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 Food Insecurity, Quality of Life, Healthcare Utilization, and Clinical Disease Outcomes in AYA Patients with Sickle Cell Disease

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 972-972
Author(s):  
Sharjeel Syed ◽  
Kristen Wroblewski ◽  
Radhika Peddinti ◽  
Gabrielle Lapping-Carr ◽  
Wendy S Darlington
Keyword(s):  
Sickle Cell Disease ◽  
Food Insecurity ◽  
Social Determinants Of Health ◽  
Sickle Cell ◽  
Social Determinants ◽  
Determinants Of Health ◽  
Cell Disease ◽  
Disease Outcomes ◽  
Psychiatric Conditions

Abstract Sickle cell disease (SCD) is a chronic, debilitating condition that negatively impacts patient quality of life (QOL). In addition to causing frequent crises that lead patients to seek medical attention, it can also exacerbate socioeconomic inequities patients with SCD often already face. A specific subset of patients, adolescents and young adults (AYA), defined by the NCI as individuals ages 15-39, are particularly at risk, which can lead to worse outcomes and increased healthcare utilization (HCU). However, analyses on social determinants of health, QOL, HCU, and clinical disease outcomes (CDO) in SCD are limited, particularly among the AYA population. Our group seeks to investigate the impact of social determinants of health on patients with SCD. We have previously reported on food insecurity (FI), QOL, and HCU in children with SCD. This project aims to specifically study the interplay of these metrics further, while also incorporating CDO. Furthermore, we seek to understand these relationships in AYA patients and how they may be uniquely related in this population. We hypothesize that FI is associated with decreased QOL, increased HCU, and worse CDO. We also hypothesize that the magnitude of this association is greater in AYA patients. We designed an observational study where patients with SCD ages 0- 24 years were recruited during routine SCD visits from June 2015- June 2019. We designed a baseline survey to measure FI and QOL using validated instruments, including the USDA Food Security Short Form and the PedsQL TM Sickle Cell Disease module. All patients were also consented to participate in our clinical registry, allowing for abstraction of HCU and CDO. Surveys were scored and transformed via established methods: USDA FS (range 0-6; >1 indicating some level of FI), and PedsQL TM (range 0-100; ≤60 indicating low QOL). Chart review captured number of ER visits, admissions, annual rate of vaso-occlusive crises (VOC) and acute chest syndrome (ACS). Other CDOs were also captured and these included presence of neurocognitive/psychiatric conditions (i.e., silent stroke, DSM diagnosis), ischemic events like avascular necrosis, and surgeries like cholecystectomies. Linear regressions, Chi squared analyses, Wilcoxon rank-sum tests, and Fisher's exact tests were performed to check for differences within and amongst these variables based on AYA status. Of surveyed patients (n=115), 56% were female, 39% were AYA, and 75% had SS disease. Some level of food insecurity (FS score > 1) was present in 34% of our population (compared to 10.5% of households nationally per the USDA) with no difference observed between AYA and non-AYA patients (Coleman 7). Average QOL score was 74, but this differed significantly between AYA and non-AYA patients. Specifically, total QOL scores for AYA patient were 10 points lower (p=0.003) and AYA patients were three times as likely to have QOL scores < 60 (p=0.005). Additionally, as previously reported, all patients in the cohort with FI had lower QOL (p=0.008). FI was also tested against HCU. While no difference was observed in number of ER visits, median admissions were twice as high for those with FI (p=0.07). This relationship was not affected by AYA status, but AYA patients did have 1.5 times as many ER visits and admissions combined (p=0.03). Food insecurity was associated with certain CDO measures such as VOC rates, which were four times higher in FI patients (p=0.03), and ACS rates (p=0.03). VOC/ACS rates did not differ between AYA and non-AYA patients and AYA status did not affect the relationship between FI and these CDO. However, AYA patients did demonstrate higher rates of neurocognitive/psychiatric conditions (p=0.009), cholecystectomies (p=0.03), and avascular necrosis (p=0.003). This study indicates that FI among our SCD patients was highly prevalent, associated with worse QOL, and increased HCU. We also show that FI is associated with worse CDO, which is an impetus for future intervention. Although AYA status did not significantly affect the magnitude of these relationships, it was associated with worsened QOL, increased HCU, and worse CDO. We plan to further study these trends with additional variables associated with sickle cell CDO, the role of preventative care in these populations, and how other social determinants of health impact the care and outcomes of our patients. Coleman, et al. Household Food Security in the United States in 2019, USDA, Economic Research Service. Disclosures No relevant conflicts of interest to declare.

scholarly journals Social aspects of chronic transfusions: addressing social determinants of health, health literacy, and quality of life

Hematology ◽  
2020 ◽  
Vol 2020 (1) ◽  
pp. 175-183
Author(s):  
Jennifer Webb
Keyword(s):  
Quality Of Life ◽  
Health Literacy ◽  
Sickle Cell Disease ◽  
Social Determinants Of Health ◽  
Sickle Cell ◽  
Social Determinants ◽  
Determinants Of Health ◽  
Cell Disease ◽  
Transfusion Therapy

Abstract Chronic monthly transfusions are a lifesaving preventative therapy for many patients with sickle cell disease; however, the burden of this therapy for patients and families is high. In the United States, there is overlap in the population affected by sickle cell disease and those with the greatest burden of social needs. Hematology providers caring for patients with SCD have an opportunity to screen for and mitigate social determinants of health, especially in those receiving chronic transfusion therapy given the frequent interactions with the healthcare system and increased demand on already potentially limited resources. Given the complexity of the treatment and medication regimens, providers caring for patients receiving chronic transfusions should implement universal strategies to minimize the impact of low health literacy, as this therapy imposes a significant demand on the health literacy skills of a family. Despite the social and literacy burden of this intervention, it is reassuring that quality of life is preserved as patients with SCD on chronic transfusion therapy often report higher health related quality of life than their peers receiving other disease modifying therapies.

Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model

2020 ◽  
Vol 31 (1) ◽  
pp. 353-369
Author(s):  
Tilicia L. Mayo-Gamble ◽  
Velma McBride Murry ◽  
Jennifer Cunningham-Erves ◽  
Robert Michael Cronin ◽  
Nabilah Lari ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Community Health ◽  
Sickle Cell ◽  
Outcomes Research ◽  
Training Model ◽  
Cell Disease ◽  
Patient Centered

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 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.

Sign in / Sign up

Export Citation Format

Share Document