Best Option for You – A handout to help patients determine if peritoneal dialysis is the right option for them.
- Peritoneal Dialysis May Be the Best Option for You – A handout to help patients determine if peritoneal dialysis is the right option for them.(Spanish)
- Home Dialysis Poster – Professional – A poster to help healthcare professionals talk to dialysis patients about their home dialysis options.
- Home Dialysis Poster – Patients – A poster to help explain home dialysis options to patients.
- Home Dialysis Poster – Patients – A poster to help explain home dialysis options to patients. (Mandarin)
- Choosing Home Dialysis With Your Care Team – This resource offers topics to discuss with your care team when considering a home dialysis treatment option. (2020 Home Dialysis Affinity Group)
- Choosing Home Dialysis With Your Care Team (Spanish) – This Spanish-language resource offers topics to discuss with your care team when considering a home dialysis treatment option. (2020 Home Dialysis Affinity Group)
- Considering Home Dialysis – A resource to support making the choice for a home dialysis treatment option.
- Considering Home Dialysis (Spanish) – A resource to support making the choice for a home dialysis treatment option.
- My Home Dialysis Checklist – This checklist will help you organize your space and get ready to transition your care to your home. (2020 Home Dialysis Affinity Group)
- My Home Dialysis Checklist (Spanish) – This Spanish-language checklist will help you organize your space and get ready to transition your care to your home. (2020 Home Dialysis Affinity Group)
- Let’s Talk: Home Dialysis – An interactive tool to help patients and caregivers start a conversation about home dialysis treatment options.
(2019 Home Dialysis Affinity Group) - Home Dialysis Peer Connection Call – A recording of a national call that provided an opportunity for patients and family members to ask questions, speak to, and learn from patients who made the decision to dialyze at home.
(2019 Home Dialysis Affinity Group) - Uncovering Myths About Home Dialysis: Myths vs. Reality – A booklet highlighting common myths and facts about home hemodialysis and peritoneal dialysis.
(2018 Home Dialysis Affinity Group) - Home Dialysis Announcement— poster and flyer for celebrating and announcing when a patient chooses a home dialysis treatment.
(2018 Patient-Selected Topic Affinity Group)
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View 8.5"x14" - Home Dialysis Announcement (Spanish)— poster and flyer for celebrating and announcing when a patient chooses a home dialysis treatment.
(2018 Patient-Selected Topic Affinity Group)
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Resources
- 10 Steps to Avoid Unnecessary Hospitalizations — A handout with practical tips to help kidney patients stay out of the hospital.
- 10 Steps to Avoid Unnecessary Hospitalizations (Spanish)
- Hospital Discharge Checklist — A guide for patients and their caregivers when preparing to leave a hospital or other care setting.
- Lab Values Quick Guide (English) — A postcard quick guide to help kidney patients understand their labs and avoid hospitalization.
- Lab Values Quick Guide (Spanish)
- Lab Values Quick Guide (Large Print)
- Medical Appointment Tracker — This handout is perfect for anyone looking to track and organize their medical appointments.
- Where Should You Go for Medical Care — A worksheet for patients and their care team to determine where to go based on the care needed.
- Where Should You Go for Medical Care — A worksheet for patients and their care team to determine where to go based on the care needed. (Spanish)
SMES in the BSI Affinity Group create resources to support the CMS goal of reducing the national rate of BSIs in dialysis patients by 50 percent of the BSIs that occurred in 2016 by 2023.
Resources
- Patient Access Safety (English) — This resource was created to help kidney patients keep their access safe and improve infection control.
- Patient Access Safety (Spanish) — This resource was created to help kidney patients keep their access safe and improve infection control.
- Patient Access Safety (Large Print) — This resource was created to help kidney patients keep their access safe and improve infection control.
- Tips for Staying Healthy Outside of the Dialysis Clinic – The information in this handout was gathered by patients to help patients remain healthy outside the dialysis clinic. (2020 BSI Affinity Group)
- Tips for Staying Healthy Outside of the Dialysis Unit (Spanish) – The information in this Spanish-language handout was gathered by patients to help patients remain healthy outside the dialysis clinic. (2020 BSI Affinity Group)
- Guide to a Healthier You – This resource is a quick overview of what you need to know about your dialysis treatment. (2020 BSI Affinity Group)
- Guide to a Healthier You (Spanish) – This Spanish-language resource is a quick overview of what you need to know about your dialysis treatment. (2020 BSI Affinity Group)
- Test Your Knowledge Tutorial – An interactive learning module designed to increase knowledge of proper hand hygiene and demonstrate proper hand washing techniques in a dialysis facility setting. The module is mobile-friendly and can be shared through text messaging.
(2019 BSI Affinity Group) - World Hand Hygiene Day Celebration – While celebrating world hand hygiene day on May 5, 2018, the Affinity Group also identified several online resources to prevent sepsis in health care.
(2018 BSI Affinity Group) - Conversation Starter to Prevent Infections in Dialysis Patients – This resource from the Centers for Disease Control and Prevention (CDC) was identified as helpful in starting a conversation about preventing infections.
(2018 BSI Affinity Group) - CDC Audit Tool: Hemodialysis hand hygiene observations – This audit tool resource from the CDC is recommended for hemodialysis hand hygiene observations.
(2018 BSI Affinity Group) - We’re on the Right Track – Focusing on infection rates in dialysis facilities, this resource allows for tracking and posting of infection rates.
(2017 BSI Affinity Group) - We’re on the Right Track (Spanish) – Focusing on infection rates in dialysis facilities, this resource allows for tracking and posting of infection rates.
(2017 BSI Affinity Group) - CDC Clean Hands Count — The ESRD NCC NPFE-LAN members adapted the CDC's Clean Hand's Count campaign to make the materials applicable to ESRD and dialysis care.
(2016 BSI Affinity Group)
Each year, members of the Patient-Selected Topic Affinity Group discuss relevant topics that are important to kidney patients and identify the theme for the Affinity Group.
- 2020 Introduction to Dialysis
- 2019 Emotional well-being for patients and caregivers
- 2018 Grief, loss, and abandonment
- 2017 Setting SMART goals to staying active in their care and lives
- 2016 Thriving with kidney disease
Resources
- How Dialysis Feels – A resource to explain dialysis and how it works.
- How Dialysis Feels (Spanish) – A resource to explain dialysis and how it works.
- Questions to Help with Your Treatment Choices – A handout designed to help you develop questions to ask your healtcare team about your treatment options. (2020 Patient-Selected Topic Affinity Group)
- Questions to Help With Your Treatment Choices (Spanish) – A Spanish-language handout designed to help you develop questions to ask your healtcare team about your treatment options. (2020 Patient-Selected Topic Affinity Group)
- Questions to Get You Started – A resource to help you develop questions to ask your healthcare team after you begin treatment. (2020 Patient-Selected Topic Affinity Group)
- Questions to Get You Started (Spanish) – A Spanish-language resource to help you develop questions to ask your healtcare team after you begin treatment. (2020 Patient-Selected Topic Affinity Group)
- Preventing Peritonitis Peritonitis: Symptoms, Treatment, Prevention – This resource is designed to help you recognize the signs and symptoms of peritonitis, as well as provide information on how its treated.
- Goal Setting: Getting Back to Me – This workbook is designed to help patients restore their sense of dignity and increase self-esteem through goal setting. (2019 Patient-Selected Topic Affinity Group)
- Tips for Kidney Caregivers – A handout addressing the emotional health of caregivers by providing practical advice and suggestions for caregivers. (2019 Patient-Selected Topic Affinity Group)
- Tips for Kidney Caregivers (Spanish) – A handout addressing the emotional health of caregivers by providing practical advice and suggestions for caregivers. (2019 Patient-Selected Topic Affinity Group)
- Caregiver Peer Connection Call – A recording of a national call that provided an opportunity for caregivers, care partners, and family members of someone with kidney disease to ask questions, speak to, and learn from others who care for a loved one with kidney disease.
(2019 Patient-Selected Topic Affinity Group) - Health Status Release Form – An authorization form providing consent to share a change in health status with identified individuals.
(2018 Patient-Selected Topic Affinity Group) - Health Status Release Form (Spanish) – An authorization form providing consent to share a change in health status with identified individuals. (2018 Patient-Selected Topic Affinity Group)
- Memorial Card – A printable memorial card.
(2018 Patient-Selected Topic Affinity Group) - In Memory Poster – poster and flyer to recognize the life of a deceased patient. (2018 Patient-Selected Topic Affinity Group)
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View 8.5"x14" - Home Dialysis Announcement - poster and flyer for celebrating and announcing when a patient chooses a home dialysis treatment.
(2018 Patient-Selected Topic Affinity Group)
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View 8.5"x14" - Transplant Announcement - poster and flyer for celebrating and announcing when a patient receives a kidney transplant
(2018 Patient-Selected Topic Affinity Group)
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SMEs in the Transplant Affinity Group create resources that support the CMS goal of increasing the percentage of ESRD patients on the transplant waitlist to 30 percent from the 2016 national average of 18.5 percent by 2023..
Resources
- New Medicare Coverage for Immunosuppressant Drugs — Information about the new immunosuppressant drug coverage
- Waitlist — Ten Steps to Remain Active on the Transplant Waitlist
- Waitlist (Spanish) — Ten Steps to Remain Active on the Transplant Waitlist
- How Might I Shorten My Time on the Kidney Transplant Waitlist? — Tips to help dialysis patients shorten their time on the kidney transplant waitlist.
- How Might I Shorten My Time on the Kidney Transplant Waitlist? — Tips to help dialysis patients shorten their time on the kidney transplant waitlist. (Spanish)
- How Might I Shorten My Time on the Kidney Transplant Waitlist? — Tips to help dialysis patients shorten their time on the kidney transplant waitlist. (Mandarin)
- Transplant Times with a Transplant Recipient Podcast – Precious McCowan talks to Robert Crabtree and Toni Binns about their kidney transplant journeys. They share their thoughts on the kidney transplant waitlist and the challenges they faced before and after the surgery.
- Get the Facts: Kidney Transplantation — Learn the facts about getting a kidney transplant and how it might affect you, before you make decisions about your treatment. (2020 Transplant Affinity Group)
- Get the Facts: Kidney Transplantation (Spanish) — Learn the facts about getting a kidney transplant and how it might affect you, before you make decisions about your treatment. (2020 Transplant Affinity Group)
- Transplant 101 Series — These seven resources share information to help you better understand the transplant journey.
- Partnering Along the Road to Transplant — A handout detailing five key steps to effective communication between patients and healthcare professionals.
(2019 Kidney Transplant Affinity Group) - Partnering Along the Road to Transplant (Spanish) — A handout detailing five key steps to effective communication between patients and healthcare professionals.
(2019 Kidney Transplant Affinity Group) - Post Transplant: What to Consider (English) — A resource to help kidney patients be prepared after a transplant.
- Post Transplant: What to Consider (Spanish) — A resource to help kidney patients be prepared after a transplant.
- Post Transplant: What to Consider (Large Print) — A resource to help kidney patients be prepared after a transplant.
- Kidney Transplant Peer Connection Call — A recording of a national call that provided an opportunity for patients and their family members to ask questions, speak to, and learn from transplant recipients who made the decision to receive a kidney transplant.
(2019 Kidney Transplant Affinity Group) - Why Transplant is a Good Idea for Me — A flyer addressing patients’ common concerns and fears about transplantation.
(2018 Kidney Transplantation Affinity Group) - Why Transplant is a Good Idea for Me (Spanish) — A flyer addressing patients’ common concerns and fears about transplantation.
(2018 Kidney Transplantation Affinity Group) - The Road to Transplant — A brochure offering tips for patients considering receiving a kidney transplant.
(2018 Kidney Transplantation Affinity Group) - The Road to Transplant (Spanish) — A brochure offering tips for patients considering receiving a kidney transplant.
(2018 Kidney Transplantation Affinity Group) - Transplant Bookmark (English) — A bookmark to help kidney patients remain hopeful during their transplant journey.
- Transplant Bookmark (Spanish) — A bookmark to help kidney patients remain hopeful during their transplant journey.
- Transplant Bookmark (Large Print) — A bookmark to help kidney patients remain hopeful during their transplant journey.
- Transplant Celebration Announcement — A poster and flyer for celebrating and announcing when a patient receives a kidney transplant
(2018 Patient-Selected Topic Affinity Group)
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View 8.5"x14" - Transplant Celebration Announcement (Spanish) — A poster and flyer for celebrating and announcing when a patient receives a kidney transplant
(2018 Patient-Selected Topic Affinity Group)
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View 8.5"x14"
- My Why—Subject Matter Experts Share Why Vaccinations Are Important to Them
- COVID-19 Vaccination Patient Stories — View the Playlist
- Get the Flu Shot: Not Flu (Video)
- Get the Facts About the Flu and Pneumonia Vaccine — Learn the facts about the Flu and Pneumonia vaccines.
- Get the Facts About the Flu and Pneumonia Vaccine — Learn the facts about the Flu and Pneumonia vaccines. (Spanish)
- Immunization Card – A resource to track your immunizations.
- Immunization Card (Spanish) — A resource to track your immunizations.
- Vaccine Benefits (English) — This postcard was created to remind kidney patinets of the benefits of receiving vaccinations and vaccines recommended for the ESRD community.
- Vaccine Benefits (Spanish) — This postcard was created to remind kidney patinets of the benefits of receiving vaccinations and vaccines recommended for the ESRD community.
- Vaccine Benefits (Large Print) — This postcard was created to remind kidney patinets of the benefits of receiving vaccinations and vaccines recommended for the ESRD community.
- Vaccine Fatigue (English) — This postcard highlights fatigue surrounding vaccine information and reminds kidney patients of the benefits of vaccines.
- Vaccine Fatigue (Spanish) — This postcard highlights fatigue surrounding vaccine information and reminds kidney patients of the benefits of vaccines.
- Vaccine Fatigue (Large Print) — This postcard highlights fatigue surrounding vaccine information and reminds kidney patients of the benefits of vaccines.
Additional resources were developed by Affinity Groups providing education about the grievance processes and In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH-CAHPS) surveys.
Resources
- Missing Treatment Domino
- Missing Treatment Domino (Spanish)
- Your Fluid Intake Matters!
- Your Fluid Intake Matters (Spanish)
- My Plan, My Care
- My Plan, My Care (Spanish)
- QAPI Meeting Resource
- QAPI Meeting Resource (Spanish)
- Telemedicine Resource Handout – This document provides an explanation of telemedicine and gives sample questions patients can ask their healthcare team during a telemedicine visit.
- My Experience of Care Card – This card helps kidney patients track the care they receive at a dialysis center. The information can be used to help patients complete the ICH-CAHPS survey.
(2017 ICH-CAHPS Affinity Group) - Grievance Toolkit, One-Page Summary – A one-page summary highlighting the 41-page Grievance Toolkit created by the Forum of ESRD Networks Kidney Patient Advisory Council (KPAC).
(2017 Grievance Satisfaction Affinity Group) - What is the ICH CAHPS Survey? – A poster explaining the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey.
(2016 ICH CAHPS Affinity Group) - Nothing About Me Without Me – A handout explaining the importance of patients participating in the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey.
(2016 ICH CAHPS Affinity Group) - Nothing About Me Without Me (Spanish) – A handout explaining the importance of patients participating in the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey.
(2016 ICH CAHPS Affinity Group) - Improving Patient-Centered Care – A brochure explaining how the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey for can help improve patient care.
(2016 ICH CAHPS Affinity Group) - Patient Grievances, A Guide for ESRD Patients – A brochure and form developed to explain the process of reporting a grievance.
(2016 Grievance Satisfaction Affinity Group)
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