scholarly journals Episodes of High Emergency Department Utilization Among a Cohort of Persons Living with Sickle Cell Disease

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 159-159
Author(s):  
Susan T Paulukonis ◽  
Eric Roberts ◽  
Ron Brathwaite ◽  
Ted Wun ◽  
Mary M Hulihan
Keyword(s):  
Health Care ◽  
Emergency Department ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Research Funding ◽  
Case Definition ◽  
Inpatient Stay ◽  
Cell Disease ◽  
One Year

Abstract Introduction: Previous research has shown that persons living with sickle cell disease (SCD) are at risk for frequent emergency department (ED) encounters, either with or without an associated inpatient stay. The disease manifests as acute onset vaso-occlusive crises or other severe and unpredictable complications that require immediate care. However, day hospital or other appropriate care settings to manage these health care events are not available to most of the population with SCD. Previous observations suggest that-while ED usage is high overall for this population-this usage is also episodic, with periods of high use interspersed with relatively low usage. We here seek to characterize both high-use and quiescent periods among patients seen in California non-federal hospitals over a 12-year period. Methods: The California Sickle Cell Data Collection project is a statewide effort to use a wide range of administrative, clinical, and other data sources to describe the population living with SCD, their health outcomes, and health care utilization patterns. The data here include 2005-2016 inpatient encounters and ED encounters (with or without an associated inpatient stay) linked by patient identifiers across data set and year. A validated case definition that suggests a high probability of a true SCD 'case' was applied: three or more occurrences of a SCD specific International Classification of Disease Code (version 9 or 10, depending on the year) within any 5 year period between 2005-2016. Only patients who met this case definition and had one year or more of follow-up time in the cohort were included in these analyses. We tabulated the numbers of encounters (inpatient and ED) for each patient for non-overlapping 4-week periods and used Poisson mixture models to evaluate whether encounter frequency could be characterized as a mixture of one or more discrete distributions. Based on these findings, we examined the timing and duration of periods of ED utilization for patients over the course of the study. Quiescent periods are defined as lengths of time in which a person has zero or near zero encounters in ED or inpatient settings. Occasional and high use periods of ED utilization are defined quantitatively by the model (as below). Results: There were 5,090 patients meeting the case definition with one year or more of time in follow up. Patients were followed for a median of 9.8 years (range 1.0 to 11.0). There were 94,196 ED encounters without and 59,064 ED encounters with an associated inpatient stay. A 3-component model best combined predictive power, parsimony, and clinical relevance (Figure 1, upper left), including quiescent periods (mean 0.09 encounters; 88.8% of 4-week periods); occasional-use periods (mean 1.28encounters; 10.8% of 4-week periods); and high-use periods (mean 7.48 encounters; 0.5% of 4-week periods). All but two of the subjects experienced at least one quiescent period during the study, 75.9% experienced at least one occasional-use period, and 8.0% experienced at least one high-use period. Spells of occasional- or high-use lasted a median of 8 weeks regardless of patient age, and 3.6% of these included at least some very high-use. Median lengths of quiescent periods were 24 weeks for patients aged less than 20 years, 16 weeks for those 20 years of age and older. Examples of distribution of utilization over time by certain patients are shown in Figure 1, upper right and both lower panels. Conclusions: The majority of patients with sickle cell disease experience discrete periods during which ED and inpatient hospital encounters are not uncommon, separated by somewhat longer periods with few-to-no encounters. The experiences of -8.0% of patients further include periods during which encounters were very frequent. Patients aged 20 years and older are more likely to experience these high frequency episodes. Further research is planned to identify whether particular health related events or patient characteristics are associated with these high-utilization spells. Figure 1 Figure 1. Disclosures Paulukonis: Bioverativ Inc.: Research Funding; Pfizer Inc.: Research Funding; Global Blood Therapeutics Inc.: Research Funding.

Emergency Department Follow-up for Adults with Sickle Cell Disease.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 241-241
Author(s):  
Paula Tanabe ◽  
John W Hafner ◽  
Zoran Martinovich ◽  
Elena Zvirbulis ◽  
Ted Wun ◽  
...  
Keyword(s):  
Emergency Department ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Research Funding ◽  
Free Text ◽  
Cell Disease ◽  
Initial Interview ◽  
Pain Scores ◽  
Fund Research

Abstract Abstract 241 Study Objectives: To report the patients' ability to make and keep follow-up appointments, obtain analgesic prescriptions, and continued presence of pain for adult emergency department (ED) patients with sickle cell disease, seven and 30 days post ED visit. Barriers to making and keeping appointments and filling analgesic prescriptions were explored. Methods: A multi-center, prospective, longitudinal surveillance study enrolled patients from three academic medical centers (rural and urban). All ED patients ≥18 years with a chief complaint of a sickle cell pain episode were eligible for inclusion. Patients participated in an initial interview within 14 days of their ED visit and/or a second interview 21–37 days from their ED visit. Patients were interviewed at most once per month. The initial interview was conducted either during the hospitalization if admitted, or by follow-up phone call. The 2nd interview was conducted by phone. Pain scores at the time of both interviews were obtained. During the 2nd interview patients were asked if they were able to (1) make and keep a follow-up appointment, (2) whether or not they received and were able to fill an analgesic prescription and (3) associated barriers to either. Each study site conducted a minimum of 10 interviews per quarter. The study period was from October 2007 through July 2009. Descriptive statistics were used to report the data. A paired t-test was used to analyze differences in 7 and 30 day pain scores. Qualitative analysis was used to analyze free text barrier responses to making and keeping an appointment and filling prescriptions. Results: One hundred fifty seven initial interviews and 108 second interviews were completed, 80 different patients, 51% male, mean age 34±10, ages 18–51. Sixty six percent of patients reported they were able to obtain an appointment with a primary care physician after discharge. Of those with difficulty getting an appointment, barriers included: patient did not attempt to obtain an appointment (24%), no current appointments available (21%), difficulty getting a hold of MD office (18%), difficulty finding an MD (15%), no time to go to appointment (9%), lost MD phone number (6%), unspecified (6%), and no money for appointment (3%). Sixty six percent of patients with an appointment reported keeping their appointment or had a future appointment scheduled. Reasons why patients did not keep their appointment included: had to work, out of town, in hospital before appointment, forgot when appointment was, no money for appointment. At discharge from the ED or hospital, 70% of patients reported they needed an analgesic prescription and 66% of patients received a prescription for analgesics. Nineteen percent of patients reported difficulty filling their prescription. Difficulties included: prescription written incorrectly, dose was not available at pharmacy, pharmacy was closed, no money for prescription, homeless. Initial interview pain scores (median, IQR) were 7; (6.25, 8), and 2nd interview pain scores were 8; (7, 9). 57 patients participated in both an initial and follow-up interview and no differences in pain scores were reported, (p=0.83). Forty three percent of patients (who were discharged home from the ED) during the initial interview, and 59% of patients during the 2nd interview reported being unable to manage their pain at home. On the second interview, 74% of patients reported they were currently experiencing sickle cell pain and 72% reported they were taking pain medication every day. Conclusion Many ED patients did not keep follow-up appointments and a smaller number of patients experienced barriers to filling analgesic prescriptions. Over half of patients reported continued pain in the severe range 30 days after the ED visit. Disclosures: Tanabe: NIH, and Mayday Fund: Research Funding. Hafner:Mayday Fund: Research Funding. Martinovich:Mayday Fund: Research Funding. Zvirbulis:Mayday Fund: Research Funding. Artz:Mayday Fund: Research Funding.

Describing Adherence to Recommended Preventative Care Behaviors Among Adults with Sickle Cell Disease

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 2058-2058
Author(s):  
Sophie Lanzkron ◽  
Carlton Haywood ◽  
Gladys T Onojobi ◽  
John J. Strouse ◽  
Mary Catherine Beach
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Care Provider ◽  
Research Funding ◽  
Patient Adherence ◽  
Preventative Care ◽  
Cell Disease ◽  
Ed Visits

Abstract Abstract 2058 Background: Healthcare professionals caring for patients with sickle cell disease (SCD) anxiously await the release in late 2012 of evidence-based guidelines for primary care physicians. These guidelines are anticipated to include a number of recommendations for health care strategies designed to improve outcomes for SCD patients. As these guidelines become widely disseminated, the evaluation of patient adherence to recommended preventative care will be an essential component of efforts to monitor the quality of health and health care for the SCD population. Unfortunately, there is a dearth of baseline information regarding current levels of SCD patient adherence to recommended therapies. The objective of our study was to describe current levels of self-reported adherence to recommended therapies among a large sample of adults with SCD. Methods: We used data collected as part of a large cohort study of sickle cell patient experiences with care to describe sickle cell patient's self-reported adherence to a number of currently recommended preventative care behaviors. We also examined the association of different levels of adherence with self-reported levels of acute emergency department (ED) and inpatient hospital utilization over the prior 12 months. Results: 292 individuals completed baseline study questionnaires and had completed chart abstractions. The average age of participants was 34.5 (95% CI 33.1–36.), 97% were black or African American and 54% were female. 70% had either SS or SB0thal (sickle cell anemia-SCA), 21% were SC and 9% had Sb+thal. Of the 252 respondents who provided info on income, 50% reported an annual income less than $30k/yr. Those with SCA were significantly younger than those with other genotypes (33 yrs v 37 yrs p=0.02). 91% of patients reported seeing a sickle provider every year, while 73% reported seeing a primary care provider once a year. 45% of patients reported seeing a dentist in the prior year, 58% of all patients reported seeing an eye doctor in the last year. However among the 24% of patients with documented retinopathy, only 65% had seen an eye doctor in the prior year. 82% of patients had received both an influenza vaccine in the prior year and a pneumococcal vaccine within 5 years. Those with low income were less likely to report seeing a SCD provider in the prior 12 months than those with higher incomes (87% v 94% p=0.049). A significant majority of patients (88%) reported high levels (i.e. a self-report of often/very often) of adherence to taking medications as prescribed. 79% reported high-levels of adherence to keeping their clinic appointments. 87% reported high-levels of adherence in following their doctor's directions. In bivariate analyses examining those preventative care behaviors with a significant impact on outcomes, we found that those patients reporting high-levels of adherence to their medical appointments reported fewer ED visits (p=0.015) and fewer inpatient hospitalizations (p=0.005) over the prior 12 months than those with lower levels of adherence. High self-reported levels of compliance with doctor's instructions was associated with fewer ED visits, but not fewer inpatient visits, over the same 12-month period. There was no bivariate correlation between seeing a sickle cell provider or primary care provider annually with outcomes, though this may be due to the overall high levels of adherence to these behaviors that we observed in our sample. In ordinal logistic regression analyses controlling for age, education, and poverty levels, high self-reported levels of compliance with doctor's instructions exhibited an independent association with lower levels of ED visits (OR = 0.44, 95%CI [0.21, 0.90]). Conclusions: We report relatively high levels of self-reported adherence to some, but not all, recommended preventative care behaviors among a sample of adults with SCD. The relatively low levels of adherence to dental and eye care recommendations should be noted as areas of focus for future interventions. Relationships between providers and SCD patients are notoriously rife with conflict. The association of high levels of compliance with doctor's instructions with lower levels of acute care utilization observed here suggests a need to identify the specific factors and mechanisms within provider-SCD patient relationships that successfully lead to improved clinical outcomes. Disclosures: Lanzkron: Hemaquest: Membership on an entity's Board of Directors or advisory committees; NHLBI: Research Funding. Haywood:NHLBI: Research Funding. Strouse:NHLBI: Research Funding. Beach:NHLBI, NIMH: Research Funding; Merck: Speakers Bureau.

scholarly journals Sickle-Cell Disease Patients' Attitudes Towards Their Treatment with Hydroxycarbamide

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 1013-1013
Author(s):  
Frédéric Galactéros ◽  
Ersi Voskaridou ◽  
Anoosha Habibi ◽  
Giovanna Cannas ◽  
Laure Joseph ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Board Of Directors ◽  
Sickle Cell ◽  
Research Funding ◽  
Fetal Hemoglobin ◽  
Treatment Discontinuation ◽  
Cell Disease ◽  
Advisory Committees

Hydroxyurea (HU) is approved in the EU and USA for prevention of vaso-occlusive crises (VOC) including acute chest syndromes (ACS) in patients over 2 years with sickle-cell disease (SCD). The major benefits of HU in SCD are directly related to its abilities to increase HbF, decrease sickling of red blood cells and hemolysis, leading to reduction of vaso-occlusive episodes, need for blood transfusions and consequently reduction of morbidity and mortality. Adherence to the treatment is paramount for effectiveness, but in spite of proven benefits, barriers to adherence persist.[1] ESCORT-HU study (European Sickle Cell Disease COhoRT - HydroxyUrea), is a multicentric, prospective, non-interventional European study designed to evaluate the safety profile of HU in real life. Patients were enrolled from January 2009 to June 2017 with a follow-up of up to 10 years. All interruptions and resumptions of HU treatment exceeding 15 days were recorded in this study. We hereby present the analysis of the group of patients who self-discontinued HU at least once during the study before informing their caregiver, with a view to identify potential barriers to long-term adherence. In total, 1906 patients were enrolled in ESCORT-HU from 63 centers in France, Germany, Greece and Italy. Of these, 619 patients (32%) stopped HU for over 15 days at least once, and around a third (11% of all patients) were due to patient's will. The mean duration of HU treatment before the first discontinuation was 4.8 ± 5.1 years. Data are summarized in table 1. Compared to the rest of the cohort, the 'treatment discontinuation' group had similar distribution by gender and indication for HU prescription, but a higher proportion of adults stopped HU more than 15 days. It is notable that the proportion of patients with SC genotype was higher in the 'treatment discontinuation' group (4.5% vs 1.7%). The patients in the 'treatment discontinuation' group had more frequent SCD symptoms before enrolment in the study (table 2). Hematological and clinical improvement compared to the baseline was observed in both groups. However, average mean Corpuscular Volume (MCV) and Fetal Hemoglobin percentage (HbF%) were lower and mean percentages of patients with SCD symptoms were higher over the three years of follow-up in the 'treatment discontinuation' group, suggesting that HU daily dose was insufficient (table 2). Sixty patients have no treatment resumption date reported which suggest a permanent interruption of their treatment. Among them 32% preferred to switch to another HU medicinal product and 13% have safety issue (table 3). Understanding and managing self-discontinuation of HU before taking medical advice is challenging for the physician. It is tempting to speculate that it may be due, at least in part, to lack of effectiveness potentially due to an underdosage of the treatment. Resistance to the treatment may also be suggested based on past literature data revealing a great variability in the response (determined by HbF%) to HU therapy. There is evidence that genetic modifiers affect individual response to HU.[2],[3] Finally, weariness from long-term use may also explain the patient's wish to discontinue HU. But treatment at optimal effective should be the primary goal of caregivers. [1]Smaldone A., Manwani D., Green NS, Greater number of perceived barriers to hydroxyurea associated with poorer health-related quality of life in youth with sickle cell disease, Pediatr Blood Cancer. 2019 [2] Steinberg MH, Voskaridou E, Kutlar A, Loukopoulos D, Koshy M, et al. (2003). Concordant fetal hemoglobin response to hydroxyurea in siblings with sickle cell disease. Am J Hematol 72: 121-126 [3] Ware RE, Despotovic JM, Mortier NA, Flanagan JM, He J, et al. (2011) Pharmacokinetics, pharmacodynamics, and pharmacogenetics of hydroxyurea treatment for children with sickle cell anemia. Blood 118: 4985-4991 Disclosures Galactéros: Addmedica: Membership on an entity's Board of Directors or advisory committees. Voskaridou:Celgene Corporation: Consultancy, Research Funding; Protagonist: Research Funding; Genesis: Consultancy, Research Funding; Acceleron: Consultancy, Research Funding; Addmedica: Membership on an entity's Board of Directors or advisory committees. Cannas:Addmedica: Membership on an entity's Board of Directors or advisory committees.

Comparing Patterns for Transitioning the Care of Young Adults with Sickle Cell Disease Versus Hemophilia: The Toronto Experience

Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 2072-2072 ◽  
Author(s):  
Ewurabena Simpson ◽  
Richard Ward ◽  
Melanie Kirby ◽  
Isaac Odame
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Sickle Cell Disease ◽  
Medical Care ◽  
Disease Severity ◽  
Sickle Cell ◽  
Cell Disease ◽  
Adult Care ◽  
Effective Transfer

Abstract Abstract 2072 Background: The Hospital for Sick Children (HSC) in Toronto, Canada cares for more than 700 children with sickle cell disease (SCD), which is the largest Canadian population of children with SCD. Since 2009, the SCD Program at HSC has partnered with adult hematologists within the Red Blood Cell Disorders program at Toronto General Hospital (TGH) to develop a coordinated strategy for transitioning the care of young adults with SCD. Hemophilia is a chronic hematological condition which, like SCD, has a spectrum of disease severity that requires multidisciplinary follow up. At HSC, we care for nearly 200 patients with hemophilia A and B and have a long-established partnership with adult hematologists, which has led to an effective transfer of patients with hemophilia into adult care. In Ontario, adult health providers are remunerated according to a fee-for-service billing schedule. In contrast, pediatric subspecialists are mainly salaried under an alternate funding plan. Until 2010, adult hematologists who provided medical care for individuals with hemophilia received a significantly higher pay scale than those who cared for individuals with SCD. This was changed in July 2010 so that adult hematologists receive commensurate remuneration for services rendered for both hemophilia- and SCD-related medical care. Objectives: 1. To compare the patterns for transitioning patients of varying disease severity within the pediatric and adult SCD and hemophilia programs in Toronto, Ontario. 2. To identify barriers and enablers that have influenced the transition of young adults with SCD within a universal health care system. Methods: Data for active, transitioned and inactive patients in the HSC and TGH clinical programs are maintained in a database at HSC. These patient numbers were gathered according to sickle cell genotype. Similar data were available for hemophilia patients who were transitioned from HSC to adult care. Chi-square analyses were used to compare the proportions of patients in the sickle cell and hemophilia programs that were transitioned between 2009 and 2011. Results: Conclusion: The HSC-TGH- partnership has significantly reduced the number of youth with SCD who continue to be followed at HSC or are lost to follow up. However, a significant number of young adults within the HSC SCD program still need to be transitioned to adult care. For the sustainable expansion of this transitional care strategy, health policymakers must collaborate with tertiary and community level health care providers to develop a coordinated and distributed strategy for the effective delivery of comprehensive health care services for young adults with SCD. Disclosures: No relevant conflicts of interest to declare.

Clinical Outcomes For Patients With Sickle Cell Disease: 24-Month Follow-Up In An Ongoing 3-Year, Prospective, Non-Interventional Registry Trial

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 988-988
Author(s):  
Matthew M Heeney ◽  
Brigitta U. Mueller ◽  
Brad Baltz ◽  
Patricia Adams-Graves ◽  
Elizabeth Yang ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Clinical Outcomes ◽  
Sickle Cell ◽  
Research Funding ◽  
Research Laboratory ◽  
Laboratory Research ◽  
Similar Proportion ◽  
Acute Chest Syndrome ◽  
Cell Disease

Abstract Introduction Patients (pts) with sickle cell disease (SCD) experience a heterogeneous clinical course, with a range of symptoms and sequelae. We describe clinical outcomes and treatment patterns from a prospective registry of pediatric and adult pts with SCD. Methods Pts ≥2 years old with HbSS, HbSC, or HbS/β-thalassemia were enrolled from 57 US centers and assessed every 6 months (mos) for up to 3 years. Differences between pediatric and adult pts at 24 mos follow-up are reported. (ClinicalTrials.gov NCT01220115). Results A total of 498 pts completed the baseline visit (74.1% HbSS disease, 15.3% HbSC, and 10.4% HbS/β-thalassemia) (Table 1 ). At baseline, the following conditions were more frequent in adults: avascular necrosis, gallbladder disease, leg ulcers, and pulmonary hypertension. Pediatric pts had more frequent asthma/reactive airway disease, dactylitis, and splenic sequestration. The nature of sickle-related events varied between adult and pediatric pts (Table 2 ). Prior to study, adults had higher frequencies of pain crises, strokes, and priapism, while pediatric pts had more frequent infections and acute chest syndrome (ACS)/pneumonia. On study, a similar proportion of pediatric and adult pts (56.4% overall) were hospitalized, most frequently due to pain, fever, and ACS/pneumonia; a greater proportion of pediatric pts were hospitalized due to fever (P<0.05). The percentage of pts who received a transfusion and/or chelation while on study was similar between adult and pediatric pts. Almost half of the pediatric and adult groups received hydroxyurea prior to and during the study. High rates of absenteeism were observed, with 51% of pediatric pts and 44.4% of adults missing 1 to 10 days of school or work in the year before study. Conclusions Despite advances in care, SCD is associated with significant morbidity that contributes to high rates of hospitalization and absenteeism in both pediatric and adult pts. Continued follow-up in this registry will provide additional information about disease patterns and pt management. Disclosures: Heeney: Novartis: Consultancy, Research Funding; Eli Lilly: Research Funding. Off Label Use: Hydroxurea is indicated to reduce the frequency of painful crises and to reduce the need for blood transfusions in adult patients with sickle cell anemia. It is not approved for use in children. Mueller:Novartis: Research Funding. Adams-Graves:Novartis: Consultancy, Speakers Bureau. Paley:Novartis: Employment. Esposito:Novartis: Employment. Katie:Novartis: Employment. Vichinsky:Novartis: Consultancy, Research Funding; ApoPharma: Consultancy, Research Funding; ARUP: Research Funding, Research Laboratory, Research Laboratory Other.

scholarly journals Outpatient Pain Predicts Subsequent One-Year Acute Health Care Utilization Among Adults With Sickle Cell Disease

2014 ◽  
Vol 48 (1) ◽  
pp. 65-74 ◽  
Author(s):  
Miriam O. Ezenwa ◽  
Robert E. Molokie ◽  
Zaijie Jim Wang ◽  
Yingwei Yao ◽  
Marie L. Suarez ◽  
...  
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Health Care Utilization ◽  
Sickle Cell ◽  
Care Utilization ◽  
Cell Disease ◽  
Acute Health Care ◽  
One Year

scholarly journals Drepadom - Home Care Services and Hospitalizations for Sickle Cell Disease Patients during the Covid-19 Pandemic

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 12-12
Author(s):  
Gonzalo De Luna ◽  
Nicolas Lemonier ◽  
Alexis Aidan ◽  
Lea Bontemps ◽  
Manuel Hautefaye ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Research Funding ◽  
Chronically Ill ◽  
Full Recovery ◽  
Acute Chest Syndrome ◽  
Cell Disease ◽  
Medical Decisions ◽  
Daily Monitoring

INTRODUCTION Besides many problematics the Covid-19 pandemic has triggered, one issue remains the care of chronically ill patients. Regarding sickle cell disease (SCD), patients often present co-morbidities that could predispose them to poor outcome if they get infected. Vaso-occlusive crisis (VOC), a characteristic manifestation of SCD, is the first cause of patients 'hospitalizations. Here, we describe how our sickle cell referral center has managed outpatient care, with the constant preoccupation of minimizing risks for our patients and avoid them unnecessary trips to heavily burdened hospital settings. DESCRIPTION OF SETTING With the outbreak of Covid-19, our primary obsession was to provide continuous care for our patients, while ensuring their safety. All appointments were canceled when possible and patients were instructed to comply with the national lock down procedures. A hotline and helpdesk were setup as the first stage of our structure. When patients described symptoms of VOC and/or light breathing difficulties, they were enlisted for daily monitoring. This stage two consisted of calling patients daily with a specific set of questions, regarding management and improvement or deterioration of their symptoms. A dedicated team of dentists, who all volunteered and received specific training, managed both stage 1 and 2, along with nurses. SCD specialists supervised these two stages for medical decisions. All symptoms were recorded and reported. If symptoms disappeared, the patient's name was discarded from the list. If there was a worsening or no improvement of the patient's condition, he was moved to stage three by the SCD expert, with the deployment of homecare service. A whole network was then setup, with the delivery of oxygen supply at the patient's house, dispatch of a medical prescription to a neighboring pharmacy and daily visits from homecare service providers. Both opioids and parenteral treatments were prescribed and monitoring was performed daily (blood pressure, temperature, respiratory rate, pain, etc...). On the first visit, a blood sample was sent to a laboratory, to allow calculation of the PRESEV score (Bartolucci et al., 2016). This score, established by team members and colleagues, assesses the risk of acute chest syndrome (ACS). Moreover, it has just been validated by a multicenter international study (PRESEV II - under writing process). In case the PRESEV score was ≤ 5, home hospitalization was pursued. In case this score was ≥11, the patient was sent to hospital for constant monitoring and full comprehensive care. For low and intermediate scores, the patient was referred to hospital for any aggravation. The helpdesk was in constant interaction with nurses and providers of homecare services and status and evolution of the patient's global condition was reported daily for medical decisions. In addition, patients with home hospitalization care were called daily by the helpdesk, to ensure proper care and satisfaction. When home hospitalization was over, the patient automatically came back to stage two for a daily follow-up until full recovery. Early discharged patients could either re-integrate stage 2 or 3 for daily monitoring until full recovery. Out of the 305 patients included in this system, with a total of 2068 calls between March 23rd and May 29th. Seventy five were included for home hospitalization. Mean age was 36 years old [±9], sex ratio was 45/30 (female/male), mean homecare follow up was 6 days (±3), 16 patients also had Covid-19. Thirteen patients (17.3%) were hospitalized: one for an acute chest syndrome, two for a Covid-19 infection and nine for VOC management. Only one patient was in ICU due to a salmonella septicemia. No death was reported. PERSPECTIVES The Covid-19 pandemic has highlighted the need for profound reshaping of healthcare systems worldwide. In this particular context, the structure we have installed, DREPADOM, allowed follow up and monitoring of two profiles of patients: at-risk population of SCD patients and Covid-19 positive SCD patients. With the ongoing situation, our delocalized hospitalization system has proven interesting enough to enter a new phase: DREPADOM was selected as part of a public call for tenders, for financial support to make the structure permanent (DREPADOM - APRES). Disclosures Habibi: Pfizer: Consultancy; Bluebird: Consultancy; Addmedica: Consultancy; Novartis: Consultancy. Bartolucci:GBT: Consultancy; Roche: Consultancy; Emmaus: Consultancy; Innovhem: Other; Addmedica: Research Funding; HEMANEXT: Consultancy; Novartis: Consultancy; ADDMEDICA: Consultancy; Fabre Foundation: Research Funding; Novartis: Research Funding; Bluebird: Consultancy; AGIOS: Consultancy; Bluebird: Research Funding.

Sickle cell disease pain: II. Predicting health care use and activity level at 9-month follow-up.

1992 ◽  
Vol 60 (2) ◽  
pp. 267-273 ◽  
Author(s):  
Karen M. Gil ◽  
Mary R. Abrams ◽  
George Phillips ◽  
David A. Williams
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Use ◽  
Activity Level ◽  
Cell Disease
Sign in / Sign up

Export Citation Format

Share Document