Patient and Community

Patient & Community

book with glasses on top image The ESRD Network of New England offers ESRD orientation and educational materials at no cost to patients, patients' family members, pre-ESRD patients and caregivers. Any educational item from the list below can be downloaded and printed on most PCs. Many items can also be requested singly or in larger quantity by e-mail, phone, or mail. If you are seeking educational information about an ESRD-related topic not listed, please contact the Network with your specific need, and a customized search can be conducted.

To order resource materials, please fill out the provider or patient order forms.

To better serve the renal community, we kindly ask that a feedback form be completed and faxed back to 203-389-9902 if materials have been requested and received from the Network of New England. Thank you.

Patient Resources

Your New Life		A guide for patients and patient’s families faced with Chronic Kidney Disease (CKD) or End Stage Renal Disease (ESRD).

Su Nueva Vida		Spanish translated version of Your New Life.

"Bee" Informed About Your Rights and Responsibilities		Patient Advisory Committee (PAC) developed brochure, with input from the new Conditions for Coverage, that lists rights and responsibilities of patients, while also describing the Network grievance policy.

Preparing for Emergencies		A patients guide of what to do prior to and during an emergency situation.

You Can Live		CMS booklet that booklet gives tips on treating kidney failure, making treatments better and living a healthier lifestyle

Employment: A Kidney Patients Guide to Working & Paying for Treatment		A brochure developed by Life Options Rehabilitation Program, supported by the End Stage Renal Disease Networks and administered by the MEI Institute. This document can be found on the Network website under Patient Services and Community.

NKF Coffee House Conversations™		Conference calls to empower and educate individuals affected by chronic kidney disease, transplantation and donation.

Five Wishes		A living will that talks about personal, spiritual and emotional needs as well as medical wishes. This document is available on the Network website.

Medicare Entitlement Update		This brochure attempts to clarify misconceptions regarding Medicare coverage and to answer several commonly asked questions. The Network receives many questions from dialysis personnel, patients and plan administrators regarding Medicare coverage. This publication may be useful to these individuals as well as others interested in entitlement issues.

Professional Resources

Improving Communication Tips		Dr. Mark Pettus, a New England Nephrologist and the son of two dialysis patients; developed the helpful communication tool entitled "Momentum Turning Questions". These questions are specifically designed for use in the dialysis setting to enhance conversations between patients, families and all members of the therapeutic team. Think of these questions as suggested ways to approach all types of communication - from the everyday to the most difficult.

Emergency Preparedness for Dialysis Facilities		A guide for chronic hemodialysis facilities providing a brief overview of the principles of emergency management: Mitigation, Preparedness, Response and Recovery.

Requirements for Approval of Transplant Centers		CMS hospital Requirements for the approval and re-approval of transplant centers to perform organ transplants.

Keep Kidney Patients Safe		A website administered by the Renal Physicians Association and the Forum of End Stage Renal Disease that serves as a resource for nephrology professionals who are committed to achieving and maintaining optimum levels of kidney patient safety. This website provides information and best practices to prevent the occurrence of the Five Adverse Patient Safety Events as identified by patient and professional surveys and also assists nephrology professionals in meeting the quality assessment and performance improvement (QAPI) requirements outlined in the Centers for Medicare and Medicaid Services (CMS) Conditions for Coverage for End Stage Renal Disease Facilities.

Be Aware Be Safe Poster		A poster created by the Patient Advisory Committee (PAC) that gives tips on awareness and safety on medications, access, diet and advocacy.

Do You Have a Concern?
(Network grievance notification card to hang in facility)

Connecticut	English	Spanish
Maine	English	Spanish
Massachusetts	English	Spanish
New Hampshire	English	Spanish
Rhode Island	English	Spanish
Vermont	English	Spanish

Conditions for Coverage

Patient Rights		A poster that states patients rights according to the Conditions for Coverage.

Patient Responsibilities		A poster stating patient responsibilities, which were taken from various sources and modified by the Network. One of the sources the responsibilities originated from is the Conditions for Coverage V464 (13).

Coordination of Benefits
Timeline (2009-2013)

Incenter Hemodialysis Patients		Table illustrating Medicare Part B coverage for incenter hemodialysis patients

Transplant and Self-Care Patients		Table illustrating Medicare Part B coverage for transplant & self-care (peritoneal and home hemodialysis) patients

Decreasing Dialysis Patient-Provider Conflict (DPC) Toolkit

The DPC toolkit, which is funded by the Centers for Medicare & Medicaid Services (CMS), is a coordinated, national effort by the ESRD community about conflict in dialysis facilities. The toolkit provides resources to understand, educate, and cope with conflict. Some of the goals of DPC are to create safe dialysis facilities, to increase awareness of conflict and improve skills to decrease conflict, to improve patient-staff relationships, and to create common language to describe conflict. The DPC toolkit, using the Conflict Model, follows these steps:

• Create a calm environment
• Openness in understanding others
• Need a Nonjudgmental approach
• Focus on the issue at hand
• Look for solutions
• Implement agreement
• Continue communication
• Take another look at the situation.

For more detailed information on DPC toolkit and the conflict model, please see the DPC brochure.

The DPC toolkit is important because it fosters an improved patient-staff working relationship; it prevents escalation of conflict to maintain a safe workplace and provides skills to intervene successfully in a conflict. The toolkit also improves employee morale, and increases employee and patient satisfaction with the dialysis experience.

Each unit, and each new unit, is sent a DPC toolkit. To order a toolkit for your facility, please contact the Patient Services Coordinator, Amber Maneca, at 203-387-9332, amaneca@nw1.esrd.net, or fax the order form to 203-389-9902. Thank you for doing your part to help in decreasing patient provider conflict.

Immunizations

Adult Immunizations

The summary of information presented in this brochure is intended for Medicare fee-for-service physicians, providers, suppliers, and other health care professionals who furnish or provide referrals for and/or file claims for the Medicare-covered preventive benefits discussed in this brochure.

Medicare

ESRD Medicare Booklet		If you have permanent kidney failure, this official government booklet explains the basics of Medicare, how Medicare helps pay for kidney dialysis and kidney transplants, and where to get help.

2010 Prescription Drug and Health Plan Options		Enhanced online tools make comparing Medicare's 2010 Prescription Drug and Health Plan options easier. The Centers for Medicare & Medicaid Services (CMS) announced that people with Medicare and family members can begin to review their 2010 coverage options through Medicare's improved online tools.

2010 Medicare Premiums, Deductibles, and Co-payments		Applies to Original Medicare Plan (Medicare Fee-for-Service). Co-payment: fixed dollar amount after annual deductible is met. Coinsurance: % of Medicare approved amount after annual deductible is met.

2010 QMB, SLMB, and QI Programs		The Qualified Medicare Beneficiary (QMB), Specified Low-Income Medicare Beneficiary (SLMB) and Qualifying Individual (QI) programs are federal Medicare Savings Programs (MSPs) which help low income elders and younger Medicare beneficiaries access Medicare benefits.

Changes in the Law Starting January 2010 Make it Easier to Save on Medicare Drug Plan Costs En Español		Beginning January 1, 2010, changes in the law, under the Medicare Improvements for Patients and Providers Act, will make it easier for some people to qualify for Extra Help with their Medicare prescription drug plan costs. Click here to see how in English and Spanish. Get some of your questions about the new law answered here.

Q&A MIPPA		Questions & Answers for the Medicare Improvements for Patients and Providers Act.

Medicare Part B

CMS Medicare Premiums and Deductibles for 2010		Informative facts about the Medicare Part B program.

H.R. 3631 - Medicare Premium Fairness Act		Facts sheet about protection for all seniors from Medicare Part B premium increases. The House passes H.R. 3631, . but the Senate has not.

Medicare Part D

Quick Facts Part D		Informative facts about the Medicare Part D program.

Quick Facts Part D How To Join		An explanation of the ways and times in which a person can enroll in Medicare Part D.

Quick Facts Part D with Medicare & Medicaid		An explanation of basic facts for patients who have both Medicare and Medicaid.

Medicare Part D Prescription Drug Plan complaints (i.e., grievances)		See the process CMS recommends if the beneficiary has not yet made a complaint, or if he or she has made a complaint and a reasonable amount of time has passed without resolution, or if the beneficiary has a dire or urgent need.

Treatment Options

When Stopping Dialysis Treatment Is Your Choice: A Guide for Patients and their Families		National Kidney Foundation brochure about choices patients have when they consider stopping dialysis.

Kidney Failure: Choosing a Treatment That’s Right for You		Web resource describing treatment options available to ESRD patients. The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health.

Kidney Options		Fresenius Medical Care North America supported website describing treatment options available to ESRD patients.

Transplantation

Transplantation - Treatment Methods for Kidney Failure		National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) manual explaining transplantation.

Partnering With Your Transplant Team En Español		U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA) Patient Guide to Transplantation.

Transplant Living		A web site created by UNOS focusing on before, during, and after the transplant process. Also has a section on pediatric transplantation.

American Society of Transplantation (AST)		This site has educational brochures available in both English and Spanish, as well as other information regarding transplants.

UNOS		United Network for Organ Sharing (UNOS) has transplant data as well as educational info for both patients and professionals. The Organ Center tracks and facilitates organ transplantation 24 hours a day, and the UNOS website provides a running tally of the number of waiting list candidates and transplants performed in the United States at any given time.

Transplant Centers in New England

Connecticut
HARTFORD HOSPITAL - TRANSPLANT Hartford Hospital Transplant Program P.O.Box 5037 80 Seymour Street Hartford, CT 06102-5037 Phone: 860-545-4219 Fax: 860-545-4328		YALE NEW HAVEN ORGAN TRANSPLANT CTR., DEPARTMENT OF SURGERY Transplant & Immunology Section PO BOX 208062 333 Cedar Street New Haven, CT 06520-8062 Phone: 203-785-2565 F ax: 203-785-7162
Maine
MAINE MEDICAL CENTER -TRANSPLANT Maine Transplant Program 19 West Street Portland, ME 04102 Phone: 207-662-7180 Fax: 207-662-7190
Massachusetts
BAYSTATE MEDICAL CENTER - TRANSPLANT Transplant Unit 300 Birnie Avenue, Suite 301 Springfield, MA 01107 Phone: 413-794-2321 Fax: 413-794-2603		BETH ISRAEL DEACONESS MEDICAL CENTER - TRANSPLANT Division of Transplantation 110 Francis Street, 7th Floor Boston, MA 02215 Phone: 617-632-9700 Fax: 617-632-9804

BRIGHAM AND WOMEN'S HOSPITAL - TRANSPLANT Renal Transplant Division PBB-215 75 Francis Street Boston, MA 02115 Phone: 617-732-6866 Fax: 617-732-7832		CHILDREN'S HOSPITAL BOSTON - TRANSPLANT Transplant Center Farley Four 300 Longwood Avenue Boston, MA 02115 Phone: 617-355-7636 Fax: 617-730-0342

LAHEY CLINIC - TRANSPLANT 41 Mall Road Burlington, MA 01805 Phone: 781-744-8974 Fax: 781-744-5009		NEW ENGLAND MEDICAL CENTER - T RANSPLANT Transplant Center Box #40 800 Washington Street Boston, MA 02111 Phone: 617-636-5592 Fax: 617-636-8228

MASSACHUSETTS GENERAL HOSPITAL - TRANSPLANT Transplant Center 55 Fruit Street Boston, MA 02114 Phone: 617-724-8610 Fax: 617-724-8652		U-MASS MEMORIAL HEALTH CARE SYSTEMS - TRANSPLANT Transplant Unit 55 Lake Avenue North Rm S3840 Worcester, MA 01655 Phone: 508-334-1269 Fax: 774-441-8098

UNIVERSITY HOSPITAL / B.U. MEDICAL CENTER - TRANSPLANT Doctors Office Building 720 Harrison Avenue, Suite 700 Boston, MA 02118 Phone: 617-638-8430 Fax: 617-638-8427

New Hampshire
DARTMOUTH HITCHCOCK MEDICAL CENTER - TRANSPLANT Transplant Unit One Medical Center Drive Lebanon, NH 03756 Phone: 603-653-3931 Fax: 603-650-0924
Rhode Island
RHODE ISLAND HOSPITAL - TRANSPLANT Transplant Services APC 921 593 Eddy Street Providence, RI 02903 Phone: 401-444-8562 Fax: 401-444-3283

Vermont
FLETCHER ALLEN HEALTHCARE MEDICAL CENTER HOSPITAL OF VERMONT TRANSPLANT Transplant Unit 1 South Prospect Street Burlington, VT 05401 Phone: 802-847-4774 Fax: 802-847-3619

Kidney Disease and Quality of Life (KDQOL™-36) Survey

Based on the requirements in the Conditions for Coverage, and the health-related quality of life survey that CMS has adopted as a new CPM, a facility must administer the KDQOL™-36 at least once per year. The KDQOL™-36 is a multi-purpose, short-form health survey with only 36 questions that includes physical & mental functioning and kidney-specific information.

The Medical Education Institute, Inc. (MEI)/Life Options (www.lifeoptions.org) designed an online version of the KDQOL™-36 for social workers to gain practice with the tool, see the questions, subscales, norms, and preview the reports and evidence-based suggestions for improving scores. Take the survey here - as a hypothetical patient. Note: Currently, the online survey does not save data. It was created as a learning tool for renal professionals. However, a subsequent project is planned for late winter that will let facilities score patient and facility data and track it on your unit’s computer.

Useful Links

http://www.cms.hhs.gov/ESRDNetworkOrganizations
http://www.aakp.org/
http://users.rcn.com/ktda1/
http://www.unos.org/
http://www.medicare.gov/Dialysis/Home.asp
http://www.esrdnetworks.org/
http://www.akfinc.org/
http://www.donatelife.net/
http://www.kidneyEOL.org/
http://www.kidney.org/
http://www.lifeoptions.org/