scholarly journals Electronic Health Record Tools to Promote Transition Readiness and Knowledge for Adolescents and Young Adults with Hemophilia

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4685-4685
Author(s):  
Jacob Parker ◽  
Katharine Farrow ◽  
Rosalie Brooks ◽  
Danielle Leonard ◽  
Fernanda Cortez ◽  
...  
Keyword(s):  
Safety Monitoring ◽  
Data Safety Monitoring Board ◽  
Patient Centered ◽  
Readiness Assessment ◽  
Transition Readiness ◽  
Data Safety ◽  
Safety Monitoring Board ◽  
Data Safety Monitoring ◽  
Patient Goals ◽  
Successful Transfer

Introduction: Challenges to the transition of care for adolescents and young adults with bleeding disorders negatively impact clinical outcomes. Transition of care is a Healthy People 2020 measure, and many Hemophilia Treatment Centers (HTCs) in the United States are developing a systematic approach based on the Got TransitionTM framework, which includes six core elements designed to aid patients and their families during this vulnerable period. To improve the quality of care delivered to transition-aged individuals with hemophilia, we developed a quality improvement initiative (QI) to track and monitor transition, to assess transition readiness, and to provide education based on patient-centered goals. Our global aim is to improve transition readiness and rate of successful transfer to an adult hemophilia provider by age 18-21y. We report results for the specific aim to increase the percentage of transition-aged individuals who complete transition readiness assessments and receive patient-centered goals education at annual comprehensive clinic appointments over a six-month cycle from 0 to 80%. Methods: We developed metrics and reports in Epic (electronic health record system) to track patients with hemophilia aged 12y and older who are eligible to begin the transition process. We also developed a Transition Readiness Assessment and a 15-question hemophilia-specific Skills Practicum to be completed by the patient in EPIC during their appointment. Based on responses to the Transition Readiness Assessment, patients select 2-3 goals for the year. Each selected goal generates a corresponding education handout. The tools are completed by patients with hemophilia between the ages of 12-21y at the time of rooming by the medical assistant for the annual comprehensive clinic appointment. Patients are excluded if they have significant developmental delays. During the appointment, the child life specialist for the HTC reviews the results of the Skills Practicum with the patient, and the HTC nurse reviews the Transition Readiness Assessment and the education handouts with the patient. Descriptive statistics were used to analyze the population and the results. Results: During the QI cycle, 20 of 43 transition-aged patients attended a comprehensive clinic visit and 17/20 (85%) completed all age-appropriate assessments. Patient characteristics and transition readiness results are shown in Table 1. The most frequently selected patient goals were "know my doctors' and nurses' names and roles" (29%), "know my doctor's phone number and call my doctor's office to make or change an appointment" (65%), and "have access to MyChart account and check MyChart" (47%). Four questions on the Skills Practicum test how to read a prescription. Five patients (29%) correctly answered all four questions. Conclusions: In summary, the Epic transition tools were successfully integrated into the HTC comprehensive clinic workflow, and 85% of eligible patients completed the assigned assessments. Utilization of MyChart is low, and access to MyChart was a frequently selected goal. Further work is underway to increase MyChart utilization which would facilitate workflow changes such that assessments may be completed in MyChart before the visit and educational and other resources can be accessed in MyChart. Achievement of patient goals, improvements in knowledge (e.g. how to read a prescription), and successful transfer are being tracked over time. Disclosures Thornburg: Sanofi Genzyme: Other: Data Safety Monitoring Board; Sanofi Genzyme: Research Funding; NovoNordisk: Research Funding; Genentech: Speakers Bureau; Bluebird bio: Other: Data Safety Monitoring Board; Ironwood: Other: Data Safety Monitoring Board.

scholarly journals Patient Reported Financial Toxicity in Acute Leukemia

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4796-4796 ◽  
Author(s):  
Thomas G. Knight ◽  
Myra Robinson ◽  
Michael R. Grunwald ◽  
Lauren M. Bohannon ◽  
Erin Blackwell ◽  
...  
Keyword(s):  
Acute Leukemia ◽  
Board Of Directors ◽  
Research Funding ◽  
Safety Monitoring ◽  
Data Safety Monitoring Board ◽  
Financial Toxicity ◽  
Advisory Committees ◽  
Data Safety ◽  
Safety Monitoring Board ◽  
Data Safety Monitoring

Abstract Background: Financial Toxicity (FT) is increasingly recognized as a major contributor to morbidity and mortality in a variety of cancers. Treatment of acute leukemia is associated with heavy healthcare utilization and high costs. The purpose of this study was to define rates, risk factors, and mortality implications for FT in patients with acute leukemia using patient reported data. Methods: All patients seen at the Levine Cancer Institute, a tertiary hospital-based leukemia practice, were surveyed prior to each visit over a six-month period. All patients were aged ≥18 years and were diagnosed with acute myeloid leukemia (AML) or acute lymphoblastic leukemia (ALL). The survey consisted of the PROMIS Global-10 measure and two questions from the COST measure. FT was defined as scoring 4 or less (maximum: 10) in agreement with the COST questions: "I know that I have enough money in savings, retirement, or assets to cover the costs of my treatment" and "I am satisfied with my current financial situation." Demographic data and disease characteristics were abstracted from the medical record. Model selection was carried out using logistic regression to identify factors impacting the incidence of financial toxicity. Correlation of numerical financial toxicity scores with PROMIS scores and with mortality data was assessed using linear regression. Results: Of the 106 patients, 58 (54%) met the definition of exhibiting FT. The factors associated with incidence of FT included: age, race, and insurance type. The odds of FT in those patients <65 years of age were 2.7 times the odds of FT in those ≥65, adjusting for race, insurance, and time since first treatment (95% CI: 0.884 - 8.438, p = .081). The odds of FT in African American patients were 4.3 times the odds of FT in Caucasian patients, adjusting for age, insurance, and time since first treatment (CI: 0.408 - 44.824, p = .150). The odds of FT in patients with Medicaid insurance were 14.2 times the odds of FT in patients with commercial insurance, adjusting for age, race, and time since first treatment (CI: 1.658 - 121.862, p = .106). Gender, distance from the hospital, type of acute leukemia, history of blood/marrow transplant, and history of relapsed disease were not found to be significant. There was a significant correlation for both the PROMIS global physical (p < .001) and mental (p < .001) scores with the FT score. Lower FT score (higher degree of FT) was associated with lower mental and physical scores. There was no statistically significant difference in survival between patients with FT scores >4 compared to patients with FT scores <=4; however, there was a trend toward decreased survival in those with lower FT scores (Figures 1 and 2). Conclusions: Patients with acute leukemia represent an extremely vulnerable population for financial toxicity with rates of distress even higher than other reported malignancies. Urgent interventions are indicated in this population. Disclosures Grunwald: Medtronic: Equity Ownership; Cardinal Health: Consultancy, Membership on an entity's Board of Directors or advisory committees; Genentech: Research Funding; Merck: Consultancy, Membership on an entity's Board of Directors or advisory committees; Forma Therapeutics: Research Funding; Janssen: Research Funding; Incyte Corporation: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Alexion: Consultancy, Membership on an entity's Board of Directors or advisory committees; Pfizer: Consultancy, Membership on an entity's Board of Directors or advisory committees; Ariad: Consultancy, Membership on an entity's Board of Directors or advisory committees; Agios: Consultancy, Membership on an entity's Board of Directors or advisory committees; Amgen: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Celgene: Consultancy, Membership on an entity's Board of Directors or advisory committees. Avalos:Juno: Membership on an entity's Board of Directors or advisory committees. Symanowski:Five Prime Therapeutics: Other: Data Safety Monitoring Board ; Boston Biomedical: Other: Data Safety Monitoring Board ; Eli Lily & Co: Other: Data Safety Monitoring Board; Immatics: Other: Data Safety Monitoring Board.

Hemophilia Prophylaxis No Longer Just for Children without Inhibitors - Increasing Use of Prophylaxis in Other Groups (children with inhibitors and adults with and without inhibitors)

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 3535-3535 ◽  
Author(s):  
Manuel Carcao ◽  
Maria L. Avila ◽  
Victor S. Blanchette ◽  
Elena Santagostino ◽  
Carmen Escuriola-Ettingshausen ◽  
...  
Keyword(s):  
Board Of Directors ◽  
Research Funding ◽  
Safety Monitoring ◽  
Data Safety Monitoring Board ◽  
Advisory Committees ◽  
Data Safety ◽  
Safety Monitoring Board ◽  
Data Safety Monitoring ◽  
Adults And Children

Abstract Background: Long-term prophylaxis is standard of care in children with severe hemophilia A (SHA) and B (SHB) without inhibitors. Studies have shown benefit from long-term prophylaxis in adults with SH and in both adults and children with SH and inhibitors. Yet there is little data on the prevalence of prophylaxis in these groups. Aim/Methods: To understand the current use of long-term prophylaxis in these groups of patients in countries capable of underwriting the high cost of prophylaxis we surveyed (2013) hemophilia treatment centers (HTCs) in countries where long-term prophylaxis in children is routinely used. Results: 134 HTC from 14 countries in North America, Australasia, and Western Europe reported on 4,763 adults with SH (4,011 SHA; 752 SHB) and on 751 children and adults with inhibitors. Prophylaxis use in these groups is shown in table 1: Table 1. Prophylaxis use in adults with SH (without inhibitors). Adults without inhibitors Children and adults with inhibitors HA HB In ITI setting In non-ITI setting % on Prophylaxis 59 49 29 28 Most common regimen EOD 2 d/wk FEIBA EOD or 3 d/wk FEIBA EOD or 3 d/wk EOD, every other day Adults without inhibitors: A higher proportion of SHA (59%) vs SHB adults (49%) were on prophylaxis (Χ2 p<.001). This was particularly true in the age group of 18-30 y [74% (SHA) vs 60% (SHB)]. For SHA the use of prophylaxis was progressively less in older age groups: 31-40 y (55%), 41-50 y (47%), 51-70 y (39%) and >70 y (29%). There was little drop in the proportion of SHB adults on prophylaxis with increasing age. 67% of SHA adults on prophylaxis were receiving ≥3 infusions/wk while 80% of SHB adults on prophylaxis were receiving ≥2 infusions/wk. Once/wk prophylaxis was reported in 3% of SHA and by 19% of SHB patients on prophylaxis. Daily prophylaxis was rarely reported in both groups. Children and adults with inhibitors: Data was available on 407 children and 344 adults with SH and inhibitors. Table 2 shows the proportion of children and adults on/not on Immune tolerance induction (ITI) and on/not on bypassing agent prophylaxis (BA-P). Most children (78%) were on either ITI (with or without BA-P) or on BA-P alone and as such were having some bleed protection. In contrast only 28% of adults were on either ITI (with or without BA-P) or on BA-P and as such most adults with inhibitors are not on any bleed protection. Table 2. Use of ITI and of BA-P in children and adults with SH (+ inhibitors). 403 children 344 adults On ITI. Not on BA-P 43% 8% On ITI. On BA-P 17% 4% Not on ITI. Not on BA-P 23% 71% Not on ITI. On BA-P 18% 16% In total, 185 patients had received FEIBA prophylaxis while 70 had received rFVIIa prophylaxis. FEIBA prophylaxis was particularly more common (vs. rFVIIa prophylaxis) in the non-ITI setting [FEIBA (n=107 pts) vs rFVIIa (n=33 pts)]. The most common prophylactic FEIBA regimen was EOD or 3/wk while the most common rFVIIa prophylaxis regimen was daily. Conclusions: This survey captured data on 4,763 adults with SHA/SHB and on 751 adults and children with SH and inhibitors. This is the largest survey of prophylaxis in these 2 groups of patients. Given the benefits of prophylaxis in children it is reassuring to observe that prophylaxis in adults (without inhibitors) is more prevalent than previously reported. Use of BA-P in patients with inhibitors still however lags far behind the use of prophylaxis in non-inhibitor patients - particularly in adults. FEIBA is more commonly used for prophylaxis than rFVIIa. Our survey did not capture longterm patient outcome data; this needs evaluation. Note: This abstract includes data presented as separate abstracts at the ISTH 2015 meeting. The data has been combined and analyzed in this abstract to show the increasing use of prophylaxis outside of children without inhibitors. Disclosures Blanchette: Pfizer: Honoraria, Membership on an entity's Board of Directors or advisory committees; Octapharma: Other: Data Safety Monitoring Board; Novo Nordisk: Honoraria, Membership on an entity's Board of Directors or advisory committees; Bayer Healthcare: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Baxter Corporation: Honoraria, Membership on an entity's Board of Directors or advisory committees, Other: Data Safety Monitoring Board, Research Funding. Santagostino:CSL Behring: Speakers Bureau; Pfizer: Research Funding, Speakers Bureau; Biogen/Sobi: Speakers Bureau; Bayer: Speakers Bureau; Novo Nordisk: Speakers Bureau; Baxter/Baxalta: Speakers Bureau; Kedrion: Speakers Bureau; Biotest: Speakers Bureau; Octapharma: Speakers Bureau; Roche: Speakers Bureau. Leissinger:Bayer: Membership on an entity's Board of Directors or advisory committees, Research Funding; Roche: Membership on an entity's Board of Directors or advisory committees, Research Funding; CSL Behring: Membership on an entity's Board of Directors or advisory committees, Research Funding; Novo Nordisk: Membership on an entity's Board of Directors or advisory committees, Research Funding; Baxter: Membership on an entity's Board of Directors or advisory committees, Research Funding; Kedrion: Membership on an entity's Board of Directors or advisory committees; Biogen: Research Funding; Pfizer: Membership on an entity's Board of Directors or advisory committees. Aledort:Baxter Healthcare: Membership on an entity's Board of Directors or advisory committees, Other: DSMB Participation; Kedrion BioPharma: Consultancy, Membership on an entity's Board of Directors or advisory committees.

Increasing Quality Improvement Capability in a Hemophilia Treatment Center

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5908-5908 ◽  
Author(s):  
Courtney Thornburg ◽  
Heidi Lane ◽  
Katharine Farrow ◽  
Rosalie Brooks ◽  
Mina Jahan ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Social Worker ◽  
Research Funding ◽  
Safety Monitoring ◽  
Data Safety Monitoring Board ◽  
Basic Knowledge ◽  
Improvement Program ◽  
Data Safety ◽  
Safety Monitoring Board ◽  
Data Safety Monitoring

Abstract Introduction Persons with hemophilia require complex medical care by a multi-disciplinary team throughout life. There are opportunities for Hemophilia Treatment Centers (HTC) to enhance the care of persons with hemophilia through participation in quality improvement (QI) initiatives. Maintaining comprehensive care and excellent health outcomes are national priorities for Health Resources and Services Administration (HRSA) and the American Thrombosis and Hemostasis Network (ATHN), the National Hemophilia Program Coordinating Center (NHPCC). Rady Children's Hospital San Diego (RCHSD) HTC participated in the NHPCC Dartmouth Improvement Program pilot program with the aim to develop QI capabilities within the HTCs to enhance the care of persons with hemophilia. Methods RCHSD participated in the NHPCC Dartmouth Improvement Program starting in December 2015. A QI team was established including the HTC medical director, nurse case managers, pediatric social worker and the social worker of the collaborating adult HTC. The QI team was coached by an expert TDIMA coach and a "coach in training" from another HTC. The team learned QI methods through in person training, web-based training and weekly team meetings with the coaches. The team assessed HTC data (The 5Ps-purpose, patients, professionals, processes, and patterns) to gain system knowledge and insights to determine a QI theme, global aim, specific aims and associated PDSA cycles. Results The RCHSD HTC QI team established a QI theme to focus on the transfer from pediatric to adult care. The Global Aim of the team is to improve autonomous communication in RCHSD HTC. The process begins with the 12 year old comprehensive clinic visit and ends with a new patient visit at an adult HTC. By working on the process, we expect patients to have the communication skills to be able to arrange medical insurance, call the home care company to order factor and to communicate their health and personal care needs to adult health care providers. We developed four specific aims which are in various stages of testing in PDSA cycles (Table 1). For Aim 1, we found that patients have only basic knowledge of insurance information. For Aim 2, we found that we needed to adjust our clinic process to make sure that patients receive their "after visit summary" that includes the insurance information prior to leaving clinic. Conclusions We developed a QI program within RCHSD HTC focused on improving transfer of care. Once we have completed the specific aim PDSA cycles we will standardize the new and improved procedures. We will continue to develop the program based on internal needs assessment and family input. This training model may be adapted by other HTCs to enhance patient care. Disclosures Thornburg: Mast Pharmaceuticals: Research Funding; Bayer Pharmaceuticals: Research Funding; Shire: Consultancy; Biogen Idec: Other: Data Safety Monitoring Board; Bluebird inc: Other: Data Safety Monitoring Board.

Adaptive designs from a Data Safety Monitoring Board perspective: Some controversies and some case studies

2017 ◽  
Vol 14 (5) ◽  
pp. 462-469 ◽  
Author(s):  
Bruce W Turnbull
Keyword(s):  
Clinical Trials ◽  
Case Studies ◽  
Adaptive Design ◽  
Safety Monitoring ◽  
Data Safety Monitoring Board ◽  
Adaptive Designs ◽  
Data Safety ◽  
Safety Monitoring Board ◽  
Data Safety Monitoring ◽  
Personal Experiences

This article describes vignettes concerning interactions with Data Safety Monitoring Boards during the design and monitoring of some clinical trials with an adaptive design. Most reflect personal experiences by the author.

scholarly journals 730. Hospital Readmissions Following Laboratory-Confirmed Influenza

2018 ◽  
Vol 5 (suppl_1) ◽  
pp. S262-S263
Author(s):  
David Dobrzynski ◽  
Danielle Ndi ◽  
Tiffanie Markus ◽  
Yuwei Zhu ◽  
William Schaffner ◽  
...  
Keyword(s):  
Hospital Readmissions ◽  
Safety Monitoring ◽  
Data Safety Monitoring Board ◽  
Categorical Variables ◽  
Discharge Data ◽  
Data Safety ◽  
Safety Monitoring Board ◽  
Data Safety Monitoring ◽  
Increased Risk ◽  
Research Grant

Abstract Background Further understanding of hospital readmissions after influenza illness could reduce readmissions. The aim of our study was to characterize the morbidity associated with laboratory confirmed influenza hospitalizations. Methods This was a retrospective study using data from 2006 to 2016 from the Tennessee (TN) Emerging Infections Program Influenza Surveillance Network, which prospectively identifies laboratory-confirmed influenza hospitalizations in Nashville, TN and surrounding counties. Using the TN Hospital Discharge Data System, which collects information on all hospitalizations and discharges in TN, cases were linked to subsequent hospitalizations up to 1 year. The International Classification of Diseases was used to define the primary diagnosis associated with each hospitalization. Demographic characteristics and outcomes were compared by using χ2 tests for categorical variables. Multivariable logistic regression was used to compare study outcomes. Results Of the 2,897 patients with a laboratory-confirmed influenza hospitalization, 1,364 (47%) had a hospital readmission during the subsequent year (figure). Multiple readmissions occurred in 740 patients (54%). The readmission group was older, female predominant, and had more comorbidities than patients not re-hospitalized. Acute COPD/asthma exacerbation, pneumonia, septicemia, and acute renal failure were the most common causes for readmission. Underlying cardiovascular disease (OR 1.6), lung disease (OR 1.6), kidney disease (OR 1.7), diabetes (OR 1.3), immunosuppression (OR 1.6), and liver disease (OR 2.1) were associated with increased risk of readmission (table). Conclusion An influenza hospitalization is associated with increased hospital readmissions. Approximately 47% of patients hospitalized with influenza are readmitted within 1 year. Patient comorbidities could be an important link to influenza readmissions. Disclosures W. Schaffner, Merck: Member, Data Safety Monitoring Board, Consulting fee. Pfizer: Member, Data Safety Monitoring Board, Consulting fee. Dynavax: Consultant, Consulting fee. Seqirus: Consultant, Consulting fee. SutroVax: Consultant, Consulting fee. Shionogi: Consultant, Consulting fee. H. K. Talbot, sanofi pasteur: Investigator, Research grant. Gilead: Investigator, Research grant. MedImmune: Investigator, Research grant. Vaxinnate: Safety Board, none. Seqirus: Safety Board, none.

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