welcome. 1.4 million america’s with ibd crohn’s & colitis foundation of america is here to:...

16
Welcome

Upload: terence-cannon

Post on 23-Dec-2015

221 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

Welcome

Page 2: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

1.4 Million America’s with IBD

Crohn’s & Colitis Foundation of America is here to:

Cure Crohn’s and ulcerative colitis, and to improve the quality of life of children and adults affected by these disease

Page 3: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

CCFA Nursing Initiatives Committee (NIC)

• Formed in 2010– Chair - Michele Rubin APN CNS

CGRN – IBD Adult (University of Chicago Medicine)

– Co-Chair – Maureen Kelly APN NP – IBD Pediatric (University of North Carolina – Chapel Hill)

• NIC comprised of 20 RNs, NPs, CNSs from across the U.S.

• NIC is part of the CCFA National Scientific Advisory Committee

• Leading CCFA’s efforts to provide educational opportunities and resources to the RN community

Page 4: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

CCFA.org - For IBD Nurses: Monthly Tips

• Monthly nursing tips• Created and

referenced by the NIC• Topics have included:

- Adherence

- Reminders for vaccines and flu shots

- General health maintenance

www.ccfa.org/science-and-professionals/programs-materials/ibd-nurses/

Page 5: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

December – IBD Awareness -----December Tips• For our providers that take care of the senior population with IBD:  Remember to

remind your patients that it is open enrollment for Medicare until December 7. 2012.  There have been changes.  Refer to http://www.medicare.gov

• Travel tips:• This is a popular time of the year to travel, whether it is by car, train, or plane.  For air and train travel, recommend

aisle seating for ease of getting up to use the rest room.  For air travel in particular, remind your patients to stay hydrated since flying is very dehydrating.  For car travel, it may be helpful to map out stops or even travel with a portable toilet.  There is a fantastic app for the iPhone called “Sit or Squat” sponsored by Charmin that actually will locate the closest bathroom, provide reviews (or allow you to review them) and sometimes has pictures (or allow you to upload).  

• For any sort of travel, • Always pack toilet paper, • wet wipes, • A change of clothes. • Always have a list of emergency numbers:  gastro MD, surgeon (if applicable), primary care MD.  • Always pack the original medication containers with extra medication, not just the little travel packs.  • ALWAYS pack medications in carryon. Ostomy supplies should also go in carryon luggage. 

•  • Tell patients to advise security if they have needles and injectable medications.  For such medications, they should

also have a portable sharps container and ice packs if medications should be kept cold. 

Page 6: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

IBD Awareness -----December Tips

International Travel

For international travel provide antibiotics for possible travelers diarrhea.  Make sure your patients have inquired about appropriate vaccines.  Advise patients to always bring toilet paper as some countries require to pay for paper and in a emergency situation it is better to have ones’ own.  Bring hand sanitizer, running water may not be available for washing hands.  ALWAYS inquire about the safety of drinking water. TIP: Provide patients with CCFA TSA tips: TSA 101

Infused MedicationsNow is the time of the year that some of the Remicade infusion patients travel away for the winter or patients are home from college for extended periods of time.  2infuse.com is a website provided by Janssen Biotech.  This web site allows you to plug in the zip code of where your patient will be and gives a list of sites in that area that do infusions.  A word of warning; pay attention to the area where it states if they have Remicade infusion experience or not, some do not.  This is not an all-inclusive list of Remicade infusion centers, just ones that have registered with Janssen.  Check with the other biologic providers to see if they offer similar information or assistance through their website or help-lines.  Resources for Health MaintenanceGeneral Health Maintenance Fact SheetVisit your local chapter for information on our "Nutrition & IBD: Choices for Adults and Kids" - education program

CCFA Nursing Education ProgramsTransitions in IBD: Graduating to Young Adult Care - 3/15/12

Page 7: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

CCFA’s Information Resource Center (IRC)

• The IRC offers treatment, diet, flare management & other helpful information about Crohn’s disease and ulcerative colitis

• Free materials, such as brochures & fact sheets

• Find doctors, support groups & education programs

• Information on financial resources

• Get help in 170 different languages

• Phone: (888) MY.GUT.PAIN

(888-694-8872)

Mon – Fri 9:00 am -5:00 pm (et)

• Email & Live Chat [email protected]

• Online community: www.ccfacommunity.org

• IBD Management Choices http://www.ibdetermined.org

• Website: www.ccfa.org

Page 8: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

Appeal Letters

Download Customizable Appeal Letters for Your Patients. Sample letters include:

AccommodationsSchool AccommodationsEmployment AccommodationPrivate Dorm and Bathroom

DisabilitySocial Security Disability

ResourcesLife InsuranceFinancial ResourcesMental Health BenefitsOstomy Patient Assistance

Medication/TreatmentCertolizumab Pego BoostPediatric Adalimumab TherapyOff LabelingAdalimumab DosingAdalimumab for UCInfliximab Dose Escalation

Tests/ProceduresCalprotectinCapsule EndoscopyMetabolite Level TestingInfliximab & HACATPMT (Thiopurine Methyltransferase)

Page 9: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

GI Buddy Disease Management Tool

• Disease management tool for tracking symptoms, treatment, diet, and lifestyle factors

• Report capability to view patient’s history and patterns

• Accessible online at www.ccfa.org/gibuddy and for download as a mobile app for on-the-go management!

Page 10: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

CCFA on Social Media

• Facebook: http://www.facebook.com/ccfafb

• Twitter: http://twitter.com/ccfa

• YouTube: http://www.youtube.com/ccfa

Page 11: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

CCFA Community Website

• Online Community for patients and caregivers: – Discussion boards– Online support groups– “Ask an Expert” feature – Customized IBD

knowledge navigator

www.ccfacommunity.org/

Page 12: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

General and Adult Information

Brochures include: Living with Crohn’s Disease Living with Ulcerative Colitis Diagnosing & Managing IBD Understanding IBD Medication

Fact Sheets include: Diet & Nutrition Pregnancy & IBD Young Adults & IBD Biologic Therapy Influenza & IBD Financial Resources

www.ccfa.org/science-and-professionals/programs-materials/patient-brochures/

Page 13: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

Newly Diagnosed Kit

The Facts on Crohn’s & Colitis• Comprehensive, multimedia kit for

newly diagnosed patients and loved ones

• Provides the basics on IBD and where to go for additional resources

• Includes a 36-pg booklet and DVD featuring fellow patients and IBD experts

• Web version available at http://www.ccfa.org/what-are-crohns-and-colitis/newly-diagnosed/

Page 14: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

Pediatric Enduring Material

Brochures include: A Guide for Parents A Guide for Kids and Teenagers A Guide for Teachers and other School

Personnel Pete Learns All About Crohn’s & Colitis IBD & Me Activity Book

Fact Sheets include: Managing IBD as a Young Adult Pregnancy & IBD Young Adults & IBD Pill Swallowing Techniques for Kids and

Teens

www.ccfa.org/science-and-professionals/programs-materials/patient-brochures/

Page 15: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

CCFA Partners

• Partners is CCFA’s registry of patient-reported outcomes. The study is a comprehensive internet-based registry, designed to study patients with Crohn’s disease or ulcerative colitis under a single research initiative and is available for pediatric and adult patients.

• Encourage your patients to participate and be part of the cures by visiting: www.ccfapartners.org

Page 16: Welcome. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality

Membership: Nurses join for $99

Nursing & Healthcare Professionals Benefits include:• Free membership for patients• Invitations to latest programs and

information• Subscription to the IBD Journal• Discount to “Advances in IBD”

conference• Exclusive access to on-line “Decision

Making” educational tool for patients considering biologic therapy

www.ccfa.org/get-involved/become-member/professional-membership/