Partnering For Care: Help Your CF Care Center Help You Thrive - - PowerPoint PPT Presentation

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Partnering For Care: Help Your CF Care Center Help You Thrive - - PowerPoint PPT Presentation

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Partnering For Care: Help Your CF Care Center Help You Thrive August 19, 2010 This Web cast is supported by an unrestricted educational grant from Genentech, Inc. Archived CF Education Web Casts www.cff.org/LivingWithCF/Webcasts ff /Li i

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SLIDE 1

Partnering For Care: Help Your CF Care Center Help You Thrive

August 19, 2010

This Web cast is supported by an unrestricted educational grant from Genentech, Inc.

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SLIDE 2

Archived CF Education Web Casts

ff /Li i WithCF/W b t www.cff.org/LivingWithCF/Webcasts

  • CF Research
  • Lung health and lung disease
  • Nutrition for kids and adults
  • Nutrition for kids and adults
  • Germs, infection control and people with CF

CF h lth i d

  • CF healthcare coverage – insurance and

government programs F tilit i f ti

  • Fertility information
  • Building life skills to manage CF and more
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SLIDE 3

Next Web Cast: Research and the F t f CF C Future of CF Care

  • Tuesday, November 30th at 9 p.m. Eastern

y, p

  • From the University of Alabama at

Birmingham Birmingham

  • Featuring Eric Sorscher, M.D. and

Steven Rowe M D M S P H Steven Rowe, M.D., M.S.P.H.

  • Submit your questions when you register
  • Registration to open the end of October
  • Registration to open the end of October
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SLIDE 4

Partnering for Care g

  • Partnering For Your Child with CF

g

  • Partnering in the Transition to

Adult CF Care Adult CF Care

  • Partnering as an Adult with CF
  • Partnering when Thinking about Lung
  • Partnering when Thinking about Lung

Transplantation

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SLIDE 5

Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital

Partnering for Care

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 6

Partnering For Your Partnering For Your Child with CF

August 19, 2010

Peter Mogayzel MD PhD Peter Mogayzel, MD, PhD Johns Hopkins Hospital

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SLIDE 7

Members of CF Pediatric Team

  • Child with CF and family
  • Doctor
  • Nurse
  • Nurse
  • Dietitian

R i t &/ Ph i l Th i t

  • Respiratory &/or Physical Therapist
  • Social Worker &/or Psychologist
  • Clinical Research Coordinator
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SLIDE 8

How do you keep updated on t ti ? current practices?

  • Read medical & scientific journals

j

  • CF Practice Guidelines
  • Attend professional conferences e g

North

  • Attend professional conferences, e.g., North

American &/or European CF Conferences

  • Network/consult with others who care for
  • Network/consult with others who care for

people with CF

Collaboratives – Collaboratives – List-servs

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SLIDE 9

Partnering For Your Partnering For Your Child with CF

August 19, 2010

Peter Mogayzel MD PhD Peter Mogayzel, MD, PhD Johns Hopkins Hospital

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SLIDE 10

Learn More…

  • Talk with your CF Team members
  • CF Foundation’s Web site

CF Foundation s Web site

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SLIDE 11
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SLIDE 12
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SLIDE 13

Learn More…

  • Talk with your CF Team members
  • CF Foundation’s Web site

– Living with Cystic Fibrosis/Staying Healthy – Treatments/Therapies – Treatments/CF Care Guidelines

  • Medical Journals online – www.pubmed.gov

p g

  • NIH - www.medlineplus.gov
  • Starlight Children’s Foundation – cf starlight org
  • Starlight Children s Foundation – cf.starlight.org
  • www.hopkinscf.org
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SLIDE 14

Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital

Partnering for Care

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 15

Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital

Partnering in the T iti t Transition to Adult CF Care

August 19, 2010

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 16

Transition should start at the time of diagnosis! diagnosis!

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SLIDE 17

15,000

Trends in Trends in Number of Number of Patients, 1986-2009 Patients, 1986-2009

12,000 9,000

Patients

6,000

umber of P

3,000

Nu Pediatrics (< 18 years old) Adults (≥ 18 years old)

√

'86 '88 '90 '92 '94 '96 '98 '00 '02 '04 '06 '08

Year

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SLIDE 18

Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital

Partnering in the T iti t Transition to Adult CF Care

August 19, 2010

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 19

The Goal:

Perfection Developing a Sense of Self-responsibility Self-responsibility

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SLIDE 20

Ideal Transition to Adult CF Care

nsibility Respon Age 21

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Goals for 12 ‐ 14 Year Olds

  • Knows what causes CF and how the body is

affected

  • Knows the names medications and when to

take them and actually does take them take them and actually does take them

  • Understands the purpose of each medication
  • Performs airway clearance without help
  • Performs airway clearance without help

(most of the time)

  • Understands choices about smoking and
  • Understands choices about smoking and

drinking and effect on health in CF

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SLIDE 22

Goals for 16 – 18 Year Olds

  • Ability to recognize symptoms and describe them
  • Awareness of the dates of clinic appointments

and other tests and can schedule them

  • Awareness of medication supply and participates

in refilling prescriptions g p p

  • Speaks directly to CF healthcare providers to

discuss changes in health d scuss c a ges ea

  • Learns to maintain own equipment
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SLIDE 23

Goals for 21 Year Olds

  • Contact CF healthcare providers directly to

p y discuss changes in health

  • Schedule all appointments and tests

Schedule all appointments and tests

  • Refill prescriptions independently
  • Awareness of details about insurance and
  • Awareness of details about insurance and

strategies for future coverage

Boyle MP. “Transition from Pediatric to Adult Care: It’s a Transition for Parents As Well!”, 2007.

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“The worst thing you can do for someone

  • lo e is to do

for someone you love is to do that which they could and y should do for themselves.”

— John Wooden

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SLIDE 25

Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital

Partnering in the T iti t Transition to Adult CF Care

August 19, 2010

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 26

Learn More…

  • Talk with your CF Team members

y

  • “Building Life Skills to Manage CF” Web cast
  • n CF Foundation's Web site
  • n CF Foundation s Web site
  • NIH – www.medlineplus.gov
  • www hopkinscf org
  • www.hopkinscf.org
  • Kidshealth.org - search “transition”
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SLIDE 27

Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital

Partnering for Care

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 28

Partnering as an Partnering as an Adult with CF

August 19, 2010

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 29

How do you keep updated on t ti ? current practices?

  • Read medical & scientific journals

j

  • CF Practice Guidelines
  • Attend professional conferences e g

North

  • Attend professional conferences, e.g., North

American &/or European CF Conferences

  • Network/consult with others who care for
  • Network/consult with others who care for

people with CF

Collaboratives – Collaboratives – List-servs

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SLIDE 30

Members of CF Adult Team

  • Adult with CF and family
  • Doctor
  • Nurse
  • Nurse
  • Dietitian

R i t &/ Ph i l Th i t

  • Respiratory &/or Physical Therapist
  • Social Worker &/or Psychologist
  • Clinical Research Coordinator
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SLIDE 31

Partnering as an Partnering as an Adult with CF

August 19, 2010

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 32

Learn More…

  • Talk with your CF Team members
  • CF Foundation’s Web site

CF Foundation s Web site

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SLIDE 33
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SLIDE 34
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SLIDE 35

Learn More…

  • Talk with your CF Team members
  • CF Foundation’s Web site

– Living with Cystic Fibrosis/Staying Healthy – Treatments/Therapies p – Treatments/CF Care Guidelines

  • Medical Journals online – www pubmed gov

Medical Journals online www.pubmed.gov

  • NIH - www.medlineplus.gov
  • www cfroundtable com
  • www.cfroundtable.com
  • www.hopkinscf.org
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SLIDE 36

Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital

Partnering for Care

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 37

Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital

Partnering when Thi ki b t L Thinking about Lung Transplantation

August 19, 2010

Mi h l B l MD Michael Boyle, MD Johns Hopkins Hospital

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SLIDE 38

Learn More…

  • Talk with your CF Team members

y

  • CF Foundation’s Web site

– Treatments/Lung Transplantation – Treatments/Lung Transplantation – Treatments/CF Care Guidelines

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SLIDE 39
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SLIDE 40

Learn More…

  • Talk with your CF Team members

y

  • CF Foundation’s Web site
  • Medical Journals online – www pubmed gov
  • Medical Journals online – www.pubmed.gov
  • Transplant Living - www.transplantliving.org

U it d N t k f O Sh i

  • United Network for Organ Sharing -

www.unos.org

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SLIDE 41

Learn More…

  • NIH - www.medlineplus.gov

p g

  • NTAF - www.ntafund.org
  • Children’s Organ Transplant Association -
  • Children s Organ Transplant Association -

www.cota.org

  • Organ Donor gov

www organdonor gov

  • Organ Donor.gov - www.organdonor.gov
  • Share Your Life - www.shareyourlife.org
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SLIDE 42

Partnering for Care Series

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SLIDE 43

Partnering For Care: CF Foundation- Accredited Care Centers

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SLIDE 44

Partnering For Care: Help Your Nurse Help Your Nurse Help You Thrive

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SLIDE 45

Partnering For Care: Help Your Dietitian Help Your Dietitian Help You Thrive

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SLIDE 46

Partnering For Care: Partnering For Care: Help Your Respiratory and Respiratory and Physical Therapist Help You Thrive Help You Thrive

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SLIDE 47

Partnering For Care: Partnering For Care: Help Your Social Worker & Social Worker & Psychologist Help You Thrive Help You Thrive

slide-48
SLIDE 48

Archived CF Education Web Casts

ff /Li i WithCF/W b t www.cff.org/LivingWithCF/Webcasts

  • CF Research
  • Lung health and lung disease
  • Nutrition for kids and adults
  • Nutrition for kids and adults
  • Germs, infection control and people with CF

CF h lth i d

  • CF healthcare coverage – insurance and

government programs F tilit i f ti

  • Fertility information
  • Building life skills to manage CF and more
slide-49
SLIDE 49

Next Web Cast: Research and the F t f CF C Future of CF Care

  • Tuesday, November 30th at 9 p.m. Eastern

y, p

  • From the University of Alabama at

Birmingham Birmingham

  • Featuring Eric Sorscher, M.D. and

Steven Rowe M D M S P H Steven Rowe, M.D., M.S.P.H.

  • Submit your questions when you register
  • Registration to open the end of October
  • Registration to open the end of October
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SLIDE 50
  • …for watching & submitting questions

…for watching & submitting questions

  • Peter Mogayzel and Michael Boyle
  • Rick Vasta & the technical crew
  • Rick Vasta & the technical crew
  • Emily Ann Powell, Melissa Chin

Th CF F d ti

  • The CF Foundation
  • Genentech