Duke Adult Sickle Cell Center

Duke Adult Sickle Cell Center Duke Adult Sickle Cell Patient and Family Medical Director Regina D. Crawford, MD Handbook Clinical Research Director Nirmish Shah, MD Director, Transition Clinic Program

Project Director, Marilyn J. Telen, MD N.C. State Sickle Cell Program

Nurse Practitioner Ranitha Dep, ANP-C 2N Clinic Nurse Practitioner Patricia Prentice, NP Sickle Cell Day Infusion

Clinical Social Worker Carlton Rutherford, MSW, LCSW

Clinical Psychologist Dr. Abigail Keys

Triage/2N Clinic Nurse Lisa Barber DUKE UNIVERSITY MEDICAL CENTER DUMC Box 3939 Staff Assistant Sandra Claiborne Durham, North Carolina 27710 Phone: (919) 684-6464 Clinical Research Coordinator Sonja Hunter Fax: (919) 681-6174 Clinical Trials Assistant I Christle Cameron

Business Manager Linda Wilkins Division of Hematology

Administrative Assistant Grace Tisdale Dear Patients and Families: This version of the handbook is the first to include information about our current clinic policies, goals, patient expectations and Welcome to the Duke Adult Sickle Cell Clinical Service of the goals for care. Our focus is to ensure every individual has access Duke University Sickle Cell Center. We look forward to a long, to faster, better, affordable and coordinated health care. professional and friendly relationship with you. The Center offers comprehensive services to patients with sickle cell and The redesign of the clinic includes: other hemoglobinopathies throughout North Carolina.  Relocation: All Clinic services are now located in Duke South Clinic 2N area. We now have daily clinic Duke Sickle Cell Center activities include medical services and sessions to address acute and long term sickle cell the Sickle Cell Day Hospital, basic and clinical research, related issues. screening and testing, social services, educational services and  Clinic appointments are now made at a centralized community outreach. center instead of via the office. Call 919-620-5300 for all appointments. The main number for the Center is (919) 684-6464. You may  SC Triage Nurse: Available Monday-Friday from 8:00 call Monday through Friday between the hours of 7:30 a.m. - a.m. to 4:30 p.m.. Call 919-681-3741. The Triage 4:00 p.m. This is not the appointment line. When you call, Nurse responds to all acute and long term medical please – listen to the recording which lists different phone concerns of patients, family and providers. Other acute extensions for you to choose from, depending on the purpose of and chronic sickle cell related symptoms will be your call. Please do not hang up. Follow the directions that are managed in the outpatient clinic. given on the menu for prescriptions, appointments, cancellations  Sickle Cell Day Hospital: Open Monday thru Friday and for triage. 8:00 a.m. to 8:00 p.m., Saturday 8:00 a.m. to 4:00 p.m. to be used to treat acute and uncomplicated pain. It may Triage operates Monday to Friday from 8:00 a.m. to 4:30 p.m. help to avoid Emergency Department (ED) visits and To contact the triage nurse call 919-681-3741 directly. Triage hospitalizations and provide timely short term pain handles calls for referrals, consultations, lab results, letters, management. The Day Infusion Unit is located at 2A. forms and other urgent issues. Messages may be left on this line Treatment is by appointment only. Latest appointment for these concerns and will be answered within 24 hours. If you is 3:00 p.m. Mon-Fri, 11:45 a.m., Saturdays. You are having an emergency, call 911. must first call the Sickle Cell Infusion unit provider to discuss symptoms and plan at 919-681-3753. Please Occasionally, all members of the team may be out of the office leave message with valid phone number and the or in a meeting. You may leave non–urgent messages with your provider will call you back. The Infusion Center can name and valid working telephone number, and best time to schedule you for same day appointment for pain return your call during business hours.. Someone will respond to management, hydration and transfusion. you as soon as possible or no later than the morning of the next  Transition Clinic: Held by Dr. Nirmish Shah on business day. Mondays from 8:00 a.m. – 1 p.m. This clinic is directed to those patients 18 to 25 years of age that If you are less than 18 years old, please contact the Sickle recently transitioned from Pediatrics to Adult care. Cell Pediatric Center at 919-684-3401.

Sincerely, The Sickle Cell Staff Our mailing address is: medical payment plan (Insurance, Medicare, Medicaid, State Sickle Cell Program, TRICARE, other) to all clinic visits and Duke University Comprehensive Sickle Cell Center: make sure that your Primary Care Physician (PCP) or prior DUMC Box 3939, Durham, N.C. 27710 physician, has forwarded your medical records to us. This or requires your signature for a release of information. 315 Trent Drive, Suite 261, Durham, NC 27710

CLINIC INFORMATION Laboratories: The Sickle Cell Clinic is located at 2N on the second floor of All patients except for those with port cath scheduled for Duke South building. Patients are seen daily on Monday-Friday blood tests should check in at area 1D in Duke South before by appointment. Contact the triage nurse for either same day or arriving to their clinic appointment at 2N. For each routine next day appointment to be evaluated for sickle cell related visit, you can expect to have labs drawn. Please arrive one-half symptoms and pain episodes. Please call as early as you hour before your appointment. Check in at Clinic 1D and when realize you will need treatment. Daily appointments are labs are completed report to Clinic 2N. available per schedule below for add-on visits through triage: Monday 8 a.m. to 12 Noon If you have an appointment for Lab and Leave, or labs only, Tuesday 8 a.m. to 12 Noon check-in at Clinic 1D. You will not need to come to 2N unless Thursday 8 a.m. to 12 Noon you also have a routine or acute visit scheduled. Friday 8 a.m. to 12 Noon If you have a port and you are scheduled for blood tests, you If you are having severe pain or other problems associated with should check in at clinic 2A (DSIC) before arriving to 2N. your sickle cell disease, you should be seen during the regular Please arrive 1 hour prior to your scheduled appointment to sickle cell clinic, at the Sickle Cell Infusion Unit or evaluated in allow for lab draws and proper care of your port. the emergency department. We will be happy to assist the emergency department staff in assessing you. The emergency COMPREHENSIVE SERVICES department should not take the place of your regular clinic visit. We believe that comprehensive medical care means not only Established patients actively seen in clinic within 12 months and treating all medical complications of sickle cell disease, but also for hospital f/u will generally be seen after hospitalization within early detection, prevention, social support and education as well. a week with the nurse practitioner. For routine visits, you may be To accomplish this, patients are seen periodically for preventive scheduled with the nurse practitioner. You may request to be care and annually to undergo a comprehensive evaluation. This seen by the hematologist (MD) if you have specific questions includes examination of the main organs including, heart, lungs, regarding your medical care. eyes, joints and laboratory tests to monitor the functions of the heart, lungs, liver and kidneys. This may include referrals to Late Policy: Please note that if you are 30 minutes late getting specialists in these areas for ongoing care. Attention is also to your appointment you may have to reschedule. given to social and educational needs. Please contact us if you wish to discuss these aspects of comprehensive medical care or if New Patients: If you are new to the area, have not been seen in you have any questions concerning your test results. the sickle cell clinic in the past 12 months you must see our clinical social worker first. Please, bring information on your what to expect from us and our expectations of you while on these medications.

PRESCRIPTION DRUGS AND CLINIC Please be advised that the behaviors listed below will result in immediate suspension of our prescribing narcotics for you: Patients are encouraged to address all prescription needs during  Changing or forging a prescription. regular clinic visits. Call ahead about these prescriptions to  Using your prescription medication for purposes other ensure you will receive them on a clinic visit. However, we do than as intended such as taking more than prescribed understand that there are times when needs arise between clinic or selling them for monetary gain. visits. We recommend that if you are running low on any  Using illegal or controlled substances including medication(s) that you call the Prescription line (919) 684-0684 Marijuana, cocaine, crack, PCP, Ecstasy, etc. one week ahead of time and leave a message. If you are in need  Failing to keep the Duke physician informed of of a prescription for the following types of medications (folic prescriptions obtained from other physicians including acid, hydroxyurea, blood pressure medication, etc.) and want the hospital, ED or private physicians. it/them to be called in to a pharmacy, please state the name of  Failing to comply with pain management the medication, dose, pharmacy name and phone number. We recommendations by sickle cell clinic or pain clinic will call the pharmacy within 72 hours of your request. providers

Paper Prescriptions are available for pick up at the 2N Sickle EMERGENCY COVERAGE Cell Clinic (not the sickle cell office) only on Mondays, Wednesdays, and Fridays between the hours of 9:00 a.m. – 4:00 p.m. Prescriptions for your Pain Medications (Oxycodone, In case of an urgent need during clinic hours call the TRIAGE OxyContin, MS Contin, Fentanyl patch, Methadone, etc.) service at (919) 681-3741 before coming to the clinic. Every CANNOT be called in to the pharmacy. You must have a effort will be made to see you on that clinic day. However, if paper prescription. You will also be required to sign a form we are unable to see you on that day, we may recommend listing up to three delegates to pick up your prescriptions. They further evaluation in our emergency room. If you have an acute must have photo ID. Note: ALL prescriptions requests including problem outside regular office hours and would like to discuss narcotics will be filled within 72 hours of your request. it with one of the physicians, please call (919) 684-8111, let the operator know that you are a sickle cell patient and ask Lost or stolen prescriptions WILL NOT be rewritten without for the adult hematologist on call or Dr. Regina Crawford. The a police report. physician on call will call you back as soon as possible.

Please remember that if you are having increasing pain, You may also go directly to the Emergency Department on the fever, chills or shortness of breath you MUST CALL Triage first floor of Duke North. On arrival to the Emergency to be seen in the clinic or go immediately to the ER. In Department, you should tell the receptionist that you are a addition, if you need medical services other than a prescription, patient followed at the Duke Sickle Cell Clinic regardless of the please make an appointment for a regular clinic visit by calling cause or nature of your emergency. 919-620-5300.

If you are taking long acting medications such as OxyContin, MS Contin, Methadone, Fentanyl patch, etc. you will be asked to sign a Pain Agreement. This agreement will tell you exactly COMMON EMERGENCIES WHICH 4. All female patients should have a gynecological evaluation every year. DEMAND IMMEDIATE ATTENTIO N: 5. Get an annual influenza vaccine (Flu shot) and a Pneumococcal vaccine every 5-7 years. Fever higher than 101.5; 6. See an ophthalmologist for an annual eye examination Acute pain, not relieved by pain medications, fluids, and bed 7. Refrain from smoking and using any illegal drugs. rest 8. Avoid excessive use of alcohol. Increased sleepiness or tiredness; 9. Pursue your vocational goals. Vomiting and dehydration; Neurological symptoms, such as seizures, weakness or numbness in arms and legs, severe headaches, marked WHAT WE EXPECT FROM YOU dizziness, or visual changes; Acute chest pain or difficulty breathing; We hope to provide you and your family with the best medical Priapism (painful erection) lasting longer than 30 minutes care possible. Your feedback and advice are always welcome. (discuss specific guidelines with your doctor). A few small but important contributions on your part will help us tremendously in delivering quality care. All Emergency Department visits should be followed by a clinic visit. This will assist us in providing you appropriate 1. If you cannot make a scheduled appointment, please call the follow-up within 1 week of your ED visit, including detecting Clinic Appointments Hub at 919-620-5300 as soon as and treating related complications. Immediately following possible so that they can reschedule that time for another discharge from the Emergency Department, please call the patient and make a new appointment for you. Remember, if Appointments Hub at 919-620-5300. you are more than 30 minutes late you will be asked to reschedule. HEALTH MAINTENANCE 2. Always carry your medical coverage information with you when you go for any medical appointment, ED visits and Health maintenance includes prevention, early recognition and hospital admissions. This will enable us to provide more treatment of complications, and continuing patient education. effective service to you and your family. Well-patient visits provide a better setting for the development of effective health provider-patient relationships. The 3. Please keep us up-to-date on your address and phone development of such relationships may result in fewer number(s) including an emergency phone number and a emergency department visits and hospitalizations. Therefore, next of kin contact information. This will greatly we encourage you to adhere to the following suggestions: improve our communication(s) with you. 1. Have regular medical evaluations at least every 6 months by a Primary care provider. (General Internal 4. Try to be seen for general medical problems by your PCP Medicine/Family Medicine Providers) for routine and in the sickle cell clinic for sickle cell related issues, screenings such as blood pressure checks, screening for whenever possible. We discourage using the Emergency diabetes, cholesterol, and routine cancer screenings as you Department for routine care and health maintenance. get older (i.e. mammograms, colonoscopy,) The ED does not 2. Have regular specialized sickle cell medical evaluations offer comprehensive services and should be reserved only for every 6 months and more often if you are treated with true emergencies which develop outside of clinic days. Hydroxyurea or chronic pain medications. 3. See a dentist every year. 5. You are encouraged to keep your appointment w/referrals. make an appointment to see the social worker on Mondays and If you cancel or no show more than 3 times it is extremely Wednesdays from 9 a.m. to 12 p.m. difficult to get you in and it puts your health care at risk. MEDICAL INFORMATION REQUESTS AND 6. You are strongly encouraged to sign up for Duke My Chart. This allows you the ability to request refills, access LETTERS to lab results, request appointments and contact with provider. There is an app available for MyChart as well. An authorization to release medical information form will need See HUC in clinic for more information. to be signed by the patient to release the information to whom you have designated to receive it. We will need two weeks to Remember, the Sickle Cell Center is here to serve you and your complete the process of releasing the information. The name family. If you are happy or unhappy about something we are and address of the person, company, or agency that the doing, please let us know. We will continue to do everything we information is to be sent will be needed. If you prefer to have can to meet your needs. the information faxed, please provide us with that number also. These requests can be made by dropping off in Clinic 2N. CLINICAL SOCIAL WORK If you are requesting your medical records to be forwarded to another facility or medical provider, please contact the Medical Records The Center provides clinical social work services to patients and Information Release Unit here at Duke University Hospital, Medical families who find themselves faced with challenges related to Records Information Release Unit, DUMC Box 3016, Durham, NC sickle cell disease. Clinical social workers help with a variety of 27710 by mail or at 919-384-7119 by phone to make your request. issues including:  Emotional and psychological distress SUPPORT SERVICES  Grief, loss & bereavement  Difficult family or social situations Many patients and their families become emotionally worn out  Medical crisis and adjustment to illness from the problems associated with sickle cell disease.  Substance abuse assessment and referral Occasionally, patients or family members become stressed and  Family violence & abuse even depressed. These feelings are completely normal and common. We are fortunate to have a team to help you and your  Guardianship family cope with these feelings. Many families benefit from group and/or private counseling sessions. If you are Clinical social workers also provide case management services, experiencing difficulties with school, employment, or the such as: demands of daily living, our staff is readily available to help you  Assist with social security benefits application process address these issues and/or refer you to the appropriate health  Medicaid application process care professional. Please ask to speak with our social worker or  Medication and transportation services one of our staff by phone or during a clinic visit. You may also schedule an appointment in clinic with Dr. Abigail Keys., All new patients are seen by the sickle cell clinical social clinical psychologist. She is in the sickle cell clinic on Mondays worker prior to being seen by the provider. In order to speak to and Wednesdays. You can also see her at her alternate location the Adult Sickle Cell clinical social worker, you may call the located at the Duke Pain Clinic near Duke Regional. Sickle Cell office or make a request with the nursing staff or receptionist in Clinics 2N and 2A. Established patients may also SUPPORT GROUP Emergency Department and Duke Hospital: Assisted parking (free of charge) is available in the ER and as an inpatient at Duke The Center has an active patient/family support group located in North for patients who drive alone or with one accompanying Durham. The support group meets on the third Saturday of relative, if continuation of care results in a hospital admission. every month from 11:00 a. m. to 12:30 at Lincoln Community For direct admission to Duke North Hospital, Valet parking is Health Center, First Floor (lower level) Conference Room A; the least expensive means of parking. For other requirements, 1301 Fayetteville Street, Durham, NC 27707. It is a voluntary please discuss with the discharge person or patient resource organization run by adult patients with sickle cell disease, manager. parents and families of children with sickle cell disease and interested others. At scheduled meetings, issues relevant to patients and families are discussed and guest speakers are often ADOLESCENT TRANSITION TO ADULT invited to address specific topics. Patient advocacy for your CARE health care needs is often a topic of discussion. If you or your family members are interested in attending these meetings, Patients are usually referred to the Adult Clinic from the please call the office for more specific information. We also Pediatrics Clinic around the age of eighteen (18). The pediatric have listings of other support groups available around the state clinical staff, in conjunction with the patient, determine the which can be made available upon request. appropriate time for transition.

GENETIC COUNSELING SERVICES This transition process is very important and must be handled with care for several reasons: Sickle cell disease is a hereditary illness which is passed on from  Currently, transitioning patients are scheduled, when parents to children. Many patients and their families do not possible, in the Transition Clinic held on Monday completely understand how sickle cell disease is passed through mornings. This is planned to smooth the transition and genes. If you would like to ask any questions about the genetics to allow for the pediatric/adult hematologist to facilitate of the disease or receive more information of a specific nature, the transition. please ask for an appointment with a member of our staff or a  The transition clinic is planned to reduce the emotional referral to the state genetic education counselor that serves your time for the young adult whose ties with his/her life long area. You can also pick up free literature provided in the Sickle pediatric health-caregivers will gradually terminate. Cell Office.  Parents have in the past been concerned for the transition due to concerns of changes in health care providers, as well as in their role in the patient’s care. We aim to use a team approach in the transition clinic to PARKING minimize these issues. Health Care providers become concerned when there is a breakdown in the continuity 2N Clinic and Day Hospital at 2A: Paid parking is available at of care for young adults. Particularly if the patient has Parking Garage I located on Trent Drive near the Duke South been lost to the health care system or has not scheduled a Clinics. Valet parking is also available. Patients are responsible clinic visit for several years because, health-wise, s/he for all cost incurred for parking. Current prices are hourly up to has been doing well. Too often the young adult returns maximum of $8 for regular parking, $9 for valet parking. The for care because a major medical issue surfaces and prices are subject to change per Duke Parking Services Policy. during a time when medical documentation is scant. When breaks in continuity of care occur, a patient’s 5. Date(s) of last medical interventions: long-term health care and basic health maintenance may be compromised. Again, we hope that our transition  Ophthalmology Visit ______clinic will maintain this continuity needed.  Gynecology Visit ______To better address the issues of concern listed above, the process of transitioning is currently being reviewed. Efforts are being  Pneumovax Vaccine ______made to incorporate a plan of action to begin focusing on the transition process at an earlier age. Hopefully, by beginning this  Flu Vaccine______plan at an earlier age, the process will be enhanced for both the patient and family. Additionally, opportunities for the  Prevnar Vaccine______breakdown in continuity of care will be minimized. As mentioned above, we now have a Transition Clinic. This new  Hepatitis B series/immune______clinic is held by Dr. Nirmish Shah on Monday from 8:00 a.m. - 12 Noon. This clinic is directed to those patients 18 to 25 years  Last Blood Transfusion ___ old that recently transitioned from Pediatrics to Adult care.

Other Information: The Space Below is provided for you to record ______important information concerning your medical history and care: 1. Blood Type: ______

2. Average Values:  Hemoglobin ______For suggestions and comments about this handbook please feel  Hematocrit ______free to contact Dr. Regina Crawford.

3. Allergies: ______Revised January 2016

4. Current Medications (include dose and frequency)

IMPORTANT NUMBERS Emergency 911 Office 919-684-6464 Triage 919-681-3741 Sickle Cell Day Hospital 919-681-3753 Appointments 919-620-5300 Prescriptions 919-684-0684 Pediatrics 919-684-3401