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The Transition of Chronic-Care Patients from Pediatric to Adult Providers (focusing on Heme/Onc)

The Transition of Chronic-Care Patients from Pediatric to Adult Providers (focusing on Heme/Onc). Meg Browning Med/Peds group seminar series November, 2004. Assumption: This must happen. Are there rules about this? Is it appropriate to have 30-year-olds and 4-year-olds in the same clinic?

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The Transition of Chronic-Care Patients from Pediatric to Adult Providers (focusing on Heme/Onc)

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  1. The Transition of Chronic-Care Patients from Pediatric to Adult Providers(focusing on Heme/Onc) Meg Browning Med/Peds group seminar series November, 2004

  2. Assumption: This must happen • Are there rules about this? • Is it appropriate to have 30-year-olds and 4-year-olds in the same clinic? • The same hospital? • Are pediatricians (however specialized) competent to provide care to 30-somethings? How about 50-somethings? (Let’s get back to that later.)

  3. What is standing in the way? • Patient/provider attachment • Neurocognitive ability of the patient • Perceived poor compensation for care of chronic issues (adult hospitals may not wish to open that sickle cell clinic) • Parent roles/wishes • The “patient role” – habit of being cared for • Availability of trained providers (the bit where the lifespans are really different than they were 10 years ago)

  4. Goals to be met(there is a WEALTH of this on the Internet – timetables, checklists, etc.) • Self-advocacy • Independent health care • Sexual health • Psychosocial support • Educational and vocational planning • Health and lifestyle issues

  5. Social hurdles • Being seen without parents • Taking “ownership” of illness, meds, etc. • Insurance • Employment • Lack of services

  6. Moral: Chronic care programs for adult patients are in every bit as great a need of good social workers as the peds programs.

  7. 2nd moral: Vote.

  8. Medical care (that Pediatricians may not do as well) • PAP smears, Mammograms/screening • Family planning / (contraception) • Prostate health • Colon cancer screening • (Tobacco/alcohol use) / lifestyle issues • Heart/vascular disease

  9. HgSS: late complications • Retinal hemorrhage • Sequellae of stroke • Osteonecrosis • Renal and Cardiac dysfunction • Reproductive problems (esp. males) • Pain, pain, pain • Drug addiction?

  10. Hemophilia: late complications • Hepatitis (chronic) • Bleeds (kind of never goes away) • Joint damage • Pain and pain meds

  11. Procoagulant disorders • Ongoing care • Increased risks with hormone Rx • Implications for pregnancy • Fetal losses • Teratogenic medications • Family planning (hereditary)

  12. Onc/Transplant: late effects(highly disease- and therapy-specific) • Assuming that the basics like growth, nutrition, and thyroid are already covered • Sterility • Cataracts • Cardiac and renal dysfunction • Osteopenia/osteoporosis • Second malignancies (skin, breast, marrow, other radiation field)

  13. Sterility • Males: sperm bank before making them that way. Everything else is a bit more iffy. • Females • GnRH analog during chemo • Other hormone Rx during chemo (other benefits) • Egg harvest • Ovarian tissue harvest • A few words on the protocol here for that last one

  14. Suggestions • Have defined “steps” • Have providers meet (all that info we don’t write in the chart, such as “knowledge of the family”) • 1st new visit while well • Help get med and imz records • Start early in giving patient ownership of disease • New provider first sees patient in old setting

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