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 WithCF/W b t • 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 healthcare coverage – insurance and CF h lth i d government programs • Fertility information F tilit i f ti • Building life skills to manage CF and more
Next Web Cast: Research and the F t Future of CF Care f CF C • 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 Steven Rowe, M.D., M.S.P.H. M S P H • Submit your questions when you register • Registration to open the end of October • Registration to open the end of October
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
Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital Partnering for Care Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
Partnering For Your Partnering For Your Child with CF August 19, 2010 Peter Mogayzel MD PhD Peter Mogayzel, MD, PhD Johns Hopkins Hospital
Members of CF Pediatric Team • Child with CF and family • Doctor • Nurse • Nurse • Dietitian • Respiratory &/or Physical Therapist R i t &/ Ph i l Th i t • Social Worker &/or Psychologist • Clinical Research Coordinator
How do you keep updated on current practices? t ti ? • 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
Partnering For Your Partnering For Your Child with CF August 19, 2010 Peter Mogayzel MD PhD Peter Mogayzel, MD, PhD Johns Hopkins Hospital
Learn More… • Talk with your CF Team members • CF Foundation’s Web site CF Foundation s Web site
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
Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital Partnering for Care Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital Partnering in the T Transition to iti t Adult CF Care August 19, 2010 Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
Transition should start at the time of diagnosis! diagnosis!
Trends in Trends in Number of Number of Patients, 1986-2009 Patients, 1986-2009 15,000 12,000 Patients 9,000 umber of P 6,000 Nu Pediatrics (< 18 years old) Adults ( ≥ 18 years old) 3,000 0 0 '86 '88 '90 '92 '94 '96 '98 '00 '02 '04 '06 '08 √ Year
Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital Partnering in the T Transition to iti t Adult CF Care August 19, 2010 Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
The Goal: Perfection Developing a Sense of Self-responsibility Self-responsibility
Ideal Transition to Adult CF Care 21 Age nsibility Respon
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
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
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.
“The worst thing you can do for someone for someone you love is to do o lo e is to do that which they could and y should do for themselves.” — John Wooden
Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital Partnering in the T Transition to iti t Adult CF Care August 19, 2010 Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
Learn More… • Talk with your CF Team members y • “Building Life Skills to Manage CF” Web cast on CF Foundation's Web site on CF Foundation s Web site • NIH – www.medlineplus.gov • www hopkinscf org • www.hopkinscf.org • Kidshealth.org - search “transition”
Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital Partnering for Care Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
Partnering as an Partnering as an Adult with CF August 19, 2010 Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
How do you keep updated on current practices? t ti ? • 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
Members of CF Adult Team • Adult with CF and family • Doctor • Nurse • Nurse • Dietitian • Respiratory &/or Physical Therapist R i t &/ Ph i l Th i t • Social Worker &/or Psychologist • Clinical Research Coordinator
Partnering as an Partnering as an Adult with CF August 19, 2010 Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
Learn More… • Talk with your CF Team members • CF Foundation’s Web site CF Foundation s Web site
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
Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital Partnering for Care Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
Peter Mogayzel, MD, PhD Johns Hopkins Hospital Johns Hopkins Hospital Partnering when Thi ki Thinking about Lung b t L Transplantation August 19, 2010 Mi h Michael Boyle, MD l B l MD Johns Hopkins Hospital
Learn More… • Talk with your CF Team members y • CF Foundation’s Web site – Treatments/Lung Transplantation – Treatments/Lung Transplantation – Treatments/CF Care Guidelines
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 • United Network for Organ Sharing - U it d N t k f O Sh i www.unos.org
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 • Organ Donor.gov - www.organdonor.gov www organdonor gov • Share Your Life - www.shareyourlife.org
Partnering for Care Series
Partnering For Care: CF Foundation- Accredited Care Centers
Partnering For Care: Help Your Nurse Help Your Nurse Help You Thrive
Partnering For Care: Help Your Dietitian Help Your Dietitian Help You Thrive
Partnering For Care: Partnering For Care: Help Your Respiratory and Respiratory and Physical Therapist Help You Thrive Help You Thrive
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