Table of Contents. From the Director 1. Co-Directors 2. Transition Project 6. UAMS Multidisciplinary Clinic 8. Survey results 9.

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1 Adult Sickle Cell Program Annual Report

2 Table of Contents From the Director Co-Directors 2 Transition Project 6 UAMS Multidisciplinary Clinic 8 Curtis Lowery, M.D. Medical Director, ANGELS/ Center for Distance Health Issam Makhoul, M.D. Director, Hematology/ Oncology Division Survey results 9 Call Center 2 Education and Outreach 4 Disease Registry 20 Tina Benton, R.N. Director, ANGELS/Center for Distance Health Donna J. Richardson, R.N. Project Manager Adult Sickle Cell Clinical Program The UAMS Division of Hematology/Oncology has partnered with the Center for Distance Health to create a statewide system of support for patients with sickle cell disease, and for the physicians who care for them. As UAMS improves and standardizes the treatment of patients with sickle cell disease through the Adult Sickle Cell Clinical Program, patients throughout the state with SCD will experience an improved wellbeing. This annual report was produced by Creative Services and the Office of Communications & Marketing, University of Arkansas for Medical Sciences Creative Director: Laurie Shell, Graphic Design: Mindy Stout, Photography: Johnpaul Jones, Writing: Ben Boulden

3 From the Director Since January 204, UAMS has been working to improve the lives of adult Arkansans living with Sickle Cell disease. We have a clinic that meets every Wednesday in the Winthrop P. Rockefeller Cancer Institute. Patients are seen by pain specialists, hematologists and a social worker. We have a call center that our patients and their physicians have been using regularly to ask disease-related questions and schedule infusions and clinic visits. Patients are utilizing the Cancer Institute s infusion clinic to avoid ER visits and admissions to the hospital. When patients do have to visit our Emergency Department and/or get admitted to the hospital, our team follows them in the hospital with an evidence-based approach to their care. We continue to add patients to our Sickle Cell Disease Registry, and plan to use that information to paint a more detailed picture of the state of Sickle Cell in Arkansas. Also, we continue to work closely with the pediatric Sickle Cell Team at Arkansas Children s Hospital in transitioning young patients from pediatric to adult care. Our social worker works at both institutions and serves as a constant for patients who are growing into adulthood. I have been very proud and humbled to work for adult Arkansans with Sickle Cell disease, and so it pains me to say I will be leaving UAMS on June 30. On a brighter note, the UAMS Adult Sickle Cell Clinical Program is as strong as ever, and will have two co-directors to carry on our efforts to provide high-quality, comprehensive medical care to adult Arkansans with Sickle Cell disease. Dr. Pooja Motwani is a board-certified hematologist who will be making sure that the hematological aspects of the disease are being managed appropriately, and Dr. Megan Davis is a board-certified internist, who will work to address patients pain needs, and assist in the day-to-day management of the program. It has been an honor and a privilege getting to know each and every one of you, and I wish all of you peace and happiness. We ve come a long way, and I have every confidence that the UAMS Adult Sickle Cell Clinical Program will continue to grow and positively impact the care of all adults with Sickle Cell. Thank you for the opportunity to work with all of you! Sincerely, Robin Devan, M.D.

4 New Co-Directors Ready to Lead Program By Ben Boulden The Adult Sickle Cell Clinical Program s new co-directors, Megan Davis, M.D., and Pooja Motwani, M.D., bring to their jobs experience ranging from India to New York City and from research to emergency care. Before Davis graduated from the University of Oklahoma College of Medicine in Oklahoma City as a physician in 20, she worked for several years as a paramedic and emergency medical technician. She will lead the palliative care part of the clinic, focusing on relieving symptoms, pain and stress. Motwani, a native of India who grew up in seven different countries, graduated from Grant Medical College in India in She then completed a three-year residency in internal medicine at Mount Sinai School of Medicine s Bronx Program in New York City. Following this she worked for three years at UAMS Myeloma Institute. She left UAMS in 200 to pursue her passion in hematology and did a three year fellowship in hematology and medical oncology through Tufts University School of Medicine at Baystate Medical Center in Springfield, Massachusetts. Motwani is board certified in internal medicine, oncology and hematology. She will oversee the hematology fellows who will see patients in clinic each week. I chose to return to Arkansas and UAMS, Motwani said. I have lived and travelled around the world, but in Arkansas I feel I am home. Working with Dr. Devan, Dr. Davis, staff and patients in the sickle cell program has been so rewarding. It is a great team that truly puts patients at the center of their own care and empowers them with knowledge and support. It is an absolute privilege to be part of this team. We make a difference everyday in the lives of patients and I want to continue to do that. Davis said she feels the same strong sense of community from the program. She was a chief resident in internal medicine and pediatrics at UAMS, completing her residency in 204. From 20 to 203, she served on the UAMS Pediatric Continuity Clinic Committee. More recently she completed a fellowship in hospice and palliative care. With a professional background that includes caring for children and caring for adults, I want to keep using my experience to help our younger patients make the transition from pediatric sickle cell programs to the adult program here at UAMS, Davis said. Dr. Motwani and I have worked closely with Dr. Devan. We will miss her and her experience, but we will continue leading the program with her same diligence and compassion. Davis experience as an EMT and paramedic in Texas and Oklahoma included patient advocacy, public education and directing patient care and documentation. At UAMS, Davis has continued to be deeply involved in patient care. She served from on the Patient Care Adult Sickle Cell 205 Annual Report 2

5 Issues Committee, a monthly multidisciplinary and multispecialty meeting related to all patient care issues within UAMS, including policy and protocol review. Starting in September, she has been a Small Group Leader as part of the Arkansas Children s Hospital Good Morning Grief Support Group for Children. The support group meets weekly for eight sessions and is designed to provide an environment for children to discuss emotions related to grieving the loss of a loved one. Motwani has written book chapters and has been the principal author or coauthor of several published medical journal articles drawing on her collaboration in hematological and oncological research. She also performs blood and marrow transplants and treats patients with various types of hematological disorders. She is the supervisor of the bone marrow procurement clinic at UAMS and trains and supervises new doctors and nurse practitioners. Motwani loves to teach and is extensively involved giving lectures to medical students and serving as a career advisor. She is the principal investigator on several clinical trials at UAMS and leads the way in clinical research in hematological disorders. Our skill sets, Dr. Motwani s and my own, complement each other well, Davis said. Both of us are eager to use our skills to lead the Adult Sickle Cell Clinical Program forward and ensure it keeps improving the health and lives of people with sickle cell disease. Our skill sets complement each other well, both of us are eager to use our skills to lead the Adult Sickle Cell Clinical Program forward and ensure it keeps improving the health and lives of people with sickle cell disease. From left to right: Veronica Morton, A.P.R.N., Leigh Ann Wilson, L.C.S.W., Megan R. Davis, M.D., Stella Bowers, R.N., Pooja Motwani, M.D. Adult Sickle Cell 205 Annual Report 3

6 At 63, Sickle Cell Patient Lives Active Life By Ben Boulden Adult Sickle Cell 205 Annual Report 4 William Cooney knows how to survive, and he knows who can help him do that. After 63 years of sickle cell disease, a stroke, a heart attack and two severe cases of pneumonia, he has an active life. He credits UAMS and, more recently, the UAMS Adult Sickle Cell Clinical Program for helping him stay that way. All in all, I ve managed to have a fairly regular life, although I ve gone back and forth to the doctors, Cooney said. I was told I couldn t do a lot of things that I then did do. I felt like anything I wanted to do, I should be able to do it. And I did it. He was on bed rest for two years after the stroke and heart attack. Cooney said he finally asked the doctor how much longer he would have to stay in bed. I told him I had been inside so long that I was coming down with houseatosis, Cooney recalled. He said he had not heard that before, but that I could do anything I felt that I could. Cooney first was diagnosed with sickle cell disease when he was 3 years old. All of his physicians since have been UAMS physicians. He warmly recalls the special

7 care given to him at UAMS after his younger, 8-year-old brother died from sickle cell disease. The attention he received has been continuous through the years up to today in the Adult Sickle Cell Clinical Program. With Dr. [Robin] Devan, [M.D.], everything has been good, he said. Nurse Stella Bowers, [R.N.], and the support group and all the nurses there have been helpful. They talk with me and find out what s going on. Dr. Devan follows up on what they hear. The Excelling with Sickle Cell Disease support group, created by the Adult Sickle Cell Clinical Program, meets monthly at the UAMS Winthrop P. Rockefeller Cancer Institute. Participants now also have the option to join the group virtually from any device (PC, tablet or smart phone) from the comfort of their home. Cooney has attended its meetings regularly, and it s something he s never had before: the chance to share and discuss the disease with other sickle cell patients. I think one of the best things we can do with each other as sickle cell patients is sit down and discuss the different things that happen with us, he said. Some of us may share an experience and some of us may not. Hearing those stories and how people dealt with their experiences can give you new things to try. One of the lessons he tries to impart to others with sickle cell disease is the necessity of distracting oneself from the pain. It was a lesson he learned at UAMS when he was 5. Accompanied by his mother, Cooney had been at UAMS getting help with a sickle cell-induced pain crisis. The two were returning to the family car and discovered the keys were locked inside. As his mother went back inside to call Cooney s father for help, he took the oil level measuring stick from the engine and inserted it through a triangular vent window to pull the door lock open. He was seated in the car and had the engine running by the time she had returned. I said to her, Mama, I don t hurt any more. The pain is gone. That s when he learned that by focusing his mind on a task or something of interest to him, he sometimes can diminish the pain he experiences from the disease. Cooney also tries to teach people to listen to their bodies. Rather than just soldier on as he feels a pain attack coming on, he will lie down in a quiet place and be still. He also tries to time the taking of pain medication to just before his regular bed time so he s not drowsy from it during the day. If I can get to sleep during a pain episode, then I ll usually wake up better, Cooney said. I may be a little sore when I wake up, but it s nothing like before. Although as a patient he s not directly involved in educating health care professionals about sickle cell disease, Cooney has found himself in the role of educator sometimes when talking to physicians and nurses who have never encountered a sickle cell disease patient before. He enthusiastically supports the Adult Sickle Cell Clinical Program s mission to teach medical professionals about the disease, but knows he doesn t have to worry about the UAMS program staff and physicians. Sometimes people try to get me to go to other hospitals, but I tell them, I ve been going to UAMS my whole life, and I m not changing, Cooney said. I like the treatment I get at UAMS and the clinical program. Adult Sickle Cell 205 Annual Report 5

8 Transition Project Patients are treated at Arkansas Children s Hospital (ACH) until age 2 then are transitioned to an adult health care provider. UAMS works with ACH to make the transition a smooth and organized process. To ensure continuity of care, the UAMS social worker, the clinic nurse and the advanced practice registered nurse meet biannually with the pediatric sickle cell team at ACH to review patients who will transition within the next six months or prior to the next biannual meeting. The social worker meets with patients during ACH clinic appointments to help prepare them for transition. The social worker also assists patients with establishing an adult primary care provider in their community and with their initial appointment at UAMS Sickle Cell Clinic. The social worker and the pediatric team have developed an educational program to help patients prepare for transition, providing written and verbal education on various topics related to their disease and psychosocial aspects of health care. The program ensures every patient receives education on all aspects of their disease. 8 patients have transitioned their care from ACH to UAMS during this fiscal year patients are age 6 and over and interact with the social worker 80during ACH clinic appointments Worries Eased as Patient Ages into Adult Clinical Care By Ben Boulden Maturing into adulthood brings with it more than one transition, and the UAMS Adult Sickle Cell Clinical Program helped Taylor Jones make a big one. Jones, 22, a junior at Arkansas Tech University in Russellville who grew up in Crossett, has received sickle cell care at Arkansas Children s Hospital (ACH) for most of her life. Both her parents are Adult Sickle Cell 205 Annual Report 6

9 carriers for the genetic factor that causes it, so they made sure she was tested early. She was first diagnosed with the SS hemoglobin form of the disease when she was an infant, but her care shifted to the adult clinical program at UAMS when she reached 2. The UAMS program quieted some of her fears about the change. The transition has been good, Jones said. I was a little nervous at first because I had been at ACH my whole life. The doctor and nurses have have been really supportive. As young patients grow into adulthood, they are transferred to the adult program gradually and in an organized fashion. The program s physician, social worker, clinic nurse, and APRN meet with the pediatric sickle cell team at ACH biannually to identify patients who are nearing adulthood. The social worker meets with these patients to prepare them for the adult program and to facilitate scheduling and records transfers. The Adult Sickle Cell Clinical Program also offers a patient support group that meets monthly at the UAMS Winthrop P. Rockefeller Cancer Institute. Jones said though she is in Russellville, she plans on attending its meetings via a new, live virtual connection option she can make through an app on her smart phone. When Jones was a patient at ACH, her in-person visits were more frequent and the reminders from her physician and parents were more constant. They counseled her to avoid triggers like exposure to temperature extremes and dehydration. Jones is taking on more responsibility for her own care, and is successfully managing it. The adult program still provides meaningful support and reassurance that she relies on. They always reply when I call or text them with a question, Jones said. I always feel I can call and ask a question about anything related to sickle cell. At Children s, it was more a physical presence. Now, that I m older I only come to UAMS once or twice a year. They told me I am really good with my sickle cell. They seem to feel I am on track. She has about one severe pain crisis annually that necessitates a visit to an Emergency Department for pain medication. Jones said those crises cause her to feel pain throughout her body so completely that it feels like even her teeth and fingernails are hurting. Typically, Jones has several more limited pain crises in a year that typically involve a combination of headaches and limb pain. She usually can handle the smaller ones on her own. Part of managing her sickle cell disease also is about knowing her limits. Sometimes sickle cell slows her down, but it doesn t stop her. In late 205, she took a semester off, but early in 206, Jones returned to resume her studies. Jones also credits Disability Services at Arkansas Tech for helping and communicating with the physicians and staff in the UAMS program. Despite her youth, she is experienced when it comes to sickle cell disease, and she has some advice for anyone moving from a pediatric sickle cell doctor into adult care. Listen to what people tell you, Jones said. People can be very concerned, and most of the time, they are trying to help you. If I had to pick among several programs, I still would pick UAMS to move to from Children s. I like everyone there, and they re very helpful. Adult Sickle Cell 205 Annual Report 7

10 UAMS Multidisciplinary Clinic The UAMS Multidisciplinary Adult Sickle Cell Clinical Program began in January 204 and has grown to include more than 50 adult sickle cell patients in Arkansas. We continue to provide a comprehensive visit, including a care plan for the patient s medical care throughout the year that is communicated to each patient s primary care provider. The Multidisciplinary Clinic of the Adult Sickle Cell Clinical Program at UAMS includes: Two physicians bringing expertise from different specialities to ensure the comprehensive care of the adult sickle cell patients. A primary physician, Dr. Megan Davis, who specializes in Internal Medicine, pain management and care of the adult sickle cell patient. A physician of hematology, Dr. Pooja Motwani, who specializes in blood disorders and diseases, and treatment of sickle cell disease. A team of hematology physicians work with Dr. Motwani to see the patients during their clinic visits. A nurse practitioner (Veronica Morton, A.P.R.N.) to work in collaboration with the physicians (Drs. Megan Davis and Pooja Motwani) and the other team members in an active inpatient and outpatient setting to deliver health care services to patients with sickle cell disease. A social worker (Leigh Ann Wilson, L.C.S.W.) to assist patients and their families regarding health-related expenses not covered by insurance, transportation costs, employment options, and social and emotional support. She also facilitates the patient support group and is essential in the patient s transition from Arkansas Children s Hospital to adult care. Adult Sickle Cell 205 Annual Report 8 A registered nurse (Stella Bowers, RN) to assist with providing care to patients in an outpatient setting. She also serves as community coordinator connecting the clinic to other health care providers and as a liaison to the call center. We also refer patients for annual ophthalmological assessments and for mental wellness evaluations as needed. About 900 adult sickle cell patients are living in Arkansas so there is still work to do to reach each one. We are providing a better state of health for the sickle cell patients in Arkansas. Benton Crawford UAMS Adult Sickle Cell Clinical Program Clinic Patients-Counties of Residence Washington Sebastian Polk Sevier Little River Scott Howard Franklin 3 Miller Madison Logan Montgomery Pike Carroll Hempstead Johnson Yell Lafayette Boone Newton Garland Nevada 5 Clark Pope Columbia Perry Marion Searcy Hot Springs Ouachita Van Buren Conway Saline Dallas Union Baxter Grant Calhoun 4 Faulkner Pulaski Stone Cleveland Bradley Cleburne Fulton Izard Lonoke 73 6 Jefferson 6 Sharp Independence White Lincoln Drew 6 4 Ashley Prairie Arkansas Randolph Lawrence Jackson Woodruff Monroe 3 Desha Chicot Greene Craighead Poinsett Cross Lee Phillips Clay St. Francis Crittenden Mississippi

11 Comparison of fiscal years The fiscal year had a significant increase in patient/provider calls and NS infusions, a decrease in hospital/ ED consults, and fewer total clinic visits (although increase in # of clinic patients). With this comparison, the program leaders believe that patients are utilizing the call center and infusion center more while visiting the ED and clinic less because of the availability of the infusion and call centers services. It appears that we are changing the way patients with sickle cell disease are caring for themselves, and helping them to manage their disease more on an outpatient basis. 84 Patients scheduled in program since are deceased, 22 are no longer in the program and 9 have been scheduled but not yet seen. 34Current Active Clinic Patients NS Infusions Calls* Hospital/ED Consults Clinic Visits Cumulative Totals Fiscal Years and *Calls are total of Call Center, Clinic RN and Social Worker He doesn t have to be in the hospital as much as he used to be. Mother of a patient Adult Sickle Cell 205 Annual Report 9

12 Patient Satisfaction Survey In spring 206, the Sickle Cell Call Center conducted a patient satisfaction survey. Two surveys were done with two groups of randomly selected patients. The first group of patients had experienced a hospitalization related to sickle cell within the last year and were treated by the sickle cell team. The survey specifically was about the inpatient experience with the UAMS Adult Sickle Cell Team. To ensure the patients understood its purpose, each was read the statement below starting the survey and then asked if they had any questions. The statement was: I know that you have met many health care providers, but I want you to focus on the sickle cell team when answering the following questions. For questions that address how well you think the sickle cell team did, please respond with excellent, good, fair, or poor. Please let me know if the question doesn t apply to you. The team was very pleased with the results as they reflected positive experiences overall. As a result of the survey findings, some areas were identified that need improvement, and the team already is hard at work to make positive changes in them. Another group of patients who attended the multidisciplinary clinic were randomly selected and then surveyed. The team is very pleased with the number of positive responses. Although the team feels it is definitely on the right track, it will continue to make efforts toward improvement. The graphs below show the results from the surveys. Patients with Hospitalizations were asked How well do you think the sickle cell team did at Controlling Pain Excellent 30% Good 50% Poor 20%... Ensuring Comfort During Hospital Stay Poor 0% Excellent 70% Fair 0% Good 0% Adult Sickle Cell 205 Annual Report 0

13 Patients with Hospitalizations were asked How well do you think the sickle cell team did at Responding to Social Needs N/A 20% Poor 0%... Giving Information about Illness in an Understandable and Sensitive Way Good 30% Excellent 30% Fair 20% Good 20%... Demonstrating Helpfulness Good 30% Fair 20% Excellent 70%... Respecting Patient s Cultural Traditions Fair 0% Excellent 70%... Involving Patient in Decisions about Treatments and Tests Poor 0% Fair 0% N/A 20% Excellent 40% Good 30%... Demonstrating Respect Fair 20% Excellent 60% Good 20% Excellent 60% Good 20% Adult Sickle Cell 205 Annual Report

14 Patients with Hospitalizations were asked How well do you think the sickle cell team did at Demonstrating Availability Fair 0% Excellent 70% Good 20%... How likely would you be to recommend the Sickle Cell team to family or friends? Don t know 20% Clinic Patients were asked How well do you think the sickle cell team did at Controlling Pain Excellent 30% Fair 8% Good 42%... Ensuring Comfort During Clinic Visit Good 7% Excellent 83%... Giving Information about Illness in an Understandable and Sensitive Way Excellent 50%... Involving Patient in Decisions about Treatments and Tests N/A 7% Good 50% Very likely 80% Excellent 33% Good 50% Adult Sickle Cell 205 Annual Report 2

15 Clinic Patients were asked How well do you think the sickle cell team did at Responding to Social Needs Excellent 59% N/A 8% Good 33%... Demonstrating Helpfulness Good 25%... Demonstrating Availability Good 6% Excellent 84%... Respecting Patient s Cultural Traditions Good 7% N/A 25% Excellent 58% Excellent 75%... Demonstrating Respect Good 6% Excellent 84%... How likely would you be to recommend the Sickle Cell team to family or friends? Maybe 6% Very likely 84% Adult Sickle Cell 205 Annual Report 3

16 UAMS Student Away from Home Finds Support By Ben Boulden B efore day one even dawned for Whitney Jokodola, her parents were planning to teach her how to manage the sickle cell disease they knew she had. More than 20 years later, the UAMS Sickle Cell Adult Clinical Program provides her with some of that same education, support and assurance away from home. Both of Jokodolas s parents were immigrants from Nigeria to the United States. Her father was a carrier of the sickle cell disease, and her mother had it. The results of an amniocentesis test showed Jokodola would have it, too. Through Texas Children s Hospital in her hometown of Houston, and with the help of her mother s guidance, she learned how to manage her disease. Her sickle cell disease also whetted her appetite for knowledge, especially for pharmacy. I was a sickly child, Jokodola said. When I would take the pain medicine, I would be so surprised. I d say to myself, Adult Sickle Cell 205 Annual Report 4

17 Wow, the pain is gone. That was amazing to me. It piqued my interest. My mother also was an inspiration. If I showed interest in something like pharmacy, she would facilitate that. I decided firmly to be a pharmacist in th grade. That lesson about the power of medication led her to pursue training in the pharmacy doctoral program in the UAMS College of Pharmacy. By the time she had moved and settled in Little Rock for college, Jokodola had aged out of Texas Children s Hospital, and with her mother back in Houston, she no longer had her direct support. She had confidence she could manage her sickle cell on her own, and she did for a time. Then, she had a sickle cell diseaserelated pain crisis. Her pain usually starts as a deep throbbing pain that radiates through the entirety of one arm or leg. Pain medication diminishes the severity of that. To get some relief from the pain, she visited an urgent care clinic in Little Rock, and that led to a referral to the UAMS Adult Sickle Cell Clinical Program on campus. It was great to have someone to talk to about her condition who really has experience with it. Jokodola believes she does a good job of managing the pain and other immediate symptoms; she avoids triggers like high stress situations and dehydration. What she needs help with are things like remembering to get her eyes checked annually to avoid future problems. She also has come to rely on the program s Call Center. Before, I was managing my sickle cell on my own, but now I have a support system, said Jokodola. If something were to happen where I don t know what to do, I know I can just call Nurse Stella. I have that back up. Before, I had to self-diagnose and decide. Now, I can check to see if I am right. Jokodola also gets helpful information when she attends the program s Exceling with Sickle Cell support group of sickle cell patients, which meets monthly at the UAMS Winthrop P. Rockefeller Cancer Institute. The form of sickle cell disease she has, hemoglobin SS, is the most common type. People with it often experience the worst symptoms and at a higher rate of frequency than with other forms of the disease. Before, I was managing my sickle cell on my own, but now I have a support system. If something were to happen where I don t know what to do, I know I can just call Nurse Stella. Before, I had to self-diagnose and decide. Now, I can check to see if I am right She said she has been lucky so far because she has not experienced symptoms as severe or as often as it does with others, and it s become less as she has grown to adulthood. These are the cards I was dealt, Jokodola said. I think the best thing I can do is try to take it in a positive direction and see how I can help other people with it. I never thought of it as a negative disease that has limited me. It s not going to stop me from trying to do anything. Adult Sickle Cell 205 Annual Report 5

18 Call Center Sickle Cell 205 Annual Report 2 The UAMS Angels Call Center, established in 2004, services the Sickle Cell hotline 24/7. The Call Center provides assistance to health care providers requesting advice on patient management, patients needing assistance with appointments or questions on disease process or complications. Patients call in with immediate problems, which are triaged by the Call Center R.N. The triage nurse may advise the patient to go to the Emergency Department for immediate care, schedule a clinic appointment, outpatient infusion treatment or provide assistance with self-care management at home. Giving the patients direct access to a triage nurse familiar with the disease and having specific triage guidelines of standards of care, along with a dedicated Adult Sickle Cell Program Team providing secondary level triage, is reducing admissions and ED visits in the population of patients. One patient of the UAMS Adult Sickle Cell Clinical Program has utilized the UAMS Sickle Cell hotline four times in the last six months. This patient attends school and always says, I don t want to be admitted because I don t need to miss school. Each time, we have scheduled her for infusion at the UAMS Infusion Center, avoiding the Emergency room and potential hospital admission. She calls the Call Center and a nurse triages her to assure she can get the appropriate care. The nurse asks questions according to the best practices triage guidelines. When it calls for directing her for urgent/ emergent care, our protocol is for the triage nurse to step up to second-level triage with the Sickle Cell Team to see if other interventions would be an option. The patient doesn t want to be admitted and agrees that other options, if available, would be preferred. Then the call center contacts the Sickle Cell Team for 2 nd level triage. After speaking with the patient, it is determined it would be appropriate for the patient to go to the Infusion Center for fluids and pain medication. Sometimes the Infusion Center may not have space for a walk in patient, but most of the time we are able to get our patients in, said Stella Bowers, R.N., the clinic nurse for the program. The Triage Call Center has been great for the team and the patients. It has provided an option of care and advice for patients other the ED. Adult Sickle Cell 205 Annual Report 6

19 Telehealth Support 24/7 Call Center with Sickle Cell hotline Staffed by experienced RNs that can offer: Patients, families education concerning acute and chronic health problems related to sickle cell disease Telephone triage for patients with immediate health concerns - Emotional Support, assistance with medication refills - Home Care instructions to lessen symptoms, prevent crisis - Second level triage (calling Sickle Cell Team Member) before sending patient to ED giving alternatives to ED visit when appropriate Doc to Doc consults - supporting PCPs and ED physicians that are caring for SC patients across the state Caller Requests Reporting of treatment event Disease/health Information 276 Place on registry- 42 Triage Outcomes Information or Advice Only-4 Self care-6 Call back by MD/clinic nurse/rx-80 MD consult-5 Triage 258 Other-29 ED and/ or 9-77 See today/schedule appointment-62 Adult Sickle Cell 205 Annual Report 7

20 Education and Outreach Part of the mission of the Adult sickle Cell Clinical Program is to ensure adult Arkansans with sickle cell disease receive standardized, comprehensive health care services. To meet that objective, primary care physicians in Arkansas caring for adult patients with sickle cell disease are offered education and support through a variety of mechanisms: Collaboration and education regarding best care practices and provider support to keep the patients in their community for care whenever appropriate. Telephone consults available 24/7 where the physician can call the Sickle Cell hotline at -855-Sic-Cell and the nurse in the call center will connect them with a physician on the Sickle Cell team. The Call Center nurse will then facilitate any recommendations that a physician needs assistance, hospital transfer, appointment in the sickle cell clinic, or just assistance with a copy of the treatment guidelines. Evidence-based treatment guidelines on best practices to assist providers in their efforts to care for their patients in their local health care facilities. These treatment guidelines are made available by request and on our website Treatment guideline for the management of the perinatal patient with sickle cell disease, Sickle Cell Disease and Other Hemoglobinopathies, is available by request, on our website, and on the ANGELS guidelines website angelsguidelines.com. Educational presentations, including case presentations, difficult cases and lectures on demand are given to increase awareness regarding best case practices for medical management of these patients. The UAMS Center for Distance Health provides the opportunity for participation in Connecting Across Providers (CAP), a statewide means of provider teleconferencing. The CAP telconferences are given quarterly regarding various aspects of sickle cell disease and treatment. These presentations are available to providers across the state for live viewing and on-demand viewing. Providers can earn CEUs for education provided at these teleconferences. The team has provided educational lectures to several groups at UAMS, including medical residents in Emergency and Family Medicine. The team attends and presents at professional meetings and conferences. The team continues to reach out to health care providers around the state through professional conferences providing disease specific education and working to identify a core group of providers across the state to engage in collaborative primary care for this population. Outreach is also provided through exhibit booths at statewide conferences. Adult Sickle Cell 205 Annual Report 8

21 Secondly, and just as important, is the mission to provide education and support to patients, families and communities. Methods used to address these needs are: Patient Education Modules The team has been working with the Instructional Development Specialist at the Centers for Distance Health to develop interactive learning modules for our sickle cell patients. These modules will provide the patient with information about their disease and appropriate ways to manage their illness. The new website can be found at To encourage use of the education modules, patients will be given access to the modules via tablet during exam room wait times. The modules that have been completed are: Genetics of Sickle Cell Disease Nutrition to Fight Sickle Cell Disease Respect for Opiates Used to Treat Sickle Cell Disease Response to Painful Crises in Sickle Cell Medications used in Sickle Cell Disease Organs Affected by Sickle Cell Disease Coping with Sickle Cell Disease Outreach at Health Fairs and Community Events Program staff attend community outreach events during the year to various locations around the state to spread awareness about the program and about the disease. They visit health fairs, schools, clinics, churches and other venues. Support Group for Patients and Family The support group is an open group with a relaxed format. The group members are free to discuss any topics they wish and can share with the group about their life, family and health issues. The social worker and R.N. identify topics for each month to facilitate discussion and knowledge of sickle cell disease. The monthly patient/family support group meeting is held in the UAMS Patient Pavilion on the second Tuesday of each month from 2-3pm. The support group recently added an interactive video format on the third Thursday of each month from 7-8pm. The virtual meeting is hosted by the team social worker, Leigh Ann Wilson, and is supported as a pilot project through the UAMS Center for Distance Health. The first virtual support group was held on March 7, 206. Patients were given the option to participate in the support group from their home or other location of convenience using their PC, tablet or smartphone. Clinic patients who have provided an are sent a web link to the virtual support group. A flyer is also distributed in clinic to get on the ing list. Once the six-month pilot period is completed, the group will open to others besides UAMS patients. We will promote the support group through the program website and distributing fliers when attending outreach events. Adult Sickle Cell 205 Annual Report 9

22 Website Visitors New Visitor-23.80% Adult Sickle Cell website Pageviews 2,55 Sessions,088 Return Visitor-76.20% Users 837 Outreach Efforts Ave Session Duration(Minutes) 2 Professional Development/Networking Support Group Meeting Medical Conferences - Vendor Booth Ave Pages per Session Media Events 6 8 Clinic/ED visits introducing program 9 Health Fairs Meetings with Departments/ Organizations Professional Presentations Thank you, and keep doing it the way you are doing it now Anonymous quote from patient satisfaction survey Adult Sickle Cell 205 Annual Report 20

23 UAMS Adult Sickle Cell Team visits Johns Hopkins Adult Sickle Cell Stella Bowers RN, Veronica Morton APRN, Mandy David PA-C (John Hopkins), and Dr. Robin Devan On March 7, 206, the UAMS Adult Sickle Cell team visited Johns Hopkins Hospital in Baltimore, Maryland to see the large, successful Adult Sickle Cell program that cares for over 500 sickle cell patients and hear about the protocols they have developed and implemented as well as lessons learned along the way. Checking ourselves against their standards to see how we are doing in our program development and what changes can be implemented. During our visit to Johns Hopkins, the UAMS team had the opportunity to sit in on the weekly research meeting, tour the sickle cell infusion clinic, inpatient unit, and apheresis unit. Some of the attributes of Johns Hopkins large Adult Sickle Cell program: Infusion clinic is dedicated specifically for sickle cell patients Facilitating standardization of care Creating easier access and availability of appointments Adult Sickle Cell 205 Annual Report 2 Open seven days a week with the goal of preventing hospital admissions for pain crisis. Day Hospital that allows patients to receive treatment and return home each evening to be with family to provide a better quality of life. Psychiatry consults incorporated into clinic Individualized patient care plans easily accessible to all care providers, thus providing continuity of care 28 active research studies related to Sickle Cell Disease Large Sickle Cell team includes: Three physicians, one social worker, five physician assistants, one clinical associate, three registered nurses, dedicated psychiatric two clinical coordinators, consultant The UAMS team also got to meet with the Johns Hopkins emergency department Physician Assistant (PA) manager, Stephanie Figueroa, PAC. She developed the Sickle Cell Rapid Evaluation and Acute Management (S.C.R.E.A.M.) protocol for acute pain crisis patients. The protocol is a safe, standardized approach used in the Johns Hopkins Hospital s Emergency Department. One of the main goals of this protocol is to administer the first dose of pain medication within 90 minutes. Our team invited Stephanie Figueroa to speak on her SCREAM protocol at the 5 th Annual Sickle Cell Symposium at UAMS in October. With invitations going out to all Arkansas Emergency Departments we hope to improve the care of Adult Sickle Cell patients at the entry into the healthcare setting when suffering from an acute crisis. Continued on page 25

24 Disease Registry The Statewide disease registry, funded by the Arkansas Minority Health Commission and the Arkansas Legislature, was developed to gather information on adults living in Arkansas with sickle cell disease. All sickle cell patients 8 and over living in Arkansas are eligible to participate in the registry. Participation is opt in only meaning that patients are informed and then consented prior to participating in the data collection. If patients consent to participate in the registry, healthcare utilization and demographic information is gathered; including: ED visits, hospitalizations, clinic appointments, labs, medications, county of residence, and a quality of life scale. The registry also gathers a onetime tissue collection of both blood and urine, which is currently being stored with the UAMS Tissue Bank for future research. There is currently no national sickle cell disease registry but the CDC is working towards the development of this in the future. Our aim it to be able to provide this registry data for inclusion in the national registry when this is initiated. The registry will provide us with more specific data on patients with sickle cell disease, provide us with knowledge on the specific disease burden in Arkansas and provide data for research to improve the disease treatment and outcomes. Collection of data in the registry began in March 205 and at the end of April 206 there was 96 patients enrolled. Preliminary reports of the first year of data collection (from March 205 to March 206) has been completed with 87 participants and is represented in the following graphs. Gender Female 63% State of Birth Other 25% Reproductive Have Children 6% Male 37% Arkansas 75% No Children 39% Adult Sickle Cell 205 Annual Report 22

25 Type of Insurance Private 6% Highest Level of Education Medicare 24% Medicaid 60% College Graduate 0% Post Graduate 5% Some College 47% Less Than Highschool 4% Highschool Diploma 24% Employment Full Time 3% Disabled 47% Part Timel 9% Unemployed 5% Student 6% Diagnosis Beta Thalessmia 9% HB-O Arab % Unknown 2% They treat me well, got to know me as a person, not just a patient, and they keep me out of the hospital sc 22% SS 56% Adult Sickle Cell 205 Annual Report 23

26 Disease Registry Quality of Life Scale in Sickle Cell Lowest Score Highest Score Average Median Healthy Population* *Average score of Healthy Population without Sickle Cell Disease Participants of the Sickle Cell Registry are asked to rate their quality of life. Quality of life (QOL) is defined as an overall assessment of a person s wellbeing, which may include physical, emotional, and social dimensions as well as stress level, sexual function, and self-perceived health status. The QOL scoring range is 0 (worst possible QOL) to 2 (best possible QOL). In the first graph the ranges of score results are shown in comparison with the average score of the Healthy Population without Sickle Cell Disease. The second graph we show the average QOL scores of patients with other significant medical conditions to see how the average Sickle Cell QOL score compares. Quality of Life Scale in other diagnosis Psoriasis, Urinary Incontinence, and COPD Fibromyalgia Young Adults with Juvenile Rheumatoid Arthritis Osteoarthritis Systemic Lupus Erythematosus Rheumatoid Arthritis Adult Sickle Cell 205 Annual Report 24

27 Complications Osteomyelitis Leg Ulcers Splenomegaly, splenicsequestration, hypersplenism Gallstones/Cholelithiasis, Cholecystitis Iron Overload Stroke/transient ischemic attack, seizures Chronic Renal Failure Priapism Pulmonary Hpertension Acute Chest Syndrome John Hopkins Adult Sickle Cell Continued from page 2 The team of providers at Johns Hopkins is leading the way in providing exceptional care to adults with sickle cell disease. The UAMS team was able to validate the program and current practice after comparing practice standards at Johns Hopkins. We continue to communicate with the team at Johns Hopkins with plans of replicating components of their program. Some of the things we are working on currently: Dedicated appointment slots in our facilities Infusion Clinic, improving the access of Psychiatric consults, and improving accessibility of patient care plans. The UAMS Adult Sickle Cell team is continuing to strive to provide a better state of health for the adult sickle cell patients of Arkansas. Adult Sickle Cell 205 Annual Report 25

28 To utilize the service of this program call the 24/7 Call -855-Sic-Cell ( ) For more information visit Adult Sickle Cell 205 Annual Report 26