Health Smart: Teens with Sickle Cell Disease Moving from Pediatric Care to Adult Care

Similar documents
Staffing Four Providers offering patient care each day Typically 2-3 Physicians paired with 1-2 Nurse Practitioners MDs are board-certified in Family

Pediatrics How-to Guide for TRICARE Beneficiaries. Readiness Better Care Trusted Care, Anywhere Best Value Better Health

Wabash Student Health Center

RSU 25 ADULT AND COMMUNITY EDUCATION Create Your Path to Success

PEDIATRIC CENTER FOR WELLNESS, P.C. CRYSTAL B. HOOD, M.D KLONDIKE RD SW SUITE 205 CONYERS, GA TELEPHONE FAX

(Please Print) PATIENT INFORMATION. Sex: Male Female Home phone no: ( ) City: State: Zip: Cell phone no: ( ) Occupation: Employer: Work phone no: ( )

DEPN AND GRADUATE NURSING MANDATORIES INFORMATION

COUNSELOR IN TRAINING PROGRAM FARM CAMP AT THE FARM INSTITUTE

DMACC INSTRUCTIONS FOR COMPLETING STUDENT HEALTH AND IMMUNIZATION RECORD

Student Pre-Clinical Requirements 2017

ATHLETIC TRAINING MANDATORIES INFORMATION

Your child s health care notebook

Monday, July 23, 2018*

TEEN VOLUNTEER APPLICATION. Last Name, First Name, Middle Initial. Home Address ~ Number, Street, Apt. # City State Zip Code

If you would like to volunteer in the Gift Shop as part of the Hospital Auxiliary, please call for additional information.

Adult Health History

Health History and Examination Form for Children, Youth and Adults Attending Camps

Patient Centered Medical Home 2011 Standards

MEDICAL LABORATORY SCIENCE MANDATORIES INFORMATION

A Publication for Molina Healthcare Members Spring 2005

Greetings! Sincerely, St. Margaret s School Health Center

If you would like your child to participate in the Life Health Center School Wellness Program, please complete pages 1-5.

ATHLETIC TRAINING MANDATORIES INFORMATION

GP online services for carers, including young carers Patient Guide

REGISTRATION FORM. Parent Name Relationship to child. Address (if different) . Place of employment Hours - Work phone

PATIENT RESOURCE GUIDE SIMPLY THE RIGHT CARE

Early and Periodic Screening, Diagnosis and Treatment

Thank you for your interest in the Summer Youth Program at Doctors Community Hospital!

Date: PATIENT REGISTRATION Chart # PLEASE PRINT FILL OUT ALL AREAS PATIENT INFORMATION CHILD S NAME BIRTHDATE SSN SEX CELL PHONE# (14 YRS & OLDER)

Welcome! 2128 Spears Rd, Suite 300 Houston, TX 77067~ Fax: ~ Rev 3/20/14

PATIENT S NAME: LAST NAME: FIRST NAME: MI: DOB: MARRIED: SINGLE: SOCIAL SECURITY: HOME ADDRESS: APT# CITY: STATE: ZIP: CELLULAR PHONE:

*** Program Guidelines ***

Health Care Directive

(907) PHONE (907) FAX

Vaccine and International Travel Health Questionnaire Please print clearly.

Advance Directives. Advance Care Planning & Required Forms. Person Appointing Patient Advocate: Print name Date of Birth Date signed Phone contact(s)

Planning Ahead: How to Make Future Health Care Decisions NOW. Washington

Student Health Form Howard Community College Health Science Division

CAMPER HEALTH HISTORY FORM1

Molina Healthcare of Ohio Marketplace Plans

Southwestern College Nursing & Health Occupations Programs MEDICAL EXAMINATION FORM

centacare outside school hours care additional child enrolment forms child care services

PRE-CLINICAL HEALTH REQUIREMENTS (PCHR) GRADUATE NURSING

Health Record Health Services 1025 North Broadway, K-254 Milwaukee, Wisconsin Phone: Fax:

Welcome to BCHC Your Medical Home

Back-Up Care Advantage Program Registration Materials

Guide to CastleBranch

NURSING STUDENT HEALTH & IMMUNIZATION RECORDS

Anthem Blue Cross. CCHCA Physician Handbook (7 th Edition) Updated 3/15

Q&A Healthcare Power of Attorney Save Money, Time and Stay in Control Jim Schuster, Certified Elder Law Attorney Member of the National Academy of

Advance Directive for Mental Health Care

Palmetto Health Tuomey Student Volunteer Application Application to be completed by the student, NOT the parent. Full Name: Phone: (

Benefits at a Glance. Vectrus Systems Corporation Policy Number: 04804A. OAP Global Plan

2018 TCDN SUMMER CLUB CAMP REGISTRATION FORM

ALFRED ALINGU, MD INTERNAL MEDICINE

Page 1 of 6

Jacksonville State University Lurleen B. Wallace College of Nursing and Health Sciences Health Appraisal Form

From: AR Center (Arkansas Center for the Study of Integrative Medicine)! PLEASE READ FIRST!!

Practice Limited to Infants, Children, & Adolescents

Health Care Directive

Health & Safety Packet for Incoming Students

Physicians Plus MEMBER NEWSLETTER

Sage Medical Center New Patient Forms

STUDENT NAME: Date Completed:

PATIENT INFORMATION Please Print

Thank you for choosing Centacare for your child care needs.

2017 SEMI-MONTHLY PREMIUMS. Employee and Spouse $ Employee and Child(ren) $ Family $332.12

Staci F. Condrey, MD Robert D. Roycroft, MD Samantha Lane, DO

Resident Rights in Nursing Facilities

School of Health and Human Services Pharmacy Technician Program Application Package

My Voice - My Choice

Health Requirements for Students. Updated 1/23/18

Advance Directive. including Power of Attorney for Health Care

School Based Health Centers: Sharing Our Stories. Healthy Kids Make Better Learners. Connecticut Association of School Based Health Centers

Marsh and McLennan Companies 2018 Overview: Best Doctors, Health Advocate, Cigna and MSK Direct October 12, 2017

2 North Meridian Street Indianapolis, Indiana March 1999 Revised May 2004 ADVANCE DIRECTIVES YOUR RIGHT TO DECIDE

All but Part A Deductible. Medicare Part A Deductible. Nothing. Inpatient Hospital All but Part A Medicare Part A Nothing.

HIGHLAND MEDICAL INFORMATION FORM

Patient information leaflet. Royal Surrey County Hospital. NHS Foundation Trust. Consent to Treatment

LAST NAME: FIRST NAME: MI: STREET ADDRESS: CITY: STATE: ZIP CODE: DOB: AGE: SEX: M F: TELEPHONE#: ( ) CELL PHONE#: ( ) SSN#: MARITAL STATUS: S M W

Psychiatric Advance Directives Durable Power of Attorney for Mental Health Care

OUTSIDE SCHOOL HOURS CARE additional child forms child care services

ADMISSION PACKET. School of Nursing BSN - DNP Program

CITY OF SLIDELL S2630 NON-GRANDFATHERED BENEFIT SHEET

MOODY BIBLE INSTITUTE HEALTH SERVICE DEPARTMENT

Patient Registration Form

Camper Health Form Camp Y-Owasco

HEALTH HISTORY QUESTIONNAIRE

Applicant Name (Please print) Last First MI. Northeast State Community College assigned Student ID Number: City: State: Zip Code:

National Directed Enhanced Service for Childhood Immunisations

NOTICE OF PRIVACY PRACTICES Revised

NEW PATIENT QUESTIONNAIRE

Training Work at least one shift of on-the-job training with an experienced volunteer in your assigned service area.

Health Care Directives

Amherst Central School District First Choice Health Plan. Non-First Choice Providers and Out-of-Network Providers

Welcome to the Office of Dr. Sam Van Kirk!

Sick Kids' Family Journal

Advance Directives. Planning Ahead For Your Healthcare

ZooCrew Registration Packet Summer ZooCrew

FREE Know your rights

Transcription:

Health Smart: Teens with Sickle Cell Disease Moving from Pediatric Care to Adult Care

Produced by St. Jude Children s Research Hospital, Departments of Hematology, Patient Education, and Biomedical Communications. Funds were provided by St. Jude Children s Research Hospital, ALSAC, and a grant from the Plough Foundation. This document is not intended to take the place of the care and attention of your personal doctor. Our aim is to promote active participation in your care and treatment by providing information and education. Questions about individual health concerns or specific treatment options should be discussed with your doctor. For more general information on sickle cell disease, please visit our Web site at www.stjude.org/sicklecell. Copyright 2009 St. Jude Children s Research Hospital

Health Smart: Teens with Sickle Cell Disease Moving from Pediatric Care to Adult Care Moving from pediatric (children s) care to adult care can be one of the hardest changes you will face as a patient with sickle cell disease. As a family you must find a balance between concerned parents who want to handle all the details and teens who want to be completely independent. Many issues must be considered when moving from a pediatric hematologist (sickle cell doctor) to a hematologist who treats adults. This booklet will help you address some of these issues. Feel free to ask the St. Jude staff questions you might have about making this transition (change). At the back of the booklet are several pages for you to write notes and questions. You will also find a glossary of terms that you might encounter during this time of change.

What does making a transition to adult care mean? Making a transition to adult care means changing 2 from your pediatric hematologist to a hematologist 3 who treats adults.

Why do I need to change doctors? I like my hematologist. Changing from a pediatric doctor to an adult hematologist needs to happen for many reasons. Most children s hospitals do no treat anyone 4 older than 18. 5 At age 18, you are legally an adult. Your body is changing; caring for a child is much different than caring for an adult.

How do I transition to adult care? You need to be HEALTH SMART! 6 7

What is HEALTH SMART? HEALTH SMART is being able to make decisions about your medical care. You should know: How sickle cell disease affects your body; 8 9 How to ask questions about your treatment; How to make it through the health care system as an adult; and How to get support when you need it.

What do you mean by know how sickle cell disease affects my body? Your doctor and nurse case manager can help you understand. You can begin by knowing your medical history. 10 11 Know what type of sickle cell disease you have, and what complications you have had in the past. Know what medicines you take and why. Keep a copy of your medical record for your files.

Why do I need a copy of my medical record? You need a copy of your medical record for several reasons. You need to know what is in your medical record. You need to make sure your medical record is 12 complete. 13 You need to give your adult hematologist a copy of your medical record. Your adult hematologist cannot make informed decisions about your care without a complete medical history.

How will I know if my medical record is complete? Your medical record should have the following information: Name Transfusion History Date of Birth Recent Labs Type of Sickle Cell Disease Allergies 14 Recent Medical Problems Current Medicines 15 Ongoing Problems Immunizations Past Medical History Past Surgeries Family & Social History Physical Exams Don t forget to add to your medical record each time you visit your health care provider.

What else do I need to have to make the transition to adult care? You should have the following documents: A medical identification (ID) card 16 17 A durable power of attorney for health care A health insurance card An up-to-date immunization record

What is a medical ID card? A medical ID card is a card that you carry in your wallet. You should carry it with you at all times. The medical ID card should contain the following details: Name Date of Birth Type of Sickle Cell Disease Allergies 18 19 Average Hemoglobin Emergency Contact Information Name of Hematologist Other (for example, current treatment of major complications) Information current as of:

What is a durable power of attorney for health care? A durable power of attorney for health care is a document that allows someone to make health care decisions for you if you are unable to make them for yourself. This can be a spouse, parent, or friend who is 18 years or older. Before choosing someone to name in your durable power of attorney for health 20 21 care: Discuss your medical views with the person; and Make sure that the person you choose is comfortable making medical decisions for you if you cannot make them for yourself. Give a copy of your durable power of attorney for health care to your doctor and the hospital whenever you are admitted.

I do not have a copy of my insurance card, How do I get one? Your insurance carrier will issue you a copy of your insurance card. Give them a call if you do not have one. Carry your insurance card with you at all times. Also, learn the terms of your insurance policy: Do you have a co-pay for office visits and visits to the emergency room? 22 23 Which hospitals take part in your insurance plan? What happens if you are traveling out of town? How does your insurance handle payment? Do you need pre-approval for surgery or specialist care?

Will my health insurance change when I turn 18 years old? Yes, usually health coverage changes when a patient turns 18. If you are covered by a state health care plan, you will have to re-apply at 18 years of age. If you are covered by your parents health insurance, coverage may stop at 18 unless you attend college. 24 25 If you attend college, you may be able to get discount health insurance through your school. If you purchase health insurance, make sure it does not have a pre-existing condition clause. If you begin working, you may be covered under your employer s medical plan. Talk to the social worker if you have questions about insurance coverage.

What immunizations do I need before I transition to adult care? In addition to your childhood immunizations, you should have the following: Hepatitis A MMR Booster Hepatitis B * Polio Booster Prevnar * Tetanus-diptheria-acellular Pneumococcal Vaccine * Pertussis Booster 26 27 Influenza vaccine * Meningococcal Meningitis* Optional: Varicella (chickenpox) HPV vaccine (if you are female) You can get the vaccines marked above with * at the St. Jude Sickle Cell Clinic. You can receive the other vaccines at your primary care doctor s office.

How do I choose a hematologist who treats adults? Your nurse case manager can help. Your case manager will give you a list of hematologists in the area who treat adults. Your case manager will invite you to take part in a teen transition tour of adult hematology offices in the area. 28 29 Your case manager can help you schedule your first appointment. With your consent, your records will be sent to your new hematologist s office before your first visit. Make a list of questions to ask during your first visit.

What is the teen transition tour? This is a tour that visits two adult hematology offices in the Memphis area. It is provided free of charge. Teens and their parents are welcome to attend. Transportation is provided. It is a half day tour with free lunch at the end. 30 31 There is a discussion period during lunch to answer your questions. The tour is scheduled one (1) time every 3 months. Your case manager will schedule you for a tour shortly before you turn 18. Ask your teen case manager for more details.

Can t my parents do this for me? At 18 years old, you are a legal adult. You have to give permission for your parents to see your medical records or to talk to your doctor about your treatment. 32 33 At age 18, you have to sign all medical documents. Your parents cannot sign for you. You will have to begin to show your independence by taking responsibility for your health.

What if I am not ready to take on all of this responsibility? You will not lose your support system! You will start becoming independent at 18, but your parents can help you until you are comfortable making decisions on your own. Your current support system is still in place: 34 35 Family Friends Social workers Your minister Your doctor and health care team

What are some of the differences between pediatric and adult care? You will become your own self advocate. Adult hematologists will not schedule or re-schedule appointments for you. That is your responsibility. Doctors who treat adults may not be able to spend much time with you. Write down what you need to tell your doctors in advance. 36 Make sure your care is coordinated: 37 Ask your hematologist to send a copy of the dictation to your internal medicine doctor. The dictation is the note written in your medical record after each visit. You should ask the hematologist to do this every time you visit. Ask your hematologist to mail you a copy of the dictation after each visit for your medical record file at home.

Why do I need an internal medicine doctor if I see an adult hematologist? You need an internal medicine doctor to take care of non-sickle cell health issues. Your insurance policy may require an internal medicine doctor to give you a referral to a hemtologist and other specialists. 38 39 The internal medicine doctor will give you annual physicals. Your internal medicine doctor usually will coordinate care between all of your specialists. It is like having a pediatrician and a pediatric hematologist.

How do I become a self advocate? By being HEALTH SMART! If you follow the transition information in this booklet, you are well on your way to becoming a self advocate. Do not neglect your health. Continued care is important. If you wait until you have a problem, it might be 40 41 too late. As an adult, you have to think ahead and try to prevent problems before they occur. See your new hematologist on a regular basis. Do Not Take Your Health for Granted Be HEALTH SMART!

Glossary Terms you may encounter during your transition to adult care Durable Power of Attorney for Health Care A legal document that allows another person to make medical decisions for you if you are unable to make them for yourself Health Insurance A plan to help pay for hospital and doctors bills Health Literacy The ability to understand medical information and make health decisions Hematologist A doctor who specializes in treating sickle cell disease and other red blood cell disorders. Internal Medicine Doctor Also called a general practitioner. A doctor who treats all body systems and usually makes referrals for specialized care. Medical Consent Form Your agreement to have medical records released or to have medical treatment Medical History A record of a patient s past and present state of health Medical Record A written account of a patient s treatment history and exams Medical Record Confidentiality Your medical information that is kept private by your doctor Self Advocacy Means making your own health care decisions and speaking in support of yourself Sickle Cell Disease A blood disease that causes red blood cells to change into a banana shape, which causes medical problems Transition to adult care Changing from a pediatric (children s) hematologist to a hematologist who treats adults. Notes

Notes

12/09 Biomedical Communications For ordering information contact: St. Jude Children s Research Hospital 262 Danny Thomas Place, Mail Stop 800 Memphis, TN 38105-3678 901.595.5684 www.stjude.org/sicklecell

2024 © careersdocbox.com Privacy Policy | Terms of Service | Feedback