scholarly journals Attitudes of Primary Care Physicians Toward Sickle Cell Disease Care, Guidelines, and Comanaging Hydroxyurea With a Specialist

2016 ◽  
Vol 8 (1) ◽  
pp. 37-40 ◽  
Author(s):  
Joseph Lunyera ◽  
Charles Jonassaint ◽  
Jude Jonassaint ◽  
Nirmish Shah
Keyword(s):  
Primary Care ◽  
North Carolina ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Primary Care Physicians ◽  
Mobile Apps ◽  
Multidisciplinary Care ◽  
Cell Disease ◽  
Care Guidelines ◽  
Complex Chronic Disease

Background: Sickle cell disease (SCD) is a complex chronic disease requiring multidisciplinary care that involves primary care physicians (PCPs) working with a hematologist or SCD specialists. However, PCPs often lack access to SCD specialists and are unaware of SCD guidelines or efficacious treatment. Methods: We partnered with Community Care of North Carolina (CCNC) to identify assigned PCPs for SCD patients with Medicaid across North Carolina. CCNC network administrators distributed a web-based questionnaire for completion. The questionnaire involved 12 self-reported items on a yes-no or a 1 to 5 Likert-type scale that assessed PCP attitudes toward SCD care, awareness of recent guidelines, and comanaging hydroxyurea. Results: Of the 53 PCPs who completed the electronic survey, 73% felt they were comfortable with the number of SCD patients in their practice. Most PCPs reported having infrequent communications with an SCD specialist (67%) and most were also not aware of the 2014 SCD guidelines (66%). Many reported that they would frequently use the new SCD guidelines if provided to them (76%). Furthermore, 51% of PCPs expressed comfort with using mobile apps to access SCD guidelines and provided email contact to receive further information. The majority also reported being comfortable comanaging hydroxyurea with an SCD specialist (65%). Conclusion: Few PCPs in North Carolina were aware of the new SCD guidelines or had regular communication with an SCD specialist. The majority of PCPs, however, demonstrated a favorable attitude toward receiving the SCD guidelines and comanaging hydroxyurea with a specialist. In response to this gap in care, we have developed a mobile-based SCD toolbox specifically for PCPs to provide guidelines, algorithms, and a method to communicate with local SCD specialists. With the interest in receiving these guidelines, we are confident the toolbox will provide an easy to use platform to assist PCPs to utilize the SCD guidelines.

scholarly journals Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina

2021 ◽  
Vol 12 ◽  
pp. 215013272110490
Author(s):  
Stephanie O. Ibemere ◽  
Paula Tanabe ◽  
Emily Bonnabeau ◽  
Gary Rains ◽  
Kern Eason ◽  
...  
Keyword(s):  
Primary Care ◽  
North Carolina ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Primary Care Providers ◽  
Care Providers ◽  
Cell Disease ◽  
Convenience Sample ◽  
Health Maintenance ◽  
Blood Disorder

Background Sickle cell disease (SCD) is a complex chronic blood disorder characterized by severe disease complications ideally managed by both hematologists and primary care providers (PCP’s). PCP’s report knowledge gaps and discomfort with SCD management. Our team developed and a decision support tool for SCD management (SCD Toolbox) based on the National Heart, Lung, and Blood Institute’s SCD guidelines. We surveyed PCPs in North Carolina (NC) prior to formal dissemination to determine current co-management practices, assess toolbox acceptability, use, format preferences, and understand which algorithms would be most helpful. Method A 23-item baseline needs assessment survey was disseminated to PCPs throughout NC. Results A total of 63 medical providers responded to the survey and of these respondents, 64% reported caring for 1 to 10 patients with SCD. Only 39% of PCPs reported regular communication with an SCD specialist. Providers reported the highest level of awareness of the pediatric and adult health maintenance tools (41% and 39% respectively) and highest use of the pediatric (26%) and adult (28%) health maintenance tools. Respondents also expressed a desire to have access to multiple toolbox formats (37%) (website, mobile app and/or paper). Limitations The use of a convenience sample and low survey response are study limitations which hinder generalizability. Conclusions PCPs rarely co-managed with a specialist, had low awareness and use of SCD toolbox, and requested multiple formats for the toolbox.

scholarly journals Outpatient Healthcare Utilization and Rates of Co-Management Among Medicaid Patients with Sickle Cell Disease in North Carolina

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4725-4725
Author(s):  
Nirmish Shah ◽  
Christian Douglas ◽  
Emily Bonnabeau ◽  
Nancy Crego ◽  
Marian Earls ◽  
...  
Keyword(s):  
Primary Care ◽  
North Carolina ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Nurse Practitioner ◽  
Research Funding ◽  
Outpatient Visit ◽  
Cell Disease ◽  
Provider Type ◽  
Outpatient Visits

Abstract Introduction: Sickle cell disease (SCD) is a complex disease for which pain is the hallmark, often results in end-organ failure, and is associated with early death. Primary care providers (PCP's), hematologists, and co-management between PCP's and hematologists are necessary to facilitate optimal patient outcomes. Due to the wide array of sickle cell related complications, multiple specialists are required to manage patients with SCD. We report outpatient visits per provider specialty type and co-management, for persons with SCD enrolled in Medicaid during a 12-month period in North Carolina. Methods: Medicaid claims data from North Carolina for patients with a diagnosis of SCD (ICD 9 CM codes: 282.6x, ICD 10 CM codes: D57.0x, D57.1, D57.2x, D57.4x, D57.8x) and at least one month of enrollment in Medicaid between March 1, 2016 and February 28, 2017 were examined. Outpatient visits were identified by the current procedural terminology (CPT) code listed on the claim. Each outpatient visit was then categorized into a specialty using the descriptions from the Medicare Provider/Supplier to Healthcare Provider Taxonomy document that matched the billing provider code and the rendering provider code listed on the claim. If the billing provider or rendering provider code was either missing or did not link to a description that was informative, then those visits were placed in the "NULL" category to signify they were unidentifiable. The "Other Specialty" category included those specialty visits that were either not historically associated with SCD care (such as infectious disease) or occurred ≤1% of all specialty visits (such as dermatology or rheumatology), and excluding SCD specialists, general nurse practitioner and physician assistant visits. Additionally, each outpatient visit type was reviewed by the team and categorized into three broad categories: PCP (including pediatrician), hematologist (including pediatric hematologists), and non-hematology specialty type. An acute care specialty visit (CPT code) occurred outside the emergency department and was defined as a non-PCP and non-hematologist visit that we were unable to further determine specialty type. A minimum of one PCP and one hematologist visit/patient during the study period was required to meet the definition of co-management. A fourth category of provider type (nurse practitioner or physician's assistant) was added whenever we were unable to determine if the NP or PA provided primary care, hematology, or other specialty care. These visits were not included in calculation of co-management. Descriptive statistics were used to report findings. Results: 2850 patients [58% female, mean (SD) age - 23 (16)] were included in the cohort. Eighty-six percent of the sample was enrolled in Medicaid for a minimum of 10 months. Table 1 reports the number of visits, and visits/patient for each category of provider type. Patients had 2.96 (SD 3.76) PCP visits per patient and only 1.28 (SD 2.49) hematology visits per patient. Although there were a large number of PCP and hematology visits overall, only 34% of the cohort met the definition for being co-managed. Table 2 reports the wide array of non-hematology specialty visits by type. On average, patients had nearly the same number of non-hematology specialty provider visits than PCP visits. Conclusions: Persons with SCD in NC had low rates of co-management and used outpatient services from a wide array of specialty providers. Importantly, hematologists had lower than expected outpatient visits and patients had a significant number of acute care outpatient visits. Navigating the large number of providers and specialists requires careful evaluation of our current model of care for treating SCD. Further efforts are required to increase co-management among complex chronic diseases such as SCD. Disclosures Shah: Novartis: Research Funding, Speakers Bureau. Tanabe:NIH and AHRQ: Research Funding; Alliant Health: Consultancy; Duke University: Employment.

scholarly journals Dissemination of Evidence-Based Recommendations for Sickle Cell Disease to Primary Care and Emergency Department Providers in North Carolina: A Cost Benefit Analysis

2021 ◽  
Vol 8 (1) ◽  
pp. 18-28
Author(s):  
Paula Tanabe ◽  
Audrey L. Blewer ◽  
Emily Bonnabeau ◽  
Hayden B. Bosworth ◽  
Denise H. Clayton ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Emergency Department ◽  
North Carolina ◽  
Sickle Cell Disease ◽  
Cost Benefit ◽  
Care Utilization ◽  
Evidence Based ◽  
Cell Disease ◽  
Ed Visits

Background: Sickle cell disease (SCD) is a genetic condition affecting primarily individuals of African descent, who happen to be disproportionately impacted by poverty and who lack access to health care. Individuals with SCD are at high likelihood of high acute care utilization and chronic pain episodes. The multiple complications seen in SCD contribute to significant morbidity and premature mortality, as well as substantial costs to the healthcare system. Objectives: SCD is a complex chronic disease resulting in the need for primary, specialty and emergency care. Many providers do not feel prepared to care for individuals with SCD, despite the existence of evidence-based guidelines. We report the development of a SCD toolbox and the dissemination process to primary care and emergency department (ED) providers in North Carolina (NC). We report the effect of this dissemination on health-care utilization, cost of care, and overall cost-benefit. Methods: The SCD toolbox was adapted from the National Heart, Lung, and Blood Institute recommendations. Toolbox training was provided to quality improvement specialists who then disseminated the toolbox to primary care providers (PCPs) affiliated with the only NC managed care coordination system and ED providers. Tools were made available in paper, online, and in app formats to participating managed care network practices (n=1800). Medicaid claims data were analyzed for total costs and benefits of the toolbox dissemination for a 24-month pre- and 18-month post-intervention period. Results: There was no statistically significant shift in the number of outpatient specialty visits, ED visits or hospitalizations. There was a small decrease in the number of PCP visits in the post-implementation period. The dissemination resulted in a net cost-savings of $361 414 ($14.03 per-enrollee per-month on average). However, the estimated financial benefit associated with the dissemination of the SCD toolbox was not statistically significant. Conclusions: Although we did not find the expected shift to increased PCP visits and decreased ED visits and hospitalizations, there were many lessons learned.

scholarly journals Effectiveness of earlier antenatal screening for sickle cell disease and thalassaemia in primary care: cluster randomised trial

BMJ ◽  
2010 ◽  
Vol 341 (oct05 2) ◽  
pp. c5132-c5132 ◽  
Author(s):  
E. Dormandy ◽  
M. Gulliford ◽  
S. Bryan ◽  
T. E. Roberts ◽  
M. Calnan ◽  
...  
Keyword(s):  
Primary Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Randomised Trial ◽  
Cluster Randomised Trial ◽  
Antenatal Screening ◽  
Cell Disease ◽  
Cluster Randomised

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.

Primary Care Providers’ Comfort Levels in Caring for Patients with Sickle Cell Disease

2015 ◽  
Vol 108 (9) ◽  
pp. 531-536 ◽  
Author(s):  
Lauren N. Whiteman ◽  
Carlton Haywood ◽  
Sophie Lanzkron ◽  
John J. Strouse ◽  
Leonard Feldman ◽  
...  
Keyword(s):  
Primary Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Primary Care Providers ◽  
Care Providers ◽  
Cell Disease ◽  
Comfort Levels

Sickle Cell Disease and Pulpal Necrosis: A Review of the Literature for the Primary Care Dentist

2014 ◽  
Vol 3 (1) ◽  
pp. 76-79 ◽  
Author(s):  
M S Basati
Keyword(s):  
Primary Care ◽  
Sickle Cell Disease ◽  
Literature Review ◽  
Sickle Cell ◽  
Alveolar Bone ◽  
Cell Disease ◽  
General Dental Practitioner ◽  
Patient Reported ◽  
Primary Care Practitioners ◽  
The Relationship

A case of difficult diagnosis of a patient with sickle cell disease and tooth pain fuelled a literature review by a primary care general dental practitioner. A literature search was conducted to review the relationship between sickle cell disease and pulpal necrosis. The results indicated statistically significant associations of sickle cell disease and tooth pain without any carious or traumatic pathology. It is important for the primary care dentist to be aware of the relationship between sickle cell disease and pulpal necrosis to prevent misdiagnosis and consequently mistreatment. Background A female patient, 49, of African-Carribean descent with sickle cell disease presented to the dental clinic with chronic pain. The tooth involved was an upper right first premolar free of caries and trauma. On a periapical radiograph the surrounding alveolar bone had large areas of ‘black banding’. The patient reported that large ‘black bands’ had also been seen on radiographs of her hip and shoulder and eventually the orthopaedic physician had come to the diagnosis of bone necrosis secondary to the patient's sickle cell disease. With this information, a provisional diagnosis of pulpal necrosis secondary to avascular necrosis was made, once all other possible diagnoses had been excluded. The premolar was extirpated and at a review appointment there was complete resolution of symptoms. The author performed a literature review because as a primary care dentist he had never come across this diagnosis before and noted that other primary care practitioners might be interested to learn about it.

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