scholarly journals Health Literacy, Self-Efficacy and Knowledge of Sickle Cell Disease Among Caregivers

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4841-4841
Author(s):  
Maite E. Houwing ◽  
Rowena Grohssteiner ◽  
Sonja A.M.C. Teuben ◽  
Jan A Hazelzet ◽  
Anne P.J. de Pagter ◽  
...  
Keyword(s):  
Health Literacy ◽  
The Netherlands ◽  
Health Information ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Research Funding ◽  
Healthcare Professionals ◽  
Cell Disease ◽  
Lower Education ◽  
The Relationship

Introduction Sickle cell disease (SCD) is a hereditary red blood cell disorder characterized by severe anemia, acute and painful vaso-occlusive crises and progressive organ failure. Success of health management of children with SCD is highly contingent on caregivers' capabilities. Caregivers of SCD affected children must perform a variety of tasks including communication with healthcare providers, reading and understanding of health information, interpretation of acute symptoms and administration of medication and complex decision making with regard to treatment options. A construct which describes the knowledge and competences of persons to meet the complex demands of health is 'health literacy' (HL) (1, 2). The measurement and assessment of HL is of growing importance due to expected and reported relationships between inadequate HL and health outcomes (3-5). In addition, caregivers with higher HL levels feel more confident in their ability to perform caregiving tasks, e.g. have a higher self-efficacy, often associated with higher quality of life (6, 7). Information on literacy levels and the relationship between HL, disease knowledge and self-efficacy may guide interventions in comprehensive SCD care. The aims of this study were to: (a) gain insight into levels of HL in caregivers of children with SCD using objective and subjective measures and to (b) assess the relationship between HL, caregivers self-efficacy' in communication with healthcare professionals and knowledge of SCD on different topics related to the illness. This abstract reports preliminary results. Methods In this cross-sectional, observational study, we included caregivers of children with SCD who attended the outpatient clinic of the Sickle Cell Comprehensive Care Center in the Erasmus Medical Center for a routine follow-up visit. Caregivers included in the study had to be able to communicate verbally in Dutch with professionals. HL was measured using the Short Assessment of Health Literacy in Dutch (SAHL-D) (8, 9); self-reported HL was evaluated by the Set of Brief Screening Questions (SBSQ) (10, 11). Self-efficacy was measured using the Perceived Self-Efficacy in Caregiver-Patient Interactions (PECPI) scale (12). Knowledge of SCD was assessed using a structured 13-item questionnaire (SCD-K) based on information and education provided in our clinic. Since data were not-normally distributed, they were analyzed using non-parametric statistics. Results To date, a total of 42 caregivers were included. Study inclusion will continue until at least 75 caregivers have been included. Demographics are presented in Table 1. Caregivers were mainly the child's mother (81.0%) often the single head of household (66.7%). The mean age of caregivers was 34.4 years. Educational level ranged from never attended school to post college Almost a quarter (23.8%) of caregivers was born in the Netherlands, others the rest were non-western migrants (76.2%). 78.6% of caregivers had low HL according to the SAHL-D. Caregivers with lower HL were more likely to have lower education (p=0.012) and to have been born outside the Netherlands (p=0.002). Only four caregivers (9.5%) reported having difficulties in understanding and applying health information (measured by SBSQ). The correlation between the SAHL-D and the SBSQ scores was weak (r=0.39). Mean scores on the SBSQ and PECPI were high, indicating that caregivers perceived their abilities for self-efficacy and their ability to read and understand medical information as quite high. Responses to individual SCD-K items however suggest large knowledge deficits: only 64.3% of caregivers knew which temperature is considered as fever [>38.0 °C or >38.5 °C] and only 14.3% was aware which risk factors are able to provoke sickle cell crises. The relationship between literacy status and item responses on SCD-K assessment scale was also examined. Caregivers with low literacy scored significantly lower on almost every individual item. Discussion Inadequate HL is highly prevalent in caregivers of children with SCD. Not being born in the Netherlands and lower education levels are strong predictors of low HL. Our study suggests that healthcare professionals should be attentive to possible low HL. In addition, these results underline that health information should be tailored to the HL skills and specific context of patients and their families. Disclosures Cnossen: NWO: Other: Governmental grants , ZonMW, Innovation fund and Nationale Wetenschapsagenda 2018; Roche: Other: Travel Grants; Takeda: Other: Travel Grants, Research Funding; Shire: Other: Travel Grants, Research Funding; Baxter: Other: Travel Grants, Research Funding; Sobi: Research Funding; CSL Behring: Other: Travel Grants, Research Funding; Nordic Pharma: Research Funding; Novo Nordisk: Research Funding; Pfizer: Other: Travel Grants, Research Funding; Bayer: Other: Travel Grants, Research Funding.

scholarly journals Validity and Reliability of Sickle Cell Self-efficacy Scale

2014 ◽  
Vol 8 (4) ◽  
pp. 31-35
Author(s):  
Sheyda Javadipour ◽  
Shiva Javadipour ◽  
Bijan Keikhaeidehdezi ◽  
Meymanat Akbari
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Research Center ◽  
Cell Disease ◽  
Validity And Reliability ◽  
Medical Sciences ◽  
Functional Activities ◽  
Rehabilitation Research ◽  
The Relationship

Correction: On 20/08/2014 the spelling of the third author was changed from Bijan Keykhah DehdeziTO Bijan Keikhaeidehdezi.Correction: On 20/08/2014 the affiliation of the first author was changed fromMusculoskeletal Rehabilitation Research Center, Jundishapur University of Medical Sciences of Ahvaz, IranTO Musculoskeletal Rehabilitation Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran Abstract:Background: psychometric properties of a 9-item self-appraisal scale for studying self-efficacy in sickle cell disease was evaluated in order to survey people’s comprehension of their capabilities to be engaged in functional activities of daily living who were suffering from sickle cell disease and in order to manage syndromes.Methods: the participants of this study were aged between 11-19 years with sickle cell disease under treatment for at least one year.Result: reliability analysis showed the internal consistency and correlation coefficient of the scale to be acceptable values. Construct validity analysis showed moderate positive correlation between the scores obtained using Sickle Cell Self-Efficacy Scale and those obtained using Mental Components Scale of SF36. There is a weak correlation between the score obtained from SCSES and that of Physical Components Scale of SF36.Conclusion: this scale can be used in the future for future studies on self-efficacy and also to find the relationship between this component and other components.DOI: http://dx.doi.org/10.3126/ijls.v8i4.10931

scholarly journals Neurocognitive Impairment Predicts Poor Transition Outcomes Among Patients with Sickle Cell Disease

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 519-519
Author(s):  
Anjelica C. Saulsberry ◽  
Marita Partanen ◽  
Jerlym S. Porter ◽  
Pradeep S. B. Podila ◽  
Jason R. Hodges ◽  
...  
Keyword(s):  
Gene Therapy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Research Funding ◽  
Clinical Development ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Outcomes ◽  
Ambulatory Services ◽  
The Relationship

Introduction: In the United States, most children with sickle cell disease (SCD) survive into adulthood and transfer from pediatric to adult-centered care. Cognitive deficits begin during childhood and are highly prevalent among individuals with SCD, potentially affecting their functional ability to establish adult care and navigate the new adult care environment. Lack of engagement in adult care can place youth with SCD at higher risk for care discontinuity and higher disease morbidity and mortality. The relationship between cognition and transition to adult care has not been examined. We hypothesized that better performance on measures of neurocognition were associated with decreased latency in initiating adult care, greater retention in adult care, and increased utilization of adult ambulatory services. As a secondary objective, we examined the relationship of environmental outcomes to transition outcomes. Methods: We included participants enrolled in the Sickle Cell Research and Intervention Program (SCCRIP; Hankins J. et al, Pediatric Blood and Cancer 2018), a longitudinal lifetime cohort study of individuals with SCD that monitors neurocognition. Participants were included if they underwent neurocognitive screening assessment in adolescence, prior to their transfer to adult care and if they satisfied their first appointment in adult care. The neurocognitive screening battery included measures of estimated global intelligence (Wechsler Abbreviated Scales of Intelligence, 2nd Ed; WASI-2) and sustained attention (Continuous Performance Test, 2nd Ed; CPT-2). Environmental factors included the Economic Hardship Index (EHI), guardian employment status while in pediatric care, and the number of persons living in the household. Use of adult ambulatory services was measured by the number of outpatient visits per patient-year. The association between cognitive performance and the latency from pediatric to adult care, adult care retention and environmental variables was examined using the 2-sample t test if the data were normally distributed or the Wilcoxon rank-sum test otherwise. Categorical variables were analyzed with the Chi-square test or Fisher's exact test. Transition outcomes were also analyzed as continuous variables using univariate linear regression. All reported p-values are two-sided. Results: Eighty adolescents with SCD ages 15-18 years at the time of their cognitive assessment (58% male, 63% HbSS/HbSβ0-thalassemia) were included; most transferred <6 months from the last pediatric visit Table 1). Of these 80 patients, 61 and 43 had sufficient follow-up time to examine their retention in adult care 12 and 24 months after transfer, respectively. Fifty out of the 61 patients (82%) remained in adult care > 12 months, and 31 of the 43 (72%) remained in adult care >24 months after their first adult visit. Higher Full-Scale IQ was associated with establishing adult care ≤2 months from last pediatric visit (Table 1; Figure 1A, 1B). Belonging to families with fewer children, smaller households and a higher WASI-2 Verbal Comprehension Index were associated with establishing adult care ≤6 months from last pediatric visit. Better CPT-2 Commissions performance (less attention deficit) was associated with increased adult care retention at 12 and 24 months (Table 2; Figure 1C,1D). Having a working guardian was associated with less retention at 12 months (p=0.01), whereas having an unemployed primary guardian was associated with greater retention at 24 months (p=0.02). Further, an employed guardian was associated with greater utilization of adult ambulatory services (p=0.01). EHI was not significantly related to transition outcomes. No relationship was found between adult ambulatory services and neurocognitive assessment. Conclusion: Neurocognitive deficit (lower IQ and attention deficits) may decrease short and long-term engagement in adult care among youth with SCD as demonstrated by longer latency periods between pediatric and adult care and shorter adult care retention. Socio-economic factors may also play a role in transition outcomes but require further investigation. Investigation of disease modifying therapies that preserve cognitive function should be prioritized. Interventions that account for patients' cognitive level and their environment should be considered in the individualization of transition plans. Disclosures King: Magenta Therapeutics: Membership on an entity's Board of Directors or advisory committees; Novimmune: Research Funding; Amphivena Therapeutics: Research Funding; Incyte: Consultancy; Tioma Therapeutics (formerly Vasculox, Inc.):: Consultancy; Cell Works: Consultancy; Bioline: Consultancy; Celgene: Consultancy; RiverVest: Consultancy; WUGEN: Equity Ownership. Wang:Agios Pharmaceuticals: Consultancy; Novartis: Consultancy. Zhao:MBIO: Other: St. Jude Children's Research Hospital has an existing exclusive license and ongoing partnership with Mustang Bio for the further clinical development and commercialization of this XSCID gene therapy. Kang:MBIO: Other: St. Jude Children's Research Hospital has an existing exclusive license and ongoing partnership with Mustang Bio for the further clinical development and commercialization of this XSCID gene therapy. Hankins:National Committee for Quality Assurance: Consultancy; NHLBI: Research Funding; Global Blood Therapeutics: Research Funding; Novartis: Research Funding; LYNKS Foundation: Research Funding; NHLBI: Honoraria; ASPHO: Honoraria; Bluebird Bio: Consultancy.

scholarly journals Improving Access to Healthcare for Pediatric Sickle Cell Disease Patients and Their Families

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4835-4835
Author(s):  
Maite E. Houwing ◽  
Marit Buddenbaum ◽  
Thijs C.J. Verheul ◽  
Anne P.J. de Pagter ◽  
Jan A Hazelzet ◽  
...  
Keyword(s):  
Health Care ◽  
Qualitative Study ◽  
Best Practices ◽  
Sickle Cell ◽  
Research Funding ◽  
Healthcare Professionals ◽  
Access To Healthcare ◽  
Cell Disease ◽  
Four Dimensions ◽  
The Right

Introduction Sickle cell disease (SCD) is a severe inherited red blood cell disorder with high morbidity requiring integrated comprehensive care. There are not many chronic diseases that primarily affect those from an often impoverished, minority background. Care delivery is complicated by disparities in healthcare regarding access. Cultural mismatches between providers and families also play a role. Healthcare access can be defined as the degree of fit between patients and the healthcare system (1, 2), and is described by four overlapping dimensions: physical accessibility, affordability, information accessibility and non-discrimination (3, 4). This qualitative study focuses on the challenges regarding the right to healthcare for children and adolescents with SCD and their families. The aims of this study were to (a) map the various perspectives and initiatives of SCD healthcare professionals, while focusing on existing best practices and lessons learned and (b) to provide practical recommendations relevant for high-income countries to improve accessibility of healthcare in SCD. Methods This qualitative study consisted of semi-structured, in-depth interviews which were conducted from February 1st to May 1st 2019 with SCD healthcare professionals, including (pediatric) hematologists, nurses, and psychosocial staff. Participants were affiliated with the SCORE (Sickle Cell Outcome REsearch) consortium which includes all SCD comprehensive care centers in the Netherlands (Fig 1). We identified eligible participants within SCORE and recruited participants using a combination of maximum variation and snowball sampling. Interviews occurred privately and were audio-recorded. The audio-recordings were transcribed verbatim and analyzed using the NVivoâ qualitative analysis software. Results Twenty-four healthcare professionals from different clinical sites participated in the study (Fig 1). Transcripts were coded into the four dimensions of health care access. Content analyses of the four dimensions in turn, revealed seven themes associated with best practices on topics related to improving accessibility of health care for children and adolescent SCD patients and their families (Fig 2). These themes included: 1) Cutting invisible costs: addressing the financial burden of a child with SCD; 2) Same-day appointments: reducing the amount of hospital visits; 3) Specialized and shared care: bridging the gap; 4) Optimizing methods of verbal and written communication: enabling mutual understanding between patients and healthcare professionals; 5) Building strong digital connections: improving the use of e-health while watching out for pitfalls; 6) Tools for patient empowerment and resilience: being aware of (self) stigmatization; and 7) Changing society: towards compassion and public awareness. Discussion The United Nations Convention on The Rights of the Child is the most widely signed and ratified human rights treaty and safeguards the right of the child to the enjoyment of the highest attainable standard of health. This right must be interpreted broadly, paying attention to all factors that may affect the realization of this right (5). Equity of access to healthcare for all patient populations requires the appreciation of intersecting vulnerabilities. This qualitative study provides best practices and solution-based recommendations from a grassroots-level to improve access to healthcare for children and adolescents with SCD and their families. Healthcare professionals experience a unique combination of intersecting vulnerabilities that characterize SCD patients and hampers their overall access to necessary healthcare. The seven key recommendations address these obstacles across all four dimensions of accessibility. Holistic implementation would positively impact the access to the highest attainable standard of healthcare for pediatric SCD patients and their families. These recommendations are built on local best practices that deserve wider implementation. They are especially relevant in the organization of SCD care, but all physicians will recognize these experiences with regard to healthcare in vulnerable patient populations in general. Disclosures Cnossen: Pfizer: Other: Travel Grants, Research Funding; Bayer: Other: Travel Grants, Research Funding; Novo Nordisk: Research Funding; Nordic Pharma: Research Funding; CSL Behring: Other: Travel Grants, Research Funding; Sobi: Research Funding; Baxter: Other: Travel Grants, Research Funding; Shire: Other: Travel Grants, Research Funding; Takeda: Other: Travel Grants, Research Funding; Roche: Other: Travel Grants; NWO: Other: Governmental grants , ZonMW, Innovation fund and Nationale Wetenschapsagenda 2018.

scholarly journals Social Vulnerability Is Associated with Emergency Department Dependency in Pediatric Sickle Cell Disease Patients

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4680-4680
Author(s):  
Kristina Lai ◽  
Peter A. Lane
Keyword(s):  
Emergency Department ◽  
Disease Severity ◽  
Healthcare Utilization ◽  
Sickle Cell ◽  
Social Vulnerability ◽  
Research Funding ◽  
Advisory Board ◽  
Cell Disease ◽  
Census Tract Level ◽  
The Relationship

Background: Sickle cell disease (SCD) is a complex genetic disorder characterized by significant, largely unpredictable heterogeneity in disease severity and healthcare utilization. The contribution of socioeconomic status (SES) and other environmental factors to this heterogeneity is poorly understood. In other disorders, SES is a major influence on healthcare quality and access, which can be affected by financial status, social stability, transportation, household overcrowding, and other variables. The multiplicative nature of these factors limits the ability to incorporate them in a single measure. The Social Vulnerability Index (SVI) was created by CDC to assist disaster management officials in identifying the locations of their most socially vulnerable populations (https://svi.cdc.gov/). SVI combines many of the SES factors that may contribute to disease severity and healthcare utilization. SVI has previously been validated for use assessing chronic conditions such as asthma, youth inactivity, and BMI. Thus, we hypothesized that SVI is associated with SCD-related severity and utilization. This analysis explores the relationship between census tract level social vulnerability and healthcare utilization in pediatric SCD patients. Methods: The Children's Healthcare of Atlanta's (CHOA) SCD Clinical Database houses a large, population-based cohort of pediatric sickle cell patients. It includes laboratory-confirmed SCD genotype, treatment history, and healthcare utilization for over 3,500 patients from 2010-2018. The database was queried for patients who had ≥1 SCD-related healthcare encounter from 2016-2018 and whose most recent address was in a metro Atlanta county. Addresses were geocoded and matched to CDC's SVI at the census tract level. The SVI combines 15 measures from the US Census and groups them into four related themes - SES, Household Composition & Disability, Minority Status & Language, and Housing & Transportation , which are combined into a percentile ranking of overall social vulnerability ranging from 0 (lowest) to 1 (highest). Patients were categorized by sickle cell anemia (SCA) genotypes (SS or Sβ0 Thalassemia) vs. other. Healthcare utilization was used to calculate the emergency department dependency ratio (EDR, ratio of ED visits to sum of ED and SCD clinic visits) and total inpatient days for acute illness as a measure of disease severity. As reported in previous studies, EDR was classified as high (>=0.33) or low (<0.33). SVI, age, and annual inpatient days were included as continuous variables. A logistic regression model was used to assess the relationship between SVI and EDR. SCA vs. other SCD genotypes, age, and total inpatient days were included as covariates and a backwards selection was used to find the best model. Results: Of the 2,578 active patients from 2016 to 2018, 1,328 met inclusion criteria. Mean age at the end of each measurement year was 10.0 years (SD=5.6), 47.7% were female, and 62.0% had SCA genotypes. Average inpatient days was 3.2 (SD=8.3). Average SVI was 0.50 (SD=0.28) and average EDR was 0.29 (SD=0.29); 44.8% of which were classified as high. All covariates were significant in the multivariate model. In the crude model, SVI was significantly associated with high EDR (OR=2.08, 95% CI: 1.62, 2.66). After controlling for inpatient length of stay, age, and genotype, SVI remained positively associated with high EDR (OR=1.85, 95% CI: 1.41, 2.44). Of the covariates, total hospital days (OR=1.28, 95% CI: 1.25, 1.32) was associated with a higher EDR. Older age (OR=0.97, 95% CI (0.96, 0.99) and SCA genotype (OR=0.41, 95% CI: 0.35-0.48), were negatively associated with high EDR. After controlling for SCA genotype, age, and length of stay, a 1 unit increase in SVI was associated with 85% greater odds of having a high EDR. Conclusions: The analysis demonstrates a significant relationship between SVI and EDR. Further analyses will assess the effect of distance to emergency department, treatment with hydroxyurea or chronic transfusions, and individual themes within SVI to further elucidate this relationship. A limitation of this analysis is that encounters were limited to those occurring at a CHOA facility. Overall, the results support our hypothesis that high social vulnerability is associated with increased reliance on the emergency department for care and that SVI may be a predictor of disease severity and increased healthcare utilization. Disclosures Lane: NHLBI: Research Funding; CDC: Research Funding; GA Dept: Other: Contract for newborn screeninjg follow-up services services; Bio Products Laboratory: Other: Sickle Cell Advisory Board; FORMA Therapeutics: Other: Clinical Advisory Board.

scholarly journals The Effect of Individualized Pain Plans for Patients with Sickle Cell Disease on Emergency Provider Satisfaction: A Win for the Patient Can be a Win for the Provider

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 1889-1889
Author(s):  
Sherraine Della-Moretta ◽  
Rui Li ◽  
David Way ◽  
Michael G (MD) Purcell ◽  
Melanie Heinlein ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Emergency Room ◽  
Sickle Cell ◽  
Research Funding ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Cell Disease ◽  
Satisfaction With Treatment ◽  
Pain Crisis ◽  
The Relationship

Abstract Background Sickle cell disease (SCD) is an inherited hematologic disorder that affects approximately 100,000 Americans and results in over 200,000 emergency departments visits annually, largely due to pain (Lanzkron et al). Delay in treatment in emergency room has been a significant barrier to patients with SCD, particularly adults. The objective of this study is to determine the effects of utilizing individualized pain plans for the treatment of vaso-occlusive crisis (VOC) on the satisfaction of healthcare providers in the emergency department (ED). Methods The Ohio State University has a comprehensive sickle cell center which creates individualized pain plans for patients who present to the ED with pain related to VOC. In January 2015, these pain plans were implemented into the electronic medical record listed in the overview of the problem sickle cell disease in each chart. In addition to creating pain plans, an interdisciplinary team was formed consisting of hematologists, pharmacists, and ED providers with the goal of education regarding SCD and the new implementation of pain plans. Surveys, using the secure web application, RedCAP, were distributed to the emergency department providers at the OSU ED. Questions included responders' role in the ED, prior experience with treating pain crisis, time to make treatment management decisions for VOC, satisfaction with treatment decision, and the providers view of their relationship with patients. Wilcoxon signed-rank test and Fisher's exact test were applied to evaluate the differences between pre and post survey numeric and categorical responses. Results Surveys were sent electronically to 170 ED providers. Sixty-nine responses, making up 40.5% of those surveyed, were obtained from 30 attending physicians, 2 fellows, 22 nurse practitioners or physician assistants, 1 registered nurse, and 14 residents. Of those who answered the survey, 14 had experience with treating pain crisis prior to the implementation of individualized pain plans. Implementation of individualized pain plans led to a reduction in median time to make treatment decisions from 5.5 to 2.5 minutes with a p-value of 0.0161. Provider satisfaction with treatment decisions improved as well (p = 0.0029) (Figure 2). In addition, ED providers felt more satisfied with their relationship with patients (p = 0.0078) (Figure 3). The majority of responders (91.2%) also rated their satisfaction with the treatment decision as either satisfied or very satisfied (Figure 1). Seventy eight percent of those answering the survey rated with relationship with patients as being good or very good (Figure 1). In terms of the ease of finding the pain plan in the electronic medical record, 91.3% of providers found them to be either very easy or easy to locate with 94.12% responding that implementing the plan was either easy or very easy (Figure 4). Regarding efficacy of the pain plans, 89.85% found the pain plans to be either effective or very effective (Figure 5). Finally, of the 36 providers who worked elsewhere, about half of the institutions from which they came did not have pain plans. Discussion The results of this study show the importance of utilizing individualized pain plans in the treatment of VOC in the ED. As shown in our prior studies, the implementation of individualized pain plans for patients with SCD resulted in a 48% decrease in time to first opioid in the ED, thereby signifying more prompt treatment (Della-Moretta et al). Not only does the data support an improvement in time to make treatment decisions, which benefit the patients, but providers also appear to view their use as an advantage. Pain plan utilization also leads to an increase in provider confidence in their treatment plans as well as a perceived improvement in patient-provider relationships. This is particularly significant as historically the relationship between emergency room staff and sickle cell patients has been seen as challenging by both patients as well emergency room providers (Haywood et al). Making patient centered individualized pain plans readily available, easily accessible, and simple to enact, can further enhance the relationship between the patient, emergency room, and the hematology team. Ongoing communication and education between all parties is beneficial. With the combination of patient and provider data, we show that a win for the patient can also be a win for the provider. Figure 1 Figure 1. Disclosures Desai: Pfizer: Other: Publication Fee, Research Funding; Novartis: Research Funding, Speakers Bureau; Global Blood Therapeutics: Honoraria, Research Funding; Foundation for Sickle Cell Research: Honoraria; Forma: Consultancy.

Feasibility of Medical Student Mentors to Improve Transition in Sickle Cell Disease

2021 ◽  
Author(s):  
Adrienne S Viola ◽  
Richard Drachtman ◽  
Amanda Kaveney ◽  
Ashwin Sridharan ◽  
Beth Savage ◽  
...  
Keyword(s):  
Medical Student ◽  
Medication Adherence ◽  
Health Literacy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Readiness ◽  
Student Mentor

Abstract Objective Advances in medical care have resulted in nearly 95% of all children with sickle cell disease (SCD) living to adulthood. There is a lack of effective transition programming, contributing to high rates of mortality and morbidity among adolescents and young adults (AYAs) during the transition from pediatric to adult healthcare. This nonrandomized study evaluated the feasibility, acceptability, and preliminary outcomes of a novel medical student mentor intervention to improve transition outcomes. Methods Eligible participants were ages 18–25 years, either preparing for transition or had transferred to adult care within the past year. Twenty-four AYA with SCD (Mage = 20.3, SD = 2.6) enrolled in the program and were matched with a medical student mentor. Feasibility and acceptability of the intervention was assessed through enrollment rates, reasons for refusal, retention rates, engagement with the intervention, satisfaction, and reasons for drop-out. Dependent t-tests were used to evaluate the preliminary effects of the intervention on patient transition readiness, health-related quality of life, self-efficacy, SCD knowledge, medication adherence, and health literacy. Results Participants (N = 24) demonstrated adequate retention (75.0%), adherence to the intervention (M = 5.3 of 6 sessions), and satisfaction with the intervention. Participants demonstrated significant improvements in transition readiness (p = .001), self-efficacy (p = .002), medication adherence (p = .02), and health literacy (p = .05). Conclusions A medical student mentor intervention to facilitate transition from pediatric to adult care for AYA with SCD is both feasible and acceptable to patients and medical students. Preliminary results suggest benefits for patients, warranting a larger efficacy study.

scholarly journals Antiphospholipid Antibodies in Sickle Cell Disease: A Systematic Review and Exploratory Meta-Analysis

2021 ◽  
Vol 27 ◽  
pp. 107602962110029
Author(s):  
Mira Merashli ◽  
Alessia Arcaro ◽  
Maria Graf ◽  
Matilde Caruso ◽  
Paul R. J. Ames ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Antiphospholipid Antibodies ◽  
Meta Analysis ◽  
Age Groups ◽  
Anticardiolipin Antibodies ◽  
Cell Disease ◽  
Pooled Prevalence ◽  
The Relationship

The relationship between antiphospholipid antibodies (aPL) and sickle cell disease (SCD) has never been systematically addressed. Our aim was to evaluate potential links between SCD and aPL in all age groups. EMBASE/PubMed was screened from inception to May 2020 and Peto odds ratios for rare events were calculated. The pooled prevalence (PP) of IgG anticardiolipin antibodies (aCL) was higher in individuals with SCD than in controls (27.9% vs 8.7%, P < 0.0001), that of IgM aCL was similar in the two groups (2.9% vs 2.7%); only individuals with SCD were positive for lupus anticoagulant (LA) (7.7% vs 0%, P < 0.0001). The PP of leg ulcers was similar between aPL positive and negative individuals (44% vs 53%) and between patients in acute crisis and stable patients (5.6% vs 7.3%). Reporting of aPL as a binary outcome and not as a titer precluded further interpretation. The results indicate that a prospective case-control study with serial measurements of a panel of aPL in SCD patients might be warranted, in order to understand further the possible pathogenic role of aPL in SCD.

scholarly journals Does Online Community Participation Contribute to Medication Adherence? An Empirical Study of Patients with Chronic Diseases

2021 ◽  
Vol 18 (10) ◽  
pp. 5100
Author(s):  
Jyh-Jeng Wu ◽  
Yueh-Mei Chen ◽  
Paul C. Talley ◽  
Kuang-Ming Kuo
Keyword(s):  
Medication Adherence ◽  
Chronic Diseases ◽  
Online Communities ◽  
Emotional Support ◽  
Self Efficacy ◽  
Online Community ◽  
Healthcare Professionals ◽  
Informational Support ◽  
Chronic Patients ◽  
The Relationship

Effectively improving the medication adherence of patients is crucial. Past studies focused on treatment-related factors, but little attention has been paid to factors concerning human beliefs such as trust or self-efficacy. The purpose of this study is to explore the following aspects of patients with chronic diseases: (1) The relationship between emotional support, informational support, self-efficacy, and trust; (2) the relationship between self-efficacy, trust, and medication adherence; and, (3) whether chronic patients’ participation in different types of online communities brings about significant statistical differences in the relationships between the abovementioned variables. A questionnaire survey was conducted in this study, with 452 valid questionnaires collected from chronic patients previously participating in online community activities. Partial Least Squares-Structural Equation Modeling analysis showed that emotional support and informational support positively predict self-efficacy and trust, respectively, and consequently, self-efficacy and trust positively predict medication adherence. In addition, three relationships including the influence of emotional support on trust, the influence of trust on medication adherence, and the influence of self-efficacy on medication adherence, the types of online communities result in significant statistical differences. Based on the findings, this research suggests healthcare professionals can enhance patients’ self-efficacy in self-care by providing necessary health information via face-to-face or online communities, and assuring patients of demonstrable support. As such, patients’ levels of trust in healthcare professionals can be established, which in turn improves their medication adherence.

scholarly journals COVID Symptoms and COVID Anxiety in Sickle Cell Disease

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 16-17
Author(s):  
Wally R Smith ◽  
Benjamin Jaworowski ◽  
Shirley Johnson ◽  
Thokozeni Lipato ◽  
Daniel M Sop
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Research Funding ◽  
Telephone Survey ◽  
Cell Disease ◽  
Weighted Mean ◽  
The Us ◽  
Associated Symptoms ◽  
At Home

Background Even before the US upswing of the current COVID pandemic, the number of sickle cell disease (SCD) patients coming to hospitals and EDs appeared to fall drastically. This happened despite SCD patients having often been heavy utilizers of the ED and hospital for their iconic vaso-occlusive crises (VOC). Though ambulatory SCD clinics quick converted largely to telehealth in order to comply with stay-at-home orders designed to suppress person-to-person transmission, some SCD patients appeared to avoid care, delay care, or refuse doctors' invitations for care. Presumably patients did so out of COVID fears, but this has not been confirmed in the literature. Further, whether these patients had COVID symptoms but stayed at home has not been studied. As part of quality improvement (QI) to conduct COVID surveillance in an adult sickle cell program, we sought to explain and predict SCD health care utilization patterns we were observing, as well as to determine urgent physical and mental health needs of patients who appeared to be avoiding care. Methods Fifteen staff in the Adult Sickle Cell Medical Home at Virginia Commonwealth University, a large urban academic medical center, conducted a telephone survey ("wellness check"was used when we talked to patients) of all known adults with SCD over 19 days in 2020. A staff member confirmed the patient had SCD, asked permission to proceed, then asked about symptoms consistent with COVID-19. At the end of the telephone survey, respondents wer invited to complete an email survey of sickle cell and COVID-19 utilization attitudes (19-33 items, depending on the response pattern, either drawn from the National Health Interview Survey, from the Adult Sickle Cell Quality of Life Measurement quality of care survey, or drafted by the authors), the Sickle Cell Stress Survey-Adult (SCSS-A, a 10-item previously validated survey), and anxiety and depression (PHQ9 of the PRIME-MD). Results Of 622 adults approached by phone call, 353 responded to the following yes/no screening questions regarding the prior 14 days: fever over 100 F 0/353 (0.00%); cough 3/353(0.01%); difficulty breathing 0/353(0.00%); unexplained shortness of breath 2/353(0.01%); sore throat 2/353 (0.01%); unexplained muscle soreness 2/353(0.01%);contact with anyone who tested positive for COVID-19 2/353(0.01%); testing for COVID 19 6/353(0.02%). For QI purposes, we set a threshold of three or more COVID-associated symptoms or the presence of fever as criteria requiring intense telephone or in-person staff monitoring for the following week. Only three patients met criteria. A total of 219/353 had email surveys sent. Of 63 patients (28.8%) who returned email surveys by June 10, 2020, 35.9% had already managed a "pain attack" at home 4 or more times in the prior 12 months, and 45.5% of these said their bad ER experiences were very or somewhat important in that decision. In the prior 14 days, although 30/64 reported a crisis for at least one day, only 4/64 had visited the Emergency Department for pain. On a 0-10 scale, 21/61 patients endorsed "0" for worry that they would be COVID-infected by going for medical care (weighted mean 3.9), but 18/59 endorsed "10" for worry they were more at risk of COVID because of SCD (weighted mean 6.31), and 22/60 endorsed "10" for worry they would fare worse than others if COVID infected (weighted mean 6.97). Many patients forwent "needed" care (16/62) or delayed "needed" care by at least a day (36/61). Eleven patients met criteria for moderately severe to severe depression on the PHQ-9, and 28/63 somewhat or strongly agreed with the statement "death is always on the back of my mind" on the SCSS-A. Conclusions In adolescents and adults with SCD, many were already reticent to come to the ED for pain, but a significant portion reported delays or avoidance of needed care during the early stages of the US COVID pandemic, and few reported using the ED despite over half reporting at least one crisis day in 14. Patients nonetheless reported very few COVID-associated symptoms. Fears of COVID infection/susceptibility may limit visits for needed sickle cell care among adults. Acknowledgements: Mica Ferlis RN, FNP, Caitlin McManus, RN, FNP, Emily Sushko, RN, FNP, Justin West, RN, Kate Osborne, RN, Stefani Vaughan-Sams, Marla Brannon, BS, Nakeiya Williams, BS Disclosures Smith: GlycoMimetics, Inc.: Consultancy; Emmaeus Pharmaceuticals, Inc.: Consultancy; Novartis, Inc.: Consultancy, Other: Investigator, Research Funding; Global Blood Therapeutics, Inc.: Consultancy, Research Funding; Shire, Inc.: Other: Investigator, Research Funding; NHLBI: Research Funding; Patient-Centered Outcomes Research Institute: Other: Investigator, Research Funding; Health Resources and Services Administration: Other: Investigator, Research Funding; Incyte: Other: Investigator; Pfizer: Consultancy; Ironwood: Consultancy; Novo Nordisk: Consultancy; Imara: Research Funding; Shire: Research Funding.

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