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Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice

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Friday, October 12
 

3:15pm EDT

Discovering And Breaking Down Barriers: Improving Compliance with Appointments in the Pediatric Sickle Cell Clinic
Abstract

Authors:
Mrs. carla Jones, Atrium Health: Levine Children's Hospital,Mr. Kenneth Mitten, Levine Children's Hospital Charlotte, NC    

Objective: Information from our pediatric sickle cell disease (SCD) clinic indicates that we have an average noncompliance rate for attendance of clinic appointments of 30%. Our objective was to determine barriers to clinic attendance and strategies to overcome these barriers to improve compliance for 1 month clinic appointments for pediatric patients (birth-21 years of age) with sickle cell disease (SCD) on hydroxyurea.
 
Method: Caregivers of Sickle Cell patients indicated via a survey 5 main barriers that prevented them from consistently attending their 1 month clinic follow ups. They were  transportation, inflexibility of employers, personal family issues, inconsistent contact information (frequent phone number and address changes) and even forgetfulness (no barriers) as primary reasons for missed clinic appointments. Pareto chart analysis revealed patients scheduled for 1 month appointments were most likely to miss appointments. A multidisciplinary team was formed and created an aim statement, current and ideal process flow maps, and tested multiple change ideas with small tests of change.  Changes tested include offering offsite lab visits, posting signage to assist with transportation, mailing letters after missed appointments, assisting with reminders in phones, reminder calls to patients with a history of missed appointments, and giving out patient expectation forms to new patients and at yearly appointments.  


Speakers
KM

Kenneth Mitten, MSW

Pediatric Sickle Cell Social Worker, Levine Childrens Hospitals
I am a Pediatric Sickle Cell Social Worker in the Pediatric Hematology, Oncology, and Transplant Program at Levine Children’s Hospital in Charlotte, NC. I specialize in treating the psychosocial needs of children, adolescents and young adults and families living with Sickle Cell... Read More →
avatar for Carla Jones, MSN, RN

Carla Jones, MSN, RN

Pediatric Sickle Cell Nurse Navigator, Levine Children's Hematology Oncology Bone Marrow Transplant Clinic
I am currently serving as the Pediatric Sickle Cell Nurse Navigator at Levine Children's Hematology Oncology Bone Marrow Transplant Clinic in Charlotte, NC. I have been serving in this capacity for 3.5 years. I specialize in providing education as well as navigating the newly diagnosed... Read More →


Friday October 12, 2018 3:15pm - 3:30pm EDT
Constellation D

3:30pm EDT

The Opioid Epidemic And CDC Guidelines: A Case Of An Unfortunate Consequences Paved By Good Intentions
Abstracts

Authors: 
Dr. Cynthia Sinha- Emory University School of Medicine, Dr. Nitya Bakshi- Emory University School of Medicine, Ms. Diana Ross- Emory University School of Medicine, Dr. Lakshmanan Krishnamurti- Emory University School of Medicine

Objective 
Chronic pain is a debilitating complication in adults with sickle cell disease (SCD), and is associated with substantial morbidity, healthcare utilization, and risk of premature mortality. While chronic pain is most commonly treated with opioid analgesics, it is not clear whether opioids are safe or effective in the treatment of this condition. In the past two decades, the incidence of opioid abuse has soared in the general population, and opioid abuse was associated with over 64,000 deaths in the US in 2016. Recognizing the public health importance of the “opioid epidemic,” the CDC has published recommendations for prescribing opioids for chronic pain. The guidelines do not cover the use of opioids in patients with cancer and end-of-life care. The guidelines provide 12 detailed recommendations for initiating and continuing opioids for chronic pain, determining how to develop an opioid therapy plan, and assessing risk and harm of opioid use. The guidelines also propose restrictions on the dosage and frequency of “as needed” prescriptions. While the guidelines do not specifically address SCD chronic pain, there is a concern that implementation may exceed the scope of the guidelines, that there may be unintended medical consequences for the SCD patient with chronic pain, and that patients may feel stigmatized or discriminated against. To date, no research has investigated the perspective of adult patients on the impact of the heightened focus on opioid abuse as a result of the CDC guidelines. We, therefore, sought to interrogate the standpoint of adult patients on the effect of the implementation of the CDC guidelines by healthcare professionals at various levels.
Methods
We conducted semi-structured qualitative interviews of adults living with SCD to learn about their experiences with chronic pain, pain management, and physician interactions. We specifically asked participants thoughts on how the concern about the opioid epidemic among public health and medical communities has impacted their individual experiences and the SCD community as a whole. We used a semi-structured interview guide to collect data. Participants were recruited from SCD conferences and symposiums. From this first wave of recruitment, we utilized snowball sampling. Participants shared our study with friends, support groups, and posted the survey on social media sites that support SCD. We also published details of the study at two sickle cell clinics. Individuals 18 years old or older and diagnosed with SCD were eligible. We conducted interviews over the phone, but a few took place face-to-face. Audio recordings were transcribed verbatim. Data were analyzed using Grounded Theory Methodology.
Results
Twenty adults living with SCD were interviewed, of whom 17 were female. All but one participant reported experiencing pain on 3 or more days a week. The participants reported a mean daily pain intensity range of 4.8 on a scale of 10. Results were grouped into three emerging themes. The first theme, was the consistency of implementation of the CDC guidelines. The experience of the subjects suggest that implementation of the guidelines is variable. Patients had their doses decreased variably and had decreased access to opioids but were not offered alternative approaches to pain management. The second theme was the adverse impact of the guideline implementation on the health of patients. Restrictive access to pain medications leads to patients rationing their opioid usage and seeking alternatives such as the use of cannabis. Participants also felt that the exclusive focus on pain by their physicians also seemed to adversely impact their attention to the other aspects of their care. The third theme was the unintended stigmatization related to the implementation of the guidelines. Many patients felt stigmatized even though they did not feel like they were abusing opioids and that their opioid use for pain was unrelated to the opioid epidemic. Many patients were required for the first time to complete opioid contracts.
Conclusion
These data indicate that in the perspective of adult patients the CDC guidelines are implemented inconsistently, have adversely impacted care and resulted in the unjustified stigmatization of patients with SCD with chronic pain

Speakers
avatar for Cynthia Sinha, PhD

Cynthia Sinha, PhD

Associate Scientist, Emory University School of Medicine
Cynthia B. Sinha, PhD is a sociologist with a focus on families, culture, race-ethnicity, and more recently, medical sociology. She has over 10 years of experience in qualitative research methodology. Areas of research interest for Sickle Cell Disease include the experiences of older... Read More →


Friday October 12, 2018 3:30pm - 3:45pm EDT
Constellation D

3:45pm EDT

Availability of Information on Blood and Marrow Transplantation (BMT) Coverage Benefits for Patients with Sickle Cell Disease (SCD) Enrolled in Medicaid
Abstract

Authors: 

Dr. Tatenda Mupfudze- National Marrow Donor Program, Ms. Lensa Idossa, MPH -National Marrow Donor Program, Dr. Lih-Wen Mau - PhD, MPH, National Marrow Donor Program, Ms. Aisha Mehmud, MPH - National Marrow Donor Program, Ms. Jaime Preussler, MS -National Marrow Donor Program, Ms. Rachel Glissmann, MPH- National Marrow Donor Program, Ms. Alicia Silver, MPP –National Marrow Donor Program, Ms. Susan Leppke, MPH -National Marrow Donor Program, Dr. Linda Burns, MD - National Marrow Donor Program, Ms. Ellen Denzen, MS -National Marrow Donor Program

Background:
Sickle cell disease (SCD) is the most common inherited hemoglobin disorder affecting approximately 100,000 people in the United States (U.S.) [1]. The Centers for Disease Control and Prevention (CDC) report SCD incidence rates of 1:365 and 1:16,300 for Black/African Americans and Hispanics in the United States (U.S.), respectively [2]. Nearly 2,000 new diagnoses are reported each year via newborn screening [2]. Painful crises are the hallmark of SCD, coupled with an unpredictable clinical course that can lead to organ dysfunction, poor quality of life and premature death [3-4].    
Allogeneic blood and marrow transplantation (BMT) is a complex and resource-intense therapy that uses donor cells from either a closely matched family member, unrelated donor, or cord blood to restore the patient’s bone marrow, giving rise to healthy red blood cells [3-4]. It is the only potentially curative treatment option for SCD with a 5-year disease-free survival rate of 92% in children [3-4].  
The timing of when a patient with SCD should undergo BMT is evolving based on data from clinical trials. Currently, experts recommend that children with severe SCD, including overt strokes, recurrent acute chest syndrome (ACS), or recurrent vaso-occlusive crisis despite adherence to hydroxyurea therapy and/or regular blood transfusion therapy, be referred for BMT consultation [3-4]. Some experts recommend earlier referral due to the progressive nature of the disease.  
Lack of appropriate insurance coverage can be a significant barrier to accessing advanced therapies such as BMT. Many patients with SCD are covered by Medicaid, a federal program administered at the state level [5]. BMT is an optional benefit under Medicaid, which leads to significant variation in Medicaid policy over time and between states, further exacerbating disparities in access [5]. There is a dearth of information on the impact of: 1) Medicaid coverage and 2) easy-to-access policy information for patients with SCD.   
Objective:
To describe the availability of information on Medicaid coverage benefits for BMT for patients with SCD  
 Methods:
 SCD incidence estimates were calculated using the number of births in 2016 [6-7] multiplied by the CDC SCD incidence rates by race [2].  States estimated to have more than 75 newborns diagnosed with SCD were identified and information on Medicaid BMT coverage benefits was collected. Where available, information was obtained from Medicaid plan websites for the calendar year 2018. When information was not available online, state Medicaid offices were contacted. Lastly, if contact with the state office could not be made, transplant centers within that state were contacted for information. Data on the number of BMTs performed annually for patients with SCD was extracted from the Center for International Blood and Marrow Transplant (CIBMTR) outcomes registry for 2016 and 2017 (there is 1-year lag in data submission to the CIBMTR by transplant centers, hence 2016-2017 data was included in this analysis).  
   
   
Results:
Six states were estimated to have more than 75 newborns diagnosed with SCD in 2016 (Table 1). Although Medicaid programs determine BMT coverage for SCD by reviewing individual patient characteristics and clinical indications, general requirements differed by state. Information on BMT coverage for patients with SCD was publicly available only on the Texas, North Carolina and Californian plan websites [8-11]. The absence of information on plan websites necessitated contacting state Medicaid offices. Contact with Medicaid office representatives revealed that BMT may be covered with prior approval in California. A Georgia Medicaid representative reported that although BMT may be covered for patients with SCD under 21, after obtaining prior approval, BMT was not covered for patients with SCD over 21 years. Data collection for New York and Florida is currently ongoing. Data collection through state Medicaid offices and transplant centers on comprehensive benefits including BMT-related travel, housing, and medications is also currently ongoing and will be completed by September 2018 [8].    
   
Conclusion:
There is disparate information available online regarding Medicaid coverage of BMT for patients with SCD across states with high numbers of SCD patients. Limited publicly available information on BMT coverage for patients with SCD may contribute to disparities in access. Coverage for resources beyond the procedure itself needed to undergo BMT, such as travel, housing, and medications, may also affect patient access to BMT (data collection is ongoing). Although Medicaid programs may grant prior approval for BMT on a case-by-case basis, making general requirements/guidelines on patient and clinical indications that would be considered for BMT and covered by Medicaid publicly available would better support patient-provider informed treatment decision-making. Provision of easy-to-access information on current Medicaid coverage for BMT in SCD is needed to address informational barriers and help reduce disparities in access. Expanded awareness of available Medicaid coverage benefits may also increase engagement among health professionals and the SCD community around a potentially lifesaving therapy.   
References:
  1. National Heart Lung and Blood Institute. Evidence-Based Management of Sickle Cell Disease Expert Panel Report 2014.  
  2. Centers for Disease Control and Prevention (CDC). Data & Statistics. https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed Feb, 2018.  
  3.  Kassim AA, Sharma D. Hematopoietic stem cell transplantation for sickle cell disease: The changing landscape. Hematol Oncol Stem Cell Ther. 2017.  
  4. Walters MC, De Castro LM, Sullivan KM, et al. Indications and Results of HLA-Identical Sibling Hematopoietic Cell Transplantation for Sickle Cell Disease. Biol Blood Marrow Transplant. 2016;22:207-211  
  5. Medicaid.gov. Medicaid & CHIP Enrollment Data Highlights. https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report-highlights/index.html, Accessed Apr, 2018.  
  6. Kaiser Family Foundation. Number of Biths by Race, https://www.kff.org/other/state-indicator/births-by-raceethnicity/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Black%22,%22sort%22:%22desc%22%7D. Accessed Apr, 2018  
  7. The Centers for Disease Control and Prevention (CDC), National Vital Statistics Reports (NVSR), Vol. 67, No. 1: Births: Final Data for 2016. Accessed Jan 2018.  
  8. Be the Match. Transplant Benefits & Coverage. https://payer.bethematchclinical.org/transplant-benefits-and-coverage/. Accessed Apr, 2018.  
  9. Florida Medicaid. Transplant Services Coverage Policy Agency for Health Care Administration. http://www.fdhc.state.fl.us/medicaid/review/Specific/59G-4.360_Transplant_Coverage_Policy.pdf. Accessed Feb 2018  
  10. Texas Medicaid Provider Procedure Manual December 2015 Volume 1 & 2.  http://www.tmhp.com/TMHP_File_Library/Provider_Manuals/TMPPM/2015/Dec_2015%20TMPPM.pdf. Accessed Jun 2018  
  11. NC Division of Medical Assistance. Medicaid and Health Choice Allogeneic Hematopoietic & Bone Clinical Co

Speakers
TM

Tatenda Mupfudze, PhD

Health Services Research Analyst II, Center for International Blood and Marrow Transplant Research (CIBMTR)
Tatenda Mupfudze is a Health Services Research Analyst at the National Marrow Donor Program. Her area of research interests center on anemia of inflammation, hepcidin, sickle cell anemia and blood and marrow transplantation.


Friday October 12, 2018 3:45pm - 4:00pm EDT
Constellation D

4:00pm EDT

A Training Approach for Newborn Screening Personnel in Nigeria
Abstract

Authors:
Dr. Baba Inusa- Guys and St. Thomas Hospital, Dr. Lewis Hsu- University of Illinois at Chicago,
Dr. Wale Atoyebi- Oxford University, Dr. Dogara Livingstone-Barau Dikko Teaching Hospital / Kaduna State University, Mrs. Bola Ibilola- SCORE Charity, Dr. Andrea Lamont- University of South Carolina, Dr. Juliana Olufunke Lawson- SCORE Charity, Mrs. Olukemi Ajamufua- Guys and St. Thomas Hospital, Dr. Kofi Anie- Imperial College, London

BACKGROUND: Nigeria leads the world in births with sickle cell disease (SCD), and
effective management should incorporate newborn screening. Learning from past
mistakes, we are applying the implementation science approach "Getting To Outcomes (GTO)" to incorporate stakeholder goals, capacity, and motivation to plan for pilot programs for SCD newborn screening in Nigeria's Kaduna and Niger States. Needs assessment and Training are needed for personnel in the whole process: key policymakers, laboratory technicians, health care workers (primary care and specialist care), and community workers like Community Health Extension Workers (CHEWs), and Traditional Birth Attendants (TBAs). Community awareness can be built up by SCD community groups and volunteer community mobilizers (VCM). Education theory highlights that the role-playing format is a good match for adult learners. Scenarios also permit rehearsal and planning for actual problems before the trainees encounter them.
GOAL: Develop the training content and format for SCD newborn screening across
these stakeholder groups.
METHODS: Needs assessment was conducted with stakeholder focus groups for 2
days in Kaduna in November 2017, followed by a 4 day training workshop in Kaduna in February 2018 to plan for newborn screening. Participants were invited: key policymakers, doctors, nurses, midwives, primary healthcare workers, CHEWs, TBAs, VCM, and SCD non-governmental organizations (NGOs). This was facilitated by a faculty of international and local experts, including one by e-conference. An interactive training approach was developed that included case discussions and role-playing, plus visual aids and a video drama.
RESULTS:
Role-playing was extremely well-received by the CHEW, TBA, VCM, nurse/midwives, and even legislators. Team-building occurred, as people started to refer to each other smilingly by the catch-phrases they had used during role-playing. Additional information emerged during the role-playing as experienced clinicians added rich details: the TBA are pivotal for follow-up; traditional healers prefer not to combine treatments with Western medicine; "difficult-to-reach" areas are served by an infrastructure of TBA, VCM, Emergency Transport (ETS), junior CHEW. Policy-makers using role-playing to apply the GTO approach expressed understanding about the value of stakeholder engagement to mold a plan to their local context. Legislators and medical personnel asked for additional case scenarios with local newborn screening issues, so that they could use the GTO framework more effectively.
CONCLUSION:
Role-playing can be a key approach for future training for SCD newborn screening and care in Nigeria. Role-playing can particularly be powerful for remembering key concepts, facilitating adaptation to local needs, and seeing the needs of other stakeholders. A recording of the case scenarios could be used to disseminate the learning and further raise awareness of SCD in Nigeria. This training approach also aligned well with the implementation science framework "Getting To Outcomes" for involving stakeholders in the newborn screening project.

Speakers
avatar for Lewis L. Hsu, MD, Ph.D

Lewis L. Hsu, MD, Ph.D

Professor Pediatric Hem-Onc, University of Illinois Hospital
Lewis Hsu is a pediatric hematologist dedicated to finding more cures for sickle cell disease, and improving treatment and education until cures can be found. He has experience with clinical and translational research in sickle cell disease, including clinical research on pain assessment... Read More →


Friday October 12, 2018 4:00pm - 4:15pm EDT
Constellation D

4:15pm EDT

The Importance of Social Work In Complex SCD Care: A Model For Clinical Intervention
Abstract

Author: 
Prof. Teresa Works- New England Sickle Cell Institute, UCONN Health

Teresa Works, LCSW, ACSW, Ph.D. Candidate, New England Sickle Cell Institute, UCONN Health:
Objective: To understand the importance of the role of social worker as part of a multidisciplinary SCD team to improve SCD care while reducing inpatient length of stay, 30 day re-admissions and improving financial solvency of institutions providing SCD care as well as the financial burden of chronic disease on patients.
Methods: Sickle cell disease (SCD) is a common genetic blood disorder in the United States. It is estimated to affect approximately 100,000 African Americans and other people of color in the U.S. SCD causes the oxygen carrying hemoglobin to have an irregular “sickled” shape, which occludes small blood vessels and organs and reduces oxygen supply to cells, organs and bones. These acute vaso-occlusive episodes result in chronic anemia, organ dysfunction and causes unpredictable acute painful crisis which are the primary causes of hospitalizations in persons with SCD. Many SCD patients develop chronic pain and complex co-morbidities requiring specialized and expensive medical care. “The estimated cost of medical care for the individuals with sickle cell disease in the US exceeds $1.1 billion at about $16,000 annually or $1,341 per patient per month. This figure does not include the impact on reduced quality of life, lost productivity, un-compensated care and premature mortality. If these were included the full economic costs of SCD are likely to be much higher”. [1]
A retrospective analysis of the implementation and outcomes of the New England sickle Cell Institute was performed as it relates to several national benchmarks of care was performed for the period of 2012-2017. In 2012, UCONN Health developed the New England Sickle Cell Institute (NESCI): a comprehensive, multidisciplinary team to navigate patient care across both inpatient and outpatient settings. Integral to this team, was the designated, full time licensed clinical social worker (LCSW). The role of the social worker at the NESCI is unique, in that it covers SCD patients in both inpatient and outpatient settings providing a variety of clinical services focused on the unique needs of each SCD patient. The role includes daily rounding with the inpatient multidisciplinary team on the SCD inpatients and facilitating discharge planning, NESCI follow up, and coordination of aftercare. The social worker works within the NESCI clinic having scheduled (and unscheduled) outpatient appointments with SCD patients to provide psychosocial and behavioral health services. In addition, the social worker assists SCD patients with transportation, medical protection for utilities, insurance and entitlements, grant funding for patient unpaid medical bills, referral for employment services, housing and a myriad of other needs. These psychosocial, discharge planning and concrete service needs, if unmet, can cause non-adherence with treatment, longer inpatient lengths of stay, difficulty accessing needed medical care, as well as protracted illness, pain and suffering.
Results:  Over a 5 year period, the use of reporting such as (30) day readmission reports, inpatient length of stay (LOS), Emergency department utilization, and financial reporting assisted in clinical and programmatic developments to improve NESCI SCD care and demonstrate improved patient care and programmatic financial solvency. Clinical and programmatic goals were established and implemented over this period corresponding with the development of the multidisciplinary NESCI team including the LCSW. The social workers unique role proved invaluable in terms of reducing inpatient bed days, average length of stay and (30) days re-admissions. UCONN NESCI demonstrated that by expanding multidisciplinary SCD services, they were able to improve quality clinical care and generate revenue, while decreasing inpatient LOS and (30) day readmissions. These changes saved the institution significant financial savings, more than covering the cost of the clinical social worker’s salary and fringe, while improving patient access to social work clinical and behavioral health services, which decreased the financial burden of chronic SCD care to the patients as well.
Conclusion: SCD is a complex and expensive disease to treat and manage. Social workers, with their unique training in a “person in environment” approach, have a distinct and beneficial role with all chronic diseases, including SCD. Utilization of a dedicated SCD social worker can improve health care outcomes, reduce institutional costs and financial burdens to patients. Through these multidisciplinary interventions, SCD patients can receive improved quality clinical care, while simultaneously reducing the institutional costs of providing SCD care as demonstrated in the 5 year retrospective analysis at the NESCI at UCONN Health. These changes can be implemented systematically at adult SCD comprehensive centers across the country to expand access to SCD care and reduce financial burdens to institutions and patients.

Speakers
avatar for Teresa Works, MSW, LCSW

Teresa Works, MSW, LCSW

Clinical Social Worker, Property Management, Psychotherapist, UCONN Health
Teresa Works, LCSW, ACSW is a social worker with 25 years experience in medical and behavioral health settings. She is a doctoral candidate in social work research at the UCONN School of Social Work, where she also is an adjunct faculty member.  Teresa has been employed full time... Read More →


Friday October 12, 2018 4:15pm - 4:30pm EDT
Constellation D

4:30pm EDT

The Forgotten Vital Sign: Use of A Distress Thermometer with Children, Adolescents and Young Adults Diagnosed with Sickle Cell Disease
Abstract

Authors : Mrs. carla Jones- Atrium Health: Levine Children's Hospital, Mr. Kenneth Mitten- Levine Children's Hospital Charlotte, NC

Objective: Information from our pediatric sickle cell disease (SCD) clinic indicates that we have an average noncompliance rate for attendance of clinic appointments of 30%. Our objective was to determine barriers to clinic attendance and strategies to overcome these barriers to improve compliance for 1 month clinic appointments for pediatric patients (birth-21 years of age) with sickle cell disease (SCD) on hydroxyurea.
Method: Caregivers of Sickle Cell patients indicated via a survey 5 main barriers that prevented them from consistently attending their 1 month clinic follow ups. They were transportation, inflexibility of employers, personal family issues, inconsistent contact information (frequent phone number and address changes) and even forgetfulness (no barriers) as primary reasons for missed clinic appointments. Pareto chart analysis revealed patients scheduled for 1 month appointments were most likely to miss appointments. A multidisciplinary team was formed and created an aim statement, current and ideal process flow maps, and tested multiple change ideas with small tests of change. Changes tested include offering offsite lab visits, posting signage to assist with transportation, mailing letters after missed appointments, assisting with reminders in phones, reminder calls to patients with a history of missed appointments, and giving out patient expectation forms to new patients and at yearly appointments.
Results: Weekly show percentage of patients with SC disease on hydroxyurea attending their 4wk follow up appointment was evaluated using a p Shewhart chart. Upper control limit is 100%. Lower control limit is 40%. Mean percentage of target population attending scheduled appointments is 85%.
Implementing personal reminder phone calls to patients/families with a history of missing appointments was a successful strategy to improve show rate. along with Offering offsite lab visits and mailings of letters sharing the number of no show appointments with parents of children with only minimally did not significantly improved compliance rate for appointments. The letters did increase the number of families calling ahead to reschedule appointments.
Conclusions: Attending regular clinic appointments is an important component in positively impacting continuity of care and to maintain health for patients with SCD
By developing a well-defined process, effectively communicating expectations, and using data to guide next steps, this project demonstrates an effective approach to increasing clinic attendance in a vulnerable population.

Speakers
KM

Kenneth Mitten, MSW

Pediatric Sickle Cell Social Worker, Levine Childrens Hospitals
I am a Pediatric Sickle Cell Social Worker in the Pediatric Hematology, Oncology, and Transplant Program at Levine Children’s Hospital in Charlotte, NC. I specialize in treating the psychosocial needs of children, adolescents and young adults and families living with Sickle Cell... Read More →


Friday October 12, 2018 4:30pm - 4:45pm EDT
Constellation D
 
Saturday, October 13
 

8:30am EDT

Rate Of Vaso-Occlusive Crisis Episodes Among Sickle Cell Disease Patients In The US Medicaid Population
Abstract

Authors:
Dr. Menaka Bhor- Novartis, Dr. Lin Xie- SIMR, Inc, Dr. Jincy Paulose- Novartis, Dr. Huseyin Yuce- New York City College of Technology, Dr. Nirmish Shah- Duke University

OBJECTIVE: Vaso-occlusive crisis (VOC) is the hallmark of patients with sickle-cell disease (SCD), and cause patients severe pain, life-threatening complications, hospitalization, decreased quality of life, and early death. This study evaluated the rate of VOC episodes by place of service among adult patients with SCD in the US Medicaid population.
Methods: A retrospective study was conducted using the Medicaid Analytic Extracts Database from 01JAN2009-31DEC2013. Adult patients with SCD were identified using ICD-9-CM diagnosis codes (282.41-282.42, 282.60-282.69). The first observed SCD diagnosis date during the identification period (01JUL2009-31DEC2012) was designated as the index date. Patients were required to have continuous Medicaid health plan enrollment for ≥6 months pre-index date (baseline period) and ≥12 months post-index date (follow-up period). VOC episodes were examined for various follow-up periods, until the earliest occurrence of health plan disenrollment, death, or end of the study period (31DEC2013). Patient demographics and baseline clinical characteristics were examined. VOC claims within a 3-day gap were combined and considered as one VOC episode. The rate of VOC episodes per person-year during the follow-up period was calculated as total number of VOC episodes divided by the total follow-up length to adjust for different patient follow-up periods. VOC episodes in the first month of follow-up was also examined and stratified by setting care, including hospitalization, emergency room (ER), outpatient, office, and other. All variables were analyzed descriptively.
 RESULTS: The study included 8,521 patients; mean (standard deviation [SD]) age was 33 (12) years; 74.0% were identified as black, and 67.3% were female. The most common comorbidities during the baseline period were infectious and parasitic disease (19.7%), asthma (10.9%), and fever (9.3%). Mean (SD) length of follow-up period was 2.7 (1.0) years. The rate of VOC episodes was 3.31 per person-year for the overall adult SCD patient population during the entire follow-up period. During the first month of follow-up, 35.2% of patients had ≥1 VOC episode. Mean (SD) number of pain crisis episodes in the first month was 0.5 (0.8) among the adult SCD patients. Of those, 38% were treated during the hospitalization, 31% in the ER, 20% in the outpatient setting, 8% in a physician office, and 3% were treated in other settings (Figure 1). ConclusionS: Adult SCD patients are burdened with a high rate of VOC episodes, with 35% of the patients having at least one VOC episode in 1 month. In addition, SCD patients utilized a substantial amount of health care resources, with the majority of VOC care (70%) occurring within the hospital and ER

Speakers
avatar for Menaka Bhor, PhD

Menaka Bhor, PhD

Associate Director, Novartis
Currently serving as an Associate Director, HEOR at Novartis Oncology and responsible forSickle Cell Disease portfolio. Previously as a Director at Cardinal Health generated compellingproposals for new sales opportunities and served as scientific lead on retrospective and prospectivestudies... Read More →


Saturday October 13, 2018 8:30am - 8:45am EDT
Baltimore/Annapolis

8:30am EDT

Improving Provider Readiness For Young Adult Transitions: The (8) Behavioral Changes Providers Can Make To Improve Transition Outcomes
Abstract 

Authors:
Prof. Teresa Works- New England Sickle Cell Institute, UCONN Health

Objective: Sickle cell disease (SCD) is a genetic blood disorder estimated to impact about 1 in 400 individuals of African American decent in the United States. SCD can typically cause both acute and chronic pain crisis. Secondary co-morbidities of SCD include risk(s) of infection, strokes, splenic infarct, pulmonary embolus, acute chest syndrome and other acute medical conditions, which can dramatically increase risk of death. Historically, children with SCD did not live until adulthood. However, beginning in 1990’s, the utilization of antibiotics with children, dramatically decreased mortality in children with SCD. As a result, most now live until adulthood. Due to more adults living with SCD there is an increasing need for comprehensive teams of adult sickle cell providers to provide care to these young adults, who are aging out of pediatric care. Ideally, adult and children’s comprehensive SCD programs collaborate around effective and efficient transition programs as they facilitate young SCD adults transitioning to adult SCD care. Studies indicate that those young adults not transitioning to an adult provider are at higher risk of mortality.
Much of the research focused on the transition process has been on young adult readiness for transition, including the readiness of their families. However, there are behavioral and structural changes that can be made through coordination of care between adult and pediatric providers, which can dramatically improve transition outcomes regardless of adolescent readiness. These successful transition outcomes are demonstrated by the collaboration between pediatric providers at Connecticut Children’s Medical Center (CCMC) and the adult New England Sickle Cell Institute (NESCI) at UCONN Health and the changes implemented to their transition program over the past six years.
Methods: A retrospective analysis of CCMC patients seen in transition clinic and referred to the NESCI was performed from 2012- present by the CCMC registered nurse and the UCONN Health social worker, to assess how many patients had successfully transitioned to UCONN of those referred. For those patients who had not connected with a UCONN provider, CCMC staff attempted to contact them to ascertain if they had been connected to another hematologist or if they still needed an adult hematology provider. If a provider was needed, and the patient was willing, an appointment was scheduled at UCONN. A spread sheet was created to track where referred CCMC transitioning young adults were in the transition process. Clients who missed transition appointments were contacted by CCMC and the importance of transitioning was re-iterated. UCONN SW staff apprised CCMC of patient attendance, no-shows or cancellations at UCONN tour and initial appointments, who would then reinforce transition to UCONN and / or schedule a termination appointment with the transitioning young adult to celebrate their “graduation” to the adult provider. In this process, consistent behavioral changes on the part of the providers to ensure transition were implemented with excellent results.
Results: Use of this close tracking system and improved communication between the two institutions caused a 96% success rate in those young adult patients being referred to the adult provider successfully transitioning to care, from the period of 2012-2018 regardless of adolescent “readiness”. Provider focus on adolescent and young adult readiness for transition is important in terms of long term implementation of good disease management, however, it need not be a negating factor in the successful transition of young adults from pediatric to adult provider where disease management skills can continue to be worked on and develop over time under the care of the adult SCD comprehensive clinic.
Conclusions: Goals of adolescent “readiness” for transition are often abstract, difficult to define and vague in terms of pediatric and adult SCD provider team agreement on when patients are ready to transition. Changes on the part of the providers are in many ways easier to implement and can improve communication, provide consistent messages to patients and can lead to a smoother transition process. Improved success with transitioning pediatric SCD patients to SCD adult providers, can lead to better SCD health care and health outcomes.

Speakers
avatar for Teresa Works, MSW, LCSW

Teresa Works, MSW, LCSW

Clinical Social Worker, Property Management, Psychotherapist, UCONN Health
Teresa Works, LCSW, ACSW is a social worker with 25 years experience in medical and behavioral health settings. She is a doctoral candidate in social work research at the UCONN School of Social Work, where she also is an adjunct faculty member.  Teresa has been employed full time... Read More →


Saturday October 13, 2018 8:30am - 8:45am EDT
Constellation CD

8:45am EDT

Pilot Group For Middle Schoolers With SCD
Abstract

Authors:
Ms. Jennifer Brereton- Children’s Hospital of Philadelphia, Ms. Trudy Tchume-johnson- The Children’s Hospital of Philadelphia, Ms. Tahira Austin- The Children’s Hospital of Philadelphia

Background: The Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia (CHOP) provides care for over 1,000 children diagnosed with sickle cell disease (SCD). Children with chronic illnesses, such as SCD, are at a higher risk for developing social/emotional issues. Currently, individual and family therapy is offered in our clinic by our psychologist, but there has not been any recent attempts to offer services in a group format.
Objective: To establish and offer a group program to our patients with SCD. The group was designed to target patients in the middle school age range (11-14), and to provide these patients with psychoeducation about SCD, support around their illness, an opportunity to connect with others living with SCD, and to teach coping and alternative pain management strategies (e.g. yoga). We also wanted to look at various ways to inform families about the groups and to increase participation and engagement from the community.
Methods: Approximately 2 months prior to the start of the group, families with patients in the targeted age range were approached in clinic about the group. A flyer was developed for the group which was distributed in clinic and was sent to families via standard mail as well as emailed through the Center’s list serve. Reminders were sent out on a weekly basis. The groups were run by the Center’s pediatric psychologist, licensed social worker, and community health worker. Group participants were provided with dinner, reimbursement for parking/transportation, yoga mats, water bottles, and gift cards for their participation. Although parents were not included in the group, they were provided with a handout for each group outlining the contents of what was covered, as well as tips for parents on how to continue related discussions at home with their children. Pre- and post-assessments on SCD knowledge and coping strategies were also obtained. Group format was as follows:
Session 1: SCD Basics & Living with SCD
Session 2: SCD Psychoeducation & School/Peer Issues
Session 3: Pain and Coping with SCD
Session 4: Coping with Pain Continued & Introduction to Yoga
Results: The group was held for 4 evening sessions on consecutive weeks in June. The initial session consisted of 5 participants, sessions 2 & 3 had7 participants and the final session had 9 participants. The pre- & post questionnaires were administered to 7 of the 9 participants. The questionnaire revealed the following; 5 out of 7 participants improved their scores, 1 remained the same and 1 decreased.
The participants were engaged and appeared to enjoy the interactive ways of learning about their illness. Positive feedback was received from all group members, as well as their parents. Families expressed interest in having additional group sessions.
The Center is going to send out a survey to all patient families inquiring about desired times and frequencies of groups in the future in order to try and establish an ongoing group program during the academic year.
Conclusions:
Addressing some of the barriers related to attending group (e.g. transportation, parking, food), as well as providing participants with some rewards, may have helped with group attendance and engagement. Some families who did not participate expressed interest in the group, but were not able to make this particular group session due to scheduling conflicts. In addition, caregivers of children in other ages also expressed interest and inquired about groups for younger and older patients. However, the majority of the families in the targeted age group did not respond to the invites so additional methods of increasing participation and engagement need to be explored. The patients and families that did participate, expressed positive feedback about the group, and the majority of the participants who completed pre- and post-assessment measures related to SCD knowledge improved their scores. Due to the interest and engagement of this pilot group, the Center will be offering additional groups in the fall, as well as a yoga group (4 sessions) during the month of August 2018.

Speakers
avatar for Jennifer Brereton, PsyD

Jennifer Brereton, PsyD

Pediatric Psychologist, The Children's Hospital of Philadelphia
Jennifer Leigh Brereton, PsyD, is a psychologist in the Department of Child and Adolescent Psychiatry and Behavioral Sciences at Children's Hospital of Philadelphia.


Saturday October 13, 2018 8:45am - 9:00am EDT
Constellation CD

8:45am EDT

Psychosocial Impact, Health Beliefs And Stigma Of Leg Ulcers In Adults With Sickle Cell Disease In A National Sickle Cell Center
Abstract

Authors:
Ms. MARY AKUA AMPOMAH- GHANA INSTITUTE OF CLINICAL GENETICS/UNIVERSITY OF GHANA, LEGON, Dr. Kofi Anie- Imperial College, London,
Dr. Edeghonghon Olayemi- GHANA INSTITUTE OF CLINICAL GENETICS/UNIVERSITY OF GHANA, LEGON, Dr. Adote Anum- University of Ghana, Legon, Dr. Yvonne Dei- GHANA INSTITUTE OF CLINICAL GENETICS/UNIVERSITY OF GHANA, LEGON, Mr. David Nana Adjei- University of Ghana, Legon, Prof. Solomon Ofori-acquah- University of Ghana, Legon

Background: Sickle Cell Disease (SCD) is recognized as the most predominant hereditary hemoglobinopathy in Africa with a significant public health impact. Currently, owing to the early detection through newborn screening, advancement in medicine, nutrition and patient education, people with SCD are now living longer into adulthood. However, clinical and psychosocial concerns remain on many persistent chronic manifestations such as leg ulcers. Hitherto, the psychosocial, health beliefs, and stigma-related problems that are experienced by SCD patients with chronic leg ulcers remain poorly defined.
Objective: This study examined the psychopathology, psychosocial impact, stigma and health beliefs experienced by adult SCD patients with and without leg ulcers attending a National Sickle Cell Centre in Ghana.
Methods: A total of 84 adults with SCD participated in the cross-sectional study: 36 had chronic leg ulcers and 48 without leg ulcers. Participants were administered Symptom Checklist-90-R, Sickle Cell Illness Impact Measurement, Health Belief Model Questionnaire and an adapted version of the Stigma of Mental Illness Scale. Factorial Multivariate Analyses of Covariance (MANCOVA) were conducted to determine the influence of leg ulcer, gender, and age of diagnosis of SCD on psychopathology, psychosocial, stigma and health beliefs of SCD patients. Age and education measured in years were covariates in the analyses.
Results: Leg ulcer had no impact on psychopathology of SCD patients. There was a significant effect of age of diagnosis of SCD on social functioning in patients [(3, 55) = 3.09, p < .035, Wilks' Λ = .86, partial η2 = .14]. Adult patients diagnosed with SCD after early childhood (aged 11years and above) experienced poor social functioning compared to patients diagnosed during early childhood (aged below11 years) [Social functioning (mean difference) 5.95; 95% confidence interval (CI), .1.04-10.85; p < .02)]. Leg ulcer and age of diagnosis influenced patients’ perception of stigma (discrimination, disclosure and positive aspects sub-scales) [(3, 50) = 4.75, p < .005, Wilks' Λ = .78, partial η2 = .22; (3, 50) = 3.23, p < .03, Wilks' Λ = .84, partial η2 = .16]. Adult patients with leg ulcer reported more frequency of discrimination associated with SCD compared to patients without leg ulcer [discrimination (mean difference 6.52; 95% CI, 2.03-11.02]; p < .005]. In addition, adult patients diagnosed with SCD after early childhood also reported more discrimination than adult patients diagnosed with SCD during early childhood [discrimination (mean difference 5.80; 95% CI, 1.15-10.44]; p < .015]. In addition, leg ulcer influenced SCD health beliefs (perceived severity, vulnerability, benefits and barriers sub-scales) [(4, 48) = 4.37, p < .004, Wilks' Λ = .73, partial η2 = .27]. Adult patients with leg ulcer reported more perceived severity, perceived barriers and negative health beliefs relating to SCD compared to those without leg ulcers [perceived severity (mean difference 2.15; 95% CI, 0.4-3.9]; p < .02), p < .003), perceived barriers (mean difference 3.52; 95% CI, 1.38 -5.67] ; p < .002; negative health beliefs (mean difference 7.88; 95% CI, 3.38-12.8].
Conclusion: Overall, our findings show that early identification and assessment of leg ulcers and their related SCD health beliefs and stigma may provide avenues for enhancing the quality of life of adults with SCD and living with chronic leg ulcers in Ghana.

Speakers
avatar for Mary Akua Ampomah

Mary Akua Ampomah

Senior Clinical psychologist, Ghana Institute of Clinical Genetics
I am a Clinical Psychologist at the Ghana Institute of Clinical Genetics where the adolescent and adult sickle cell clinic is located. I have also served as a part-time lecturer at the Department of Psychology of the University of Ghana, Legon and currently teaching at the Regent... Read More →


Saturday October 13, 2018 8:45am - 9:00am EDT
Baltimore/ Annapolis

9:00am EDT

The Beats Program: Sickle Cell Health Education Through Music Therapy
Abstract

Authors:
Mr. Samuel Rodgers-Melnick- University Hospitals Connor Integrative Health Network

Objective: At University Hospitals Seidman Cancer Center, a music therapist working with the Adult Sickle Cell Disease (SCD) team developed the BEATS (Build, Educate, Advance, Transition, in Sickle cell disease) Music Therapy Program as part of a multidisciplinary SCD clinic to address self-efficacy, SCD knowledge, and adherence in young adults with SCD. Music therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. Music therapy is an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals (American Music Therapy Association [AMTA], 2018, para 1 and 2). Preliminary research in young adults with SCD age 18-23 revealed that participants in the BEATS program demonstrated significant improvements in SCD knowledge as well as slight improvements in adherence to Adult SCD Clinic appointments as compared to baseline (Rodgers-Melnick et al., 2017). Participants’ feedback from this preliminary study also indicated areas for improvement. These areas included more flexible scheduling options, providing multiple small groups per month instead of one large group, administering study measures electronically, and coordinating sessions with patients’ existing clinic appointments. This study sought to implement these improvements and further investigate the effects of the BEATS program on the self-efficacy, trust, disease knowledge, and adherence in young adults with SCD.
Methods: 50 young adult patients age 18-35 with SCD, including homozygous HbSS and compound heterozygous HbSC, HbSb+thal, or HbSb0thal, were recruited from the Adult SCD Clinic at UH Seidman Cancer Center/UH Cleveland Medical Center. Participants were scheduled to come to the hospital once every 2-3 weeks to participate in BEATS sessions, sometimes in conjunction with prescheduled SCD clinic appointments. Multiple small group sessions of up to 5 participants were scheduled every week to allow participants the flexibility to choose the sessions that best fit their availability. Participants were asked to participate in eight BEATS visits over an 8-month period. BEATS sessions included instrumental improvisation and educational music therapy interventions targeting the following topics: medication management skills, SCD pathophysiology, understanding severe symptoms of SCD, pain management, communication in the emergency room, blood transfusions, and reproductive health. The educational interventions included video presentations from hematologists, nurses, psychiatrists, physical therapists, transfusion coordinators, and other staff who work with adults with SCD. Additionally, the music therapist led practical hands-on demonstrations of health concepts and fill-in-the-blank songwriting exercises to reinforce the health information presented in the session.
Self-efficacy (Sickle Cell Self-Efficacy Scale), trust (Wake Forest Trust in the Medical Profession Scale), and SCD knowledge (Seidman Sickle Cell Knowledge Quiz) were measured via an electronic REDCap survey at five time points: 1) prior to BEATS sessions at baseline, 2) immediately following the fourth session, 3) 4 weeks after the fourth session, 4) immediately following the last session, and 5) 4 weeks after the last session. Health care utilization and adherence to scheduled Adult SCD Clinic appointments and certain medications were measured regularly throughout the study via medical record review. Participants also provided written evaluations of the BEATS program after the fourth and last sessions.
Results: Preliminary results suggest that the BEATS program improved SCD knowledge in the cohort of young adults that participated in this study. The modifications implemented as a result of participants’ feedback from an earlier study of the BEATS program led to improved attendance, coordination with clinic appointments, group cohesion, and study measure completion as compared to the previous study. Participants’ evaluations revealed positive responses to the BEATS program focusing on the importance of learning from others, finding social support, learning more about SCD, and learning new ways to manage pain. Responses also indicated further ways to improve the BEATS program that include having guest speakers, holding more groups, inviting more patients, and providing food and assistance with transportation/parking.
Final data on changes from baseline in self-efficacy, trust, SCD knowledge, and adherence are currently pending completion of follow up data in September 2018. These results will be shared in publications and presentations at upcoming conferences.
Conclusions: For individuals with SCD, young adulthood presents multiple physical, psychological, social, and economic challenges associated with living with the acute and chronic symptoms of SCD and navigating the adult health care environment. In response to these real and perceived needs of young adults with SCD, we designed a multidisciplinary program to engage patients in music therapy as a means of improving self-efficacy, trust, and knowledge as well as assisting patients in navigating the health care system. Preliminary data from this study continue to support the utility of the BEATS program as a means of improving SCD knowledge and the experience of care. Modifications implemented in response to participants’ feedback on previous programming were effective in improving session attendance and program feasibility. New educational interventions developed for this study were well received by participants. Ultimately, the BEATS program is a valuable tool for providers and community-based organizations seeking engaging and culturally-relevant interventions to improve the quality of care for young adults with SCD.

Speakers
avatar for Samuel Rodgers-Melnick

Samuel Rodgers-Melnick

Music Therapist, University Hospitals Connor Integrative Health Network


Saturday October 13, 2018 9:00am - 9:15am EDT
Constellation CD