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Navigating JA World


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Navigating the JA World presented by Peter Chira, MD, MS; and Nicole Carlson, PNP

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Navigating JA World

  1. 1. Navigating the JA world Peter Chira, MD MS Nicole Carlson, PNP Juvenile Arthritis National Conference 2012
  2. 2. The Journey Your crew Your equipment Your map Your destination Your community Detours and weathering the storms
  3. 3. Is this how you felt the first time you met us?
  4. 4. Your crew Pediatric Rheumatology Division Teaching institutions: what does that mean? Different levels of trainees  Attendings – MDs Board certified in Pediatrics and Pediatric Rheumatology  Fellows – MDs Board certified in Pediatrics and currently being trained in Pediatric Rheumatology  Residents (aka interns, housestaff) – MDs currently being trained in Pediatrics  Medical students – training to be medical doctors
  5. 5. Your crewNurse Practitioners/ Physician AssistantNurse specialists Clinical nurse specialists/ nurse practitioners – handle questions about patient care related information Research nurse/ research coordinator – handles pediatric rheumatology study related informationSocial WorkersAdministrative AssociatesClinic staff
  6. 6. Where We Live Because many pediatric rheumatologists also have teaching, research, and administrative responsibilities, we have two offices: CLINICAL and ACADEMIC  We see patients admitted in the hospital and in our medicine specialty clinic = CLINICAL  Our real homes are our administrative offices where we do research and deal with patient issues when not in clinic = ACADEMIC  All health-related questions should be directed to our academic offices, NOT our clinics  Remember- if we are in clinic seeing patients, this means we are not at our academic offices and often cannot answer calls until we return.  Also, some days we are not at clinic so just dropping by without calling probably does not work.
  7. 7. Your Medicine Family Tree You and Your Child Primary Pediatric Physician Rheumatology Team Physical Laboratory/ Other Therapist/ Ophthalmologist Social Worker Pharmacist SchoolOccupational Radiology subspecialists Therapist
  8. 8. Primary Physician Roles Please let us know your child’s PCP contact information and if you change providers. We attempt to keep the primary care provider (PCP) up to date on your child’s care. Please let us know if your child’s PCP is not getting our correspondences.
  9. 9. Primary Physician Roles  Continue to see your child’s PCP for primary care issues (well child checks, vaccinations, urgent care issues).  BUT, don’t hesitate to contact us for any questions about medications or illnesses.
  10. 10. Ancillary Services:Physical/Occupational Therapy Physical Therapy (PT): large muscle groups, lower body, and conditioning Occupational Therapy (OT): upper body, fine motor skills, activities of daily living If you get a PT/OT referral for your child make sure you find a PT/OT that has some experience with: 1. Children 2. Chronic illnesses 3. Rheumatologic illnesses (i.e. juvenile arthritis, dermatomyositis, lupus, etc.)
  11. 11. Ancillary Services:Physical/Occupational TherapyMake sure your child feels comfortable working with the PT/OT to maximize therapyHome programs are valuable but only work if your child does themFind a PT/OT that is closer to home
  12. 12. Ancillary Services: Pharmacy Fill all of your child’s medicines at the same pharmacy To get refills, contact your pharmacy at least 5 days before you run out and have them fax us a refill request Prior authorizations from insurance companies are needed for some medicines- this can delay start of treatment Tell us if a medicine is not covered on your insurance formulary- we can always change to another option if necessary Find out if mail order pharmacies are cheaper with your insurance; Consider big box pharmacy programs (Walgreen’s, Target for inexpensive generics) Often, injectable medications are administered under a different plan than your regular drug plans
  13. 13. Ancillary Services: Lab/Radiology When the labs/x-rays are done at facilities other than ours: please make sure the lab/x-ray results are faxed to us. please have the lab phone and fax numbers available Ideally, bring any copies of outside x-rays for our review at your clinic visit PPO: cost of services can vary widely HMO: Please check with your PCP/insurance company where preferred facilities are.
  14. 14. Ancillary Services: Ophthalmology  Be sure your child is being seen by ophthalmologist (MD) or a optometrist (OD) who has experience in looking for inflammation in the eye (uveitis).  If your child is old enough to sit still, an adult ophthalmologist can evaluate.  Make sure the ophthalmologist knows what medications your child is on (i.e. steroids, plaquenil)- this helps them know what to look for.  Have the eye doctor send us reports: our job is to work along with them!
  15. 15. Ancillary Services: Social Work Social workers are problem solvers and can help in a variety of situations from school to insurance to psychological support references.
  16. 16. School Issues Schools will accommodate for your child Extra time to walk to class, extra set of books, extra time to take tests, etc Individualized Education Program (IEP) 504 Plan Physical Education Adaptive PE
  17. 17. Other doctors Often, we rely on other doctors to help follow your child’s condition, like kidney, heart, lung, or brain and behavioral specialists We try to coordinate care and need your help to facilitate interactions by providing updated contact information of all your child’s doctors, especially if they are at other institutions
  18. 18. Your equipment
  19. 19. Dealing with insurance
  20. 20. Know Your Insurance Plan: Private HMO PPO Everything (or almost  Make sure we are a everything) goes “preferred provider” through your primary  Most labs/x-rays can be physician done at our facility Know your without extra charge authorization status  Watch out for higher (can take up 1 week) co-pays Make sure to find out  Prior authorizations where you can have needed for certain labs/x-rays done medications Prior authorizations needed for certain medications
  21. 21. Know Your Insurance Plan: Public Medicaid Health Savings Accounts Insurance coverage and  Often pay for services benefits varies from state to state until you have met deductible (typically Programs high) administration can vary  Funds collected are tax from county to county (HMO/managed care exempt versus PPO style)
  22. 22. More on Insurance (the past) Before changing insurance plans, make sure that a pre-existing condition is covered Be careful of out of pocket costs (high co-pays for visits and medications) Consider inquiring about a case manager in your insurance company for your child to help coordinate care Update your insurance information at every clinic visit For older teens and young adults- know that they can be covered under parents’ insurance if they are attending school full-time
  23. 23. Impact of the New Health Care Lawon Insurance: Obamacare Pre-existing conditions such as JIA/JRA cannot cause denial of coverage and premiums cannot be higher based on condition No longer can coverage be capped, nor can they drop coverage if there is a mistake on your application when you are sick For older teens and young adults can now be covered until age 26 under parents’ insurance regardless of school status Preventive services such as eye exams and immunizations should be covered without a copay for the visit
  24. 24. Special Insurance InformationPreviously known as crippled children’s services State programs that covers the treatment and care of children with certain physical and chronic health conditions and diseases, including juvenile arthritis. Can authorize and pay for specific medical services and equipment related to the management and care of that disorder Doctor services, hospital/surgical care, PT, OT, labs, x-rays, orthopedic appliances, and medical equipment.
  25. 25. Title V statute to State Programs forChildren with Special Health Care Needs(CSHCN)Each state has a different name to the programCoverage up to age 21Services provided vary by state, so if you move please be aware of differencesThis is a federally mandated program
  26. 26. Title V: Children with Special HealthCare Needs ts/ContactInfo/StateContactSearch.aspx Illinois Division of Specialized Care for Children (DSCC) Core Program Indiana Childrens Special Health Care Services (CSHCS) Missouri Children and Youth with Special Health Care Needs Program (CYSHCN)
  27. 27. Title V: Children with Special HealthCare Needs ts/ContactInfo/StateContactSearch.aspx Iowa Child Health Specialty Clinics Kansas Children and Youth with Special Health Care Need Nebraska Department of Health and Human Services
  28. 28. Pharmaceutical company- assistanceprogramsExamples Enbrel Support 1-888-4ENBREL (1-888-436- 2735) or ENBREL.jspx Humira Protection plan 1.800.4HUMIRA or assistance.aspx Remicade- Remistart 1-888-ACCESS1 (1-888- 222-3771) or
  29. 29. Your Map Diagnosis Treatment Remission
  30. 30. Medical Information  Where do we get our information? Peer reviewed journals (Arthritis and Rheumatism, Journal of Rheumatology, Pediatrics, New England Journal of Medicine, JAMA, Journal of Immunology) Conferences where up to date information is distributed though lectures and posters Textbooks (not as up to date)
  31. 31. How to search for Medical InformationTextbooks – sometimes outdatedMedical journals – sometimes difficult to interpret (even for us!)Internet – vast wealth of information (good and bad) Sample search
  32. 32. Web search Guidelines Look for reputable sources NIAMS/NIH Medical Centers Arthritis Foundation (or similar large groups) Look for list of authors/contributors to the website Make sure MD or equivalent (preferably pediatric rheumatology) Make sure updated in a timely manner
  33. 33. Who is reputable and reliable?All national medical groups have websites that list their members American College of Rheumatology American Academy of PediatricsYou can search the website to make sure they are members in good standingSince our subspecialty is small, you can ask us as well
  34. 34. Interpreting Medical Literature There are different ways medical information and data is presented to us: For testing medications, clinical trials are used  The most unbiased type of clinical trials are the randomized double blinded placebo controlled trial (gold standard) Drug Watch how they did Unblind and Patient analyze who did group better Placebo Watch how they did (sugar pill)
  35. 35. Interpreting Medical LiteratureWhen looking at medical literature: Be sure to identify what type of study they used. What the target population was? How many people were being tested? Be aware that statistics can make conclusions seem more significant that they really are. Also, know that negative studies are often under- reported in the literature- so just because there is nothing in the literature, it does not mean a study has not been done!
  36. 36. Your Destination
  37. 37. Inactive Disease and Remission Goals of treatment are to achieve inactive disease (no signs of inflammation, joint swelling, or damage) and maintain it for at least 6 months to then call it a remission We then strive to take away medicines to see it that remission continues long term Additionally, we strive to make sure that pain is controlled and that the quality of life of your child and you are optimal with treatment and management
  38. 38. Your Community
  39. 39. Find a support system Facing arthritis is challenging and how you, your child and your family deal and cope with it are very important issues Resources such as the Arthritis Foundation can hook you up and meet others facing the same issues, whether on a local or national level Join the JA Alliance to help others understand childhood arthritis alliance.php Ask your rheumatologists for other families to speak with about the diagnosis and treatments
  40. 40. Social media and networkingBulletin Boards/ Facebook groups are very useful as a source of support and communication in a communityEvery person is different and one person’s perspective may not be reliableTake “cure-alls” with a grain of saltBe careful of alternative or miracle therapies i.e. herbals are monitored by the FDA but under the Food section
  41. 41. AdvocacyYou and your family can become ARTHRITIS AMBASSADORS to let your elected officials understand what needs to get done to improve the care of kids with arthritis and related disorders ambassadors.php
  42. 42. Weathering the storms: FlaresWe always hope that children reach remission and never have a flareFlares do happen making it important to still follow-up with your regular doctor and rheumatologist periodically Underplaying symptoms or forgetting how the arthritis originally presented is not uncommon- always feel free to contact your rheumatologist’s office if something does not seem right
  43. 43. Weathering the storms: Difficult tocontrol disease Escalating medications can be frustrating and scary, especially when trying newer medications Keeping your child moving and active is ultimately the goal: we all need to keep that in mind especially when weighing risk and benefits of treatment/ management
  44. 44. Saying goodbyeUnless you are in a practice with a physician trained in pediatric and adult rheumatology, likely your child will at sometime will need to say goodbye to usPreparation for this transition will take years- start early to ready yourself and your child for this change, which even when it runs smoothly can be very difficult and emotional
  45. 45. Bottom LineAlways advocate for your childTry to organize a medical notebook for your childBe careful of what people say and what you read from bulletin boards, internet sites, and magazinesWhenever you have questions, please don’t hesitate to ask. The only bad question is the one that WASN’T asked.