Attitudes Among Healthcare Providers and Patients Diagnosed With Sickle Cell Disease

2014 ◽  
Vol 18 (6) ◽  
pp. 675-680 ◽  
Author(s):  
Stefani O'Connor ◽  
Deborah Hanes ◽  
Amy Lindsey ◽  
Mary Weiss ◽  
Lorie Petty ◽  
...  
Blood ◽  
2007 ◽  
Vol 110 (11) ◽  
pp. 3804-3804
Author(s):  
Raymond U. Osarogiagbon ◽  
Laura M. McHugh ◽  
Lori E. Kronish ◽  
Elisabeth A. Chismark

Abstract Sickle cell disease is typified by dramatic acute painful episodes, which consume the majority of patients’ and healthcare providers’ attention. However, the cumulative damage to vital organs that occurs in this disease is often the determinant of early death. The kidneys are a major target organ in sickle cell disease and renal failure is a highly morbid event. It is also strongly associated with early death. Glomerular hyperfiltration is often the earliest sign of renal injury. This is followed by return to apparently normal filtration rates, then successively lower rates, culminating in end-stage renal disease. Microalbuminuria follows hyperfiltration and progresses to frank proteinuria. We evaluated the prevalence of renal dysfunction in a cohort of patients with sickle cell disease managed at the University of Tennessee Cancer Institute’s adult sickle cell program. At entry into the program, patients underwent a routine battery of tests, including 24 hour urine collection for measurement of creatinine clearance and urine protein. Our findings are summarized in the table below. By the age of 25 years, almost 80% of patients with sickle cell disease showed significant abnormality of glomerular filtration and 40% had significant proteinuria. This worsens with age. By a median of 37 years, 2 in 3 patients have developed significant proteinuria and hypofiltration has become the predominant pattern of glomerular filtration abnormality. Since renal injury is reversible in the early stages, more emphasis needs to be placed on aggressive early screening, surveillance and intervention. Intervention at the stage of hyperfiltration and microalbuminuria is easier and much more likely to be successful. Patients and their healthcare providers need to be educated on the high prevalence of renal damage. Efforts at education, screening, surveillance and, where necessary, treatment should begin well before adolescence.


2016 ◽  
Vol 9 (2) ◽  
pp. 109-119 ◽  
Author(s):  
Miriam O Ezenwa ◽  
Crystal Patil ◽  
Kevin Shi ◽  
Robert E Molokie

Purpose – The purpose of this paper is to detail experiences that sickle cell disease (SCD) patients associate with healthcare justice and injustice in pain control. Design/methodology/approach – A content analysis study of open-ended comments written by 31 participants who completed a 20-item healthcare injustice questionnaire-revised twice: once in reference to experiences with doctors and once in reference to experiences with nurses. Findings – Participants’ mean age was 33±10 years; most were African-Americans and women. Themes showed: the four domains of healthcare justice were represented in patients’ comments; examples of justice and injustice were provided; specific incidents and interactions with healthcare providers were memorable to patients; and setting was a factor important to healthcare experiences because expectations about services vary by setting. Research limitations/implications – Patients were self-selected. Future work will include qualitative interviews and focus groups to uncover more details about how patients experience healthcare injustice. Practical implications – Additional training is needed for SCD providers and about proper management of sickle cell pain; educational modules are also needed that address areas of healthcare injustice by patients. Originality/value – The authors are the first to report how patients define healthcare justice and injustice. Specific details about memorable SCD patient-provider interactions and pain control are described.


Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 5577-5577 ◽  
Author(s):  
Carlton Haywood ◽  
Sophie Lanzkron ◽  
C. Patrick Carroll ◽  
John J. Strouse ◽  
Shawn M Bediako ◽  
...  

Abstract Introduction Perceived discrimination due to race or ethnicity has been associated with a greater burden of pain among minority groups.  Patients with sickle cell disease (SCD), who in the U.S. are comprised primarily of individuals from racial and ethnic minority groups, are known to experience behaviors from others that may be construed as discriminatory.  Nevertheless, the association of these problematic interpersonal experiences with the burden of chronic pain in SCD is unknown. Methods We conducted a cross-sectional analysis of data collected at baseline of the Improving Patient Outcomes with Respect and Trust Study (IMPORT), which is a federally funded prospective cohort study of SCD patient (age 15+) experiences of care (n = 291).  We sought to examine the association between patient perceptions of discrimination and their reports of chronic SCD pain.  Perceived discrimination from healthcare providers thought to be due to the patient's race/ethnicity (i.e., race-based), or status as having SCD (i.e, disease-based) was measured using subscales adapted from the Interpersonal Processes of Care Survey.  Using descriptive, bivariate, and multivariable analytic techniques, discrimination scores were examined for their association with self-reported chronic pain both unadjusted, and adjusted for the following potential confounders: patient age, sex, type of SCD, self-reported ED utilization for vaso-occlusive crisis, depression symptoms, the patient's perceived severity of their SCD, and the presence or absence of avascular necrosis. Results Patients in the cohort reported higher levels of race-based discrimination compared to other reports of African Americans using the same instrument.  The cohort reported an even higher level of perceived disease-based discrimination than race-based discrimination.  Race-based discrimination exhibited significant, positive associations with disease-based discrimination (r = 0.51, p<0.001), age, and depressive symptoms.  Disease-based discrimination exhibited significant, positive associations with depressive symptoms, ED utilization (see Figure 1), and perceived disease severity.  Fifty-four percent (54%) of the respondents reported having daily chronic SCD pain.  Perceived disease-based, but not race-based, discrimination from healthcare providers was independently associated with a greater likelihood of reporting daily chronic SCD pain (adjusted OR = 1.34, 95%CI [1.01, 1.78]) after adjustment for all potential confounders under study. Conclusions While perceptions of race and disease-based discrimination were correlated with each other, they exhibited different relationships with clinical factors like ED utilization and chronic pain.  Perceived disease-based, but not race-based, discrimination was found to be associated with a greater burden of chronic pain among patients with SCD independent of potential confounders like ED utilization. While the true causal directionality of this relationship is currently unclear, our findings do support greater use of a biopsychosocial approach to mitigating the burden of SCD pain.  Efforts to identify the various mechanisms through which perceived discrimination is associated with the burden of pain are essential in order to develop targeted interventions that could improve the pain experience of persons with SCD. * Test for trend significant at p <0.001 Disclosures: Haywood: NIH: Research Funding. Lanzkron:GlycoMimetics, Inc: Research Funding; NIH: Research Funding. Strouse:NIH: Research Funding; Doris Duke Charitable Foundation: Research Funding; Masimo Corporation: Membership on an entity’s Board of Directors or advisory committees, Research Funding. Bediako:NIH: Research Funding. Haythornthwaite:NIH: Research Funding. Beach:NIH: Research Funding.


2019 ◽  
Vol 76 (23) ◽  
pp. 1965-1971 ◽  
Author(s):  
Stefanie M Zassman ◽  
Francis J Zamora ◽  
John D Roberts

Abstract Purpose A novel strategy for management of acute pain associated with sickle cell disease (SCD), referred to as the oral tier approach, is described. Summary SCD is an inherited blood disorder characterized by episodic acute pain known as vaso-occlusive crisis (VOC), which is the most common reason for emergency department visits and hospital admissions in patients with SCD; these patients are often treated with parenteral opioids on admission and then transitioned to oral opioids prior to discharge. In this report, experience with use of the oral tier approach in 3 patients with SCD hospitalized for management of VOC is reported. As per usual practice, acute pain was initially managed with parenteral opioids via patient-controlled analgesia (PCA). Once pain control was established, an oral tier was added. The oral tier consisted of 3 orders. The first order was for an oral opioid, to be administered every 3 hours on a scheduled basis; however, the patient could refuse 1 or more of these scheduled doses. Two additional orders specified that the patients could receive additional oral opioids in incremental doses for moderate (grade 4–7) or severe (grade 8–10) pain if appropriate. To facilitate transition to an oral regimen with which the patients might be discharged, they were encouraged to use oral opioids in preference to parenteral opioids. Opioid usage and average daily pain scores for the 3 patients are reported. Conclusion Healthcare providers can use the oral tier approach to facilitate rapid inpatient conversion from i.v. PCA to oral opioids while providing adequate pain control in patients with SCD who develop VOC.


2019 ◽  
Vol 11 (1) ◽  
Author(s):  
Assem A. Elghazaly ◽  
Adel A. Aljatham ◽  
Abdulaziz M. Khan ◽  
Rasha M. Elneil ◽  
S. Zubair S. Jafar ◽  
...  

Sickle cell disease (SCD) is a group of inherited disorders of hemoglobin synthesis. It is prevalent in different parts of the world, including the Kingdom of Saudi Arabia. The disease is associated with multiple acute and chronic life-threatening complications. Hydroxyurea (HU) is an effective preventive medication; its use has resulted in decreased morbidity and mortality. However, practice variability, including underutilization of HU, has been reported. No local publication has addressed this issue. The aim of this work is to consider the pattern of HU prescription for SCD patients. This is a retrospective study included patients seen in the outpatient clinics in a central hospital. Cases of medications unavailability or patient refusal to take the drug were not included. A total of 152 patients were included, of them 118 were prescribed HU and 34 were not. In 133 (87.5%) patients, the physician’s decision was appropriate. Inappropriate decisions including both under prescription and, to much lesser extent, over utilization had been demonstrated in 19 (12.5%) cases. Impact of raising the healthcare providers’ awareness and improving compliance with the updated SCD management recommendations and guidelines deserve further studying. In our local experience, although the majority of HU prescriptions were appropriate, both under prescription and to a lesser extent, overutilization was demonstrated.


2019 ◽  
Vol 2019 ◽  
pp. 1-7 ◽  
Author(s):  
Sagad Omer Obeid Mohamed ◽  
Esraa Mohamed Osman Mohamed ◽  
Afnan Abugundul Ahmed Osman ◽  
Fatima Abdelhakam Abdellatif MohamedElmugadam ◽  
Gehad Abdelmonem Abdalla Ibrahim

Background. Parvovirus B19 (B19 V) infection had been reported to be more frequent with serious clinical outcomes in patients with sickle cell disease (SCD) than in the general population. There is a wide variation in data among the existing literature regarding the seroprevalence of B19 V in patients with SCD. These data require further summary and analyses for better accuracy. This systematic review and meta-analysis was done to estimate the seroprevalence of B19 V in patients with SCD. Methods. This study was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The databases of MEDLINE/PubMed, Virtual Health Library (VHL), ScienceDirect, Google Scholar, and OpenGrey were used for the systematic search. The random-effects model was used to estimate the pooled prevalence with the corresponding 95% confidence interval (CI) using OpenMeta Analyst software. Publication bias was estimated based on Begg’s test, Egger’s test, and examination of the funnel plot. Subgroup analyses and metaregression were used to explore the moderators of heterogeneity between studies. Results. A total of 18 studies including 2890 patients were analyzed. The overall IgG seroprevalence of B19 V infection among patients with SCD was found to be 48.8% (95% CI 39.5%–58.0%). Evidence of publication bias was not detected. Evidence of acute viral infection detected by positive IgM antibodies among the screened SCD patients was found in 8.30% (95% CI 5.20%–11.4%) of them. There was a statistically significant association between seroprevalence of B19 V and geographical areas. Conclusion. There was a high prevalence of B19 V in patients with SCD. Healthcare providers need to be aware of the magnitude of B19 V infection in patients with SCD to ensure effective management. This review could provide a comprehensive view of B19 V prevalence in this susceptible population.


2019 ◽  
Vol 9 (8) ◽  
pp. 182
Author(s):  
Samar Abdo ◽  
Khawla Q. Nuseir ◽  
Ahmad A. Altarifi ◽  
Moussa Barqawi ◽  
Nehad M. Ayoub ◽  
...  

Management of sickle cell pain in adolescent and pediatric patients is inadequate, and the employment of proper management guidelines and practices are highly variable among different regions and populations. APPT, the multidimensional adolescent pediatric pain tool, promotes optimal pain management and introduces best practical guidelines for pain management. The goal of this study is to assess pain and pain management among young patients diagnosed with sickle cell disease (SCD) by introducing the APPT as a tool for pain management, and analyze factors contributing to pain management. Information relevant to demographic data, SCD characteristics, APPT assessment, and satisfaction of patients regarding pain management were collected using a structured questionnaire. Results showed that SCD is highly associated with gender (p = 0.022), consanguinity (p = 0.012), and number of surgeries (p = 0.013). Most patients (58.9%) indicated the involvement of more than six body areas affected during pain crisis. Severe pain was described by more than half the patients (55.6%), while moderate pain was reported by 31.1%. Most patients described their pain by sensory, affective, and temporal words. The number of painful areas, pain intensity, and use of descriptive pain words was correlated and interpreted by age, BMI, school absence, and number of surgeries. Results of this study could provide guidance to healthcare providers to improve current practices for SCD pain management in order to improve health outcomes and patients’ satisfaction.


2006 ◽  
Vol 22 (6) ◽  
pp. 330-335 ◽  
Author(s):  
Sara Day ◽  
Elisabeth Chismark

Sickle cell disease (SCD) affects over 30,000 students in the United States. Central nervous system complications are widespread among students with SCD and include stroke, silent cerebral infarction, and cognitive impairment. The effects of these complications may lead to academic failure, limited career options, and for some, total disability. Despite studies describing the significant academic and cognitive impact of sickle cell disease, reports describing interventions are limited. There is a lack of awareness among educators of the academic risks associated with sickle cell disease and a lack of appropriate resource allocation. The school nurse, as community health advocate, will be called upon to bridge the gap among healthcare providers, parents, students, and educators. This article provides a review of both recent and landmark studies describing the cognitive and academic impact of sickle cell disease and discusses the role of the school nurse as an advocate, liaison, and educator.


2019 ◽  
Vol 41 (1) ◽  
pp. 62-68 ◽  
Author(s):  
Katy Karoline Santos Diniz ◽  
Adriana Silvina Pagano ◽  
Ana Paula Pinheiro Chagas Fernandes ◽  
Ilka Afonso Reis ◽  
Leonardo Gonçalves Pinheiro Júnior ◽  
...  

Sign in / Sign up

Export Citation Format

Share Document