scholarly journals High Healthcare Utilization in Adolescents with Sickle Cell Disease Prior to Transition to Adult Care: A Retrospective Study

2019 ◽  
Vol 6 (3) ◽  
pp. 174-184 ◽  
Author(s):  
Julie Kanter ◽  
Menaka Bhor ◽  
Xin Li ◽  
Yunfeng Li ◽  
Jincy Paulose
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Index Date ◽  
Transition To Adult Care ◽  
Cell Disease ◽  
Adult Care ◽  
Old Patients ◽  
Management Interventions ◽  
Increased Risk ◽  
One Year

Background: The transition from pediatric to adult care in the US is often difficult for individuals with sickle cell disease (SCD). Young adults (18 to 25 years of age) have higher acute care utilization and an increased risk of poor outcomes. The current study was designed to provide greater insights into patients (16 to 18 years of age) with SCD prior to their transition to adult care. Objectives: To describe current treatment patterns, pain crises prevalence, SCD-related complications, and healthcare resource utilization (HCRU) in 16-to-18-year-old patients with SCD. Methods: From 1/1/2015-6/30/2017 using MarketScan Databases, patients were included if they were 16 to 18 years old at the index date, had ≥1 inpatient or 2 outpatient SCD diagnosis claims during the identification period, and were continuously enrolled in the database for at least one year prior (baseline) and post index date. Outcomes included medications, disease management interventions, Charlson Comorbidity Index (CCI), vaso-occlusive (VOC) crises requiring healthcare visits, HCRU, and SCD complications. Results: 1,186 patients were included; most (64.3%) were female. The mean CCI was 1.3 (SD: 0.7). In the overall cohort, patients experienced an average of 3.9 (SD: 4.2) VOCs and most patients (61.1%, n=725) had chronic complications during the one-year follow-up. Pulmonary disease (31.1%, n=369) was the most frequent complication; blood transfusions (mean: 8.4 [SD:7.0]) and iron-chelating therapies (mean: 8.6 [SD:10]) were the most common interventions and medications, respectively. In the 16 to 18 year old group, patients with SCD had 2.0 (SD = 2.3) hospital admissions, 3.4 (SD = 4.0) ER visits, and 5.0 (SD = 4.2) office visits. Conclusions: Prior to transition to adult care, adolescents with SCD already have significant acute and chronic disease-related complications, possibly contributing to frequent healthcare visits. Increased attention to this age group, including improvements in disease modifying therapy, are needed prior to transition to adult care systems to improve outcomes.

scholarly journals A Patient-Centered Approach to Gathering Information on Social Determinants of Health from Patients with Sickle Cell Disease in Preparation for Their Transition to Adult Care

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4943-4943
Author(s):  
Katherine EC Smith ◽  
Jessica R Cox ◽  
Rosalind L Haynes ◽  
Nicole Ivette Bohnker ◽  
Kay L Saving
Keyword(s):  
Sickle Cell Disease ◽  
Community Health ◽  
Social Determinants Of Health ◽  
Sickle Cell ◽  
Social Determinants ◽  
Determinants Of Health ◽  
Transition To Adult Care ◽  
Cell Disease ◽  
Adult Care ◽  
Patient Centered

Abstract Background: Transition from pediatric to adult care has been a recent focus of sickle cell programs across the country due to patients with sickle cell disease (SCD) to living longer. 1 Transition programs for other chronic conditions focus largely on patient knowledge of the disease, treatments, and appointment compliance but for patients with SCD, social determinants of health (SDOH) must also be considered when guiding patients toward adult care. 2 Historically, lack of acknowledgement of the importance of relationships and trust building when addressing SDOH has led to barriers in patient responsiveness. 3 To facilitate this aspect of transition, our recently hired Community Health Worker (CHW) developed a Community Health Transitional Questionnaire (CHTQ) and conducted a Quality Improvement (QI) project to address SDOH in a patient-centered manner during transition to adult care visits at the clinic. Aims: Refine the CHTQ by gathering the "voice of the customer" to provide a more patient-centered approach to transition to adult care for patients with SCD. Complete the CHTQ with 70% of transition-aged (12-25 years) patients by 7/1/21. Methods: The CHTQ consists of 32 questions about SDOH in 8 categories (Food, Housing, Money/Finances, Transportation, Education/Work, Family and Other Support, Stress Prior to/After COVID, and Sleep). Thirty pediatric sickle cell patients were identified as being within the established transitional age group. A series of Plan-Do-Study-Act (PDSA) cycles were used to refine the CHTQ. Through patient/caregiver feedback, small increments of change were used to establish a CHTQ that would improve patient care and be accepted by the patients/caregivers. PDSA #1: During regularly scheduled appointments, two patients and their caregivers met with the CHW who described the purpose of the CHTQ and then asked the patient to privately complete the CHTQ. PDSA #2: Because of feedback received from PDSA #1, the CHW allowed the next two patients to have caregivers present while answering the CHTQ, but explained that ideally the patient should be able to answer the CHTQ without input from their caregiver before transition to an adult environment. PDSA #3: Because of the feedback received from PDSA #2, the CHW accompanied the clinic RN to the exam room and worked the CHTQ into the nursing check-in questions in an informal manner making the questions seem more routine. Results: After 3 PDSA cycles, 17 additional patients/caregivers completed the CHTQ without issues or concerns. A total of 22/30 (73%) CHTQs met the goal of completion by 7/1/21. One additional CHTQ has been completed since. Using the information from the CHTQ, the team has been able to better address individualized SDOH for each patient. For example, one area of concern identified was transportation with 9/23 (39%) patients expressing concerns getting to & from appointments and/or school/work. Transportation needs were then discussed with the clinic social worker who is now working with those patients, giving them tools to arrange transportation. Conclusion For SCD patients, it appears imperative that a relationship be established prior to inquires about SDOH. Using an informal patient-centered approach with the CHTQ was more likely to gain patient trust and allowed the CHW to obtain information needed to assist the patient with SDOH issues. Once SDOH issues were identified through the CHTQ, the CHW was able to find patient-driven, individualized resources addressing those concerns. References DeBaun, M.R. & Telfair, J. (2012). Transition and Sickle Cell Disease. PEDIATRICS, 130(5), 926-935 https://doi.org/10.1542/peds.2011-3049 Andermann, A. (2016). Taking action on the social determinants of health in clinical practice: a framework for health professionals. Canadian Medical Association Journal, 188(17-18), E474-E483. https://doi.org/10.1503/cmaj.160177 Cheney, C., Pecci, A., & Porter, S (2020, May). Social Determinants of Health: Lead or Partner. HealthLeaders. https://www.healthleadersmedia.com/clinical-care/social-determinants-health-lead-or-partner-0 Disclosures No relevant conflicts of interest to declare.

scholarly journals G409(P) An evaluation of the transition to adult care for young patients with sickle cell disease

2015 ◽  
Vol 100 (Suppl 3) ◽  
pp. A168.2-A169
Author(s):  
H Sivaguru ◽  
S Mohun Kemp ◽  
R Crowley ◽  
G Hann ◽  
DA Yardumian ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Young Patients ◽  
Transition To Adult Care ◽  
Cell Disease ◽  
Adult Care

scholarly journals Providers' Perspectives and Beliefs Regarding Transition to Adult Care for Adolescents with Sickle Cell Disease

2004 ◽  
Vol 15 (3) ◽  
pp. 443-461 ◽  
Author(s):  
Joseph Telfair ◽  
Leah R. Alexander ◽  
Penny S. Loosier ◽  
Patty L. Alleman-Velez ◽  
Julie Simmons
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Transition To Adult Care ◽  
Cell Disease ◽  
Adult Care

scholarly journals Transition to adult care in sickle cell disease: A longitudinal study of clinical characteristics and disease severity

2018 ◽  
Vol 66 (1) ◽  
pp. e27463 ◽  
Author(s):  
Mariam Kayle ◽  
Sharron L. Docherty ◽  
Richard Sloane ◽  
Paula Tanabe ◽  
Gary Maslow ◽  
...  
Keyword(s):  
Longitudinal Study ◽  
Sickle Cell Disease ◽  
Disease Severity ◽  
Sickle Cell ◽  
Clinical Characteristics ◽  
Transition To Adult Care ◽  
Cell Disease ◽  
Adult Care

scholarly journals Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease

2017 ◽  
Vol 42 (9) ◽  
pp. 1016-1027 ◽  
Author(s):  
Jerlym S. Porter ◽  
Kimberly M. Wesley ◽  
Mimi S. Zhao ◽  
Rebecca J. Rupff ◽  
Jane S. Hankins
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Care Transition ◽  
Cell Disease ◽  
Adult Care

Lead Neuropathy and Sickle Cell Disease

PEDIATRICS ◽  
1974 ◽  
Vol 54 (4) ◽  
pp. 438-441
Author(s):  
Gerald Erenberg ◽  
Steven S. Rinsler ◽  
Bernard G. Fish
Keyword(s):  
Case Report ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Lead Poisoning ◽  
Cell Disease ◽  
Hemoglobin S ◽  
Increased Risk ◽  
Rare Manifestation ◽  
Poisoning In Children

Four cases of lead neuropathy in children with hemoglobin S-S or S-C disease are reported. Neuropathy is a rare manifestation of lead poisoning in children, and only ten other cases have been well documented in the pediatric literature. The last previous case report of lead neuropathy was also in a child with hemoglobin S-S disease. The neuropathy seen in the children with sickle cell disease was clinically similar to that seen in the previously reported cases in nonsicklers, but differed in both groups from that usually seen in adult cases. It is, therefore, postulated that children with sickle cell disease have an increased risk of developing neuropathy with exposure to lead. The exact mechanism for this association remains unknown, but in children with sickle cell disease presenting with symptoms or signs of peripheral weakness, the possibility of lead poisoning must be considered.

scholarly journals Prevalence and Predisposing Factors of Atrial Fibrillation in a Multi-Ethnic Society: The Impact of Racial Differences in Bahrain

2011 ◽  
Vol 4 ◽  
pp. OJCS.S8032 ◽  
Author(s):  
Taysir Garadah ◽  
Saleh Gabani ◽  
Mohamed Al Alawi ◽  
Ahmed Abu-Taleb
Keyword(s):  
Atrial Fibrillation ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Middle Eastern ◽  
Predisposing Factors ◽  
Cell Disease ◽  
Clinical Events ◽  
History Of ◽  
The Mean ◽  
One Year

Background The prevalence and epidemiological data of atrial fibrillation (AF) among multi-ethnic populations is less well studied worldwide. Aim Evaluation of the prevalence and predisposing factors of AF in patients who were admitted to acute medical emergencies (ER) in Bahrain over the period of one year. Methods Two hundred and fifty three patients with onset of AF were studied. The mean difference of biochemical data and clinical characteristics between Middle Eastern (ME) and sub continental (SC) patients was evaluated. The odds ratio of different predisposing factors for the development of clinical events in AF patients was assessed using multiple logistic regression analysis. Results Out of 7,450 patients that were admitted to ER over one year, 253 had AF based on twelve leads Electrocardiogram (ECG), with prevalence of 3.4%. In the whole study, the mean age was 59.45 ± 18.27 years, with 164 (65%) male. There were 150 ME patients (59%), and 107 (41%) SC, 55 (22%) were Indian (IND) and 48 (19%) were South Asian (SA). In the whole study clinical presentation was of 48% for palpitation, pulmonary edema was of 14%, angina pectoris on rest of 12%, 10% had embolic phenomena, 6% had dizziness, and 7% were asymptomatic. The odds ratio of different variables for occurrence of clinical events in the study was positive of 2.2 for history of hypertension, 1.8 for sickle cell disease, 1.2 for high body mass index (BMI) >30, 1.1 for mitral valve disease. The ME patients, compared with SC, were older, had significantly higher body mass index, higher history of rheumatic valve disease, sickle cell disease with high level of uric acid and lower hemoglobin. The history of hypertension, DM and smoking was higher among the SC patients. The rate of thyroid disease was equal in both groups. Conclusion The prevalence of atrial fibrillation was 3.4% with male predominance of 65%. Patients of sub continental origin were younger with a significantly high history of hypertension and ischemic heart disease. The patients of Middle Eastern origin had significantly high rate of rheumatic heart disease, and sickle cell disease. The history of hypertension was the most important independent clinical predictor of adverse events in patients presented with AF.

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