ABSTRACT
We aimed to determine the minimal clinically important difference (MCID) in pain severity and agreement between the visual analog scale (VAS) and the verbal numeric rating scale (NRS) in people with sickle cell disease (SCD) experiencing an acute vaso-occlusive episode in the emergency department. In the COMPARE-VOE trial (NCT03933397), participants were administered the VAS (0-100), NRS (0-100), and descriptor scale (a lot better, a little better, same, a little worse, much worse) every 30 minutes while in the emergency department. We analyzed data from 100 participants (mean age 30.2 years; 61% female). We calculated the mean differences and 95% confidence intervals (CIs) between current and preceding scores when the participant reported a little worse or a little better pain for each scale (255 VAS and 150 NRS observations) to assess the MCID for the VAS and NRS. Pearson correlation and the Bland-Altman method were used to assess the agreement among 411 paired VAS and NRS observations. Our results indicated that the MCID for the VAS was 8.77 mm (95% CI: 7.43 mm, 10.83 mm) and the NRS was 8.29 (95% CI: 6.47, 11.60). The VAS and NRS scales had a correlation of .88 (P < .001). The Bland-Altman method indicated a mean difference of -4.6 ± 1.96 and the 95% limits of agreement ranged from 20 to -29. Despite high correlation, there was considerable variability of agreement between the VAS and NRS scales, indicating that these scales are not interchangeable to assess pain during a vaso-occlusive event. PERSPECTIVE: The MCID in pain severity for individuals with a SCD vaso-occlusive episode using the VAS (8.77 mm) is lower than previously reported, and the MCID for NRS was 8.29. The agreement between the VAS and NRS was determined and the scales cannot be used interchangeably to measure SCD pain intensity.
ABSTRACT
Language-based disparities negatively impact patient outcomes. Spanish-speaking Latino patients with traumatic brain injury (TBI) transitioning home from acute hospital care and their families have poor TBI-related outcomes; further, they have significant difficulties navigating the healthcare system due to care fragmentation and limited provider support. These challenges are exacerbated by language barriers. There are disproportionately fewer bilingual providers and interpreters in the U.S. healthcare system for patients with TBI for whom English is not their primary language. Although Spanish-speaking Latino patients with TBI and their families communicate with healthcare providers using interpreters on a regular basis, limited research has explored the healthcare delivery perspective. The purpose of this study was to understand the perspectives of healthcare providers and interpreters regarding their experience caring for or supporting Spanish-speaking Latino patients with TBI and their families during the transition home from acute hospital care. This qualitative descriptive study included 10 bilingual (English and Spanish-speaking) participants: 7 interdisciplinary providers and 3 interpreters; findings were analyzed using rapid qualitative analysis to inform intervention adaptation. Four themes were identified: 1) language misalignment decreases health literacy and increases length of stay; 2) TBI-related cognitive impairments, coupled with language differences, make communication challenging; 3) unique social contributors to health directly decrease health equity; and 4) recommendations to improve access and justice in transitional care. There are multiple opportunities to improve transitional care support provided to Spanish-speaking Latino patients with TBI and their families in a manner that is not currently being addressed in research or in practice.
ABSTRACT
BACKGROUND: Pregnancy presents a critical period for any maternal and child health intervention that may impact the health of the newborn. With low antenatal care attendance by pregnant women in health facilities in Nigeria, community-based programs could enable increased reach for health education about sickle cell disease (SCD) and newborn screening (NBS) among pregnant women. This pilot study aimed to assess the effect of education on the knowledge about SCD and NBS among pregnant women using the Healthy Beginning Initiative, a community-based framework. METHODS: A pre-post study design was used to evaluate knowledge of SCD and NBS in a convenience sample of 89 consenting pregnant women from three communities. Participants were given surveys prior to and following completion of a health education session. McNemar's test was used to compare the proportion of participants with correct responses. The level of significance was taken as p < 0.05. RESULTS: Compared to pre-test values, post-test values showed that participants understood that SCD is hereditary (93.3% vs. 69.7%), both parents must have at least one gene for someone to have SCD (98.9% vs. 77.5) and blood test is the right way to know if one has SCD (98.8% vs. 78.7%). Also, a large proportion of participants (post-test ~ 89.9%; compared to pre-test ~ 23.6%) understood that the chance of conceiving a child with SCD was 25% for a couple with the sickle cell trait (SCT). Knowledge of the possibility of diagnosing SCD shortly after birth was highly increased in the post test phase of the study when compared to the pre-test phase (93.3% vs. 43.9%, respectively). Concerning the overall knowledge scores, those with high level of knowledge significantly increase from 12.6% pretest to 87.4% posttest (p = 0.015). CONCLUSION: The health education intervention was associated with significant improvement on almost all measures of SCD knowledge. Focused health education for pregnant women using community structures can improve knowledge of SCD and NBS.
Subject(s)
Anemia, Sickle Cell , Health Education , Health Knowledge, Attitudes, Practice , Neonatal Screening , Humans , Female , Pilot Projects , Anemia, Sickle Cell/diagnosis , Anemia, Sickle Cell/genetics , Neonatal Screening/methods , Pregnancy , Adult , Infant, Newborn , Nigeria , Health Education/methods , Young Adult , Prenatal Care/methods , Pregnant Women/psychology , Pregnant Women/educationABSTRACT
OBJECTIVE: The purpose of this study is to examine the efficacy of BETTER (Brain Injury, Education, Training, and Therapy to Enhance Recovery) vs. usual transitional care management among diverse adults with traumatic brain injury (TBI) discharged home from acute hospital care and families. METHODS: This will be a single-site, two-arm, randomized controlled trial (N = 436 people, 218 patient/family dyads, 109 dyads per arm) of BETTER, a culturally- and linguistically-tailored, patient- and family-centered, TBI transitional care intervention for adult patients with TBI and families. Skilled clinical interventionists will follow a manualized protocol to address patient/family needs. The interventionists will co-establish goals with participants; coordinate post-hospital care, services, and resources; and provide patient/family education and training on self- and family-management and coping skills for 16 weeks following hospital discharge. English- and Spanish-speaking adult patients with mild-to-severe TBI who are discharged directly home from the hospital without inpatient rehabilitation or transfer to other settings (community discharge) and associated family caregivers are eligible and will be randomized to treatment or usual transitional care management. We will use intention-to-treat analysis to determine if patients receiving BETTER have a higher quality of life (primary outcome, SF-36) at 16-weeks post-hospital discharge than those receiving usual transitional care management. We will conduct a descriptive, qualitative study with 45 dyads randomized to BETTER, using semi-structured interviews, to capture perspectives on barriers and facilitators to participation. Data will be analyzed using conventional content analysis. Finally, we will conduct a cost/budget impact analysis, evaluating differences in intervention costs and healthcare costs by arm. DISCUSSION: Findings will guide our team in designing a future, multi-site trial to disseminate and implement BETTER into clinical practice to enhance the standard of care for adults with TBI and families. The new knowledge generated will drive advancements in health equity among diverse adults with TBI and families. TRIAL REGISTRATION: NCT05929833.
Subject(s)
Brain Injuries, Traumatic , Transitional Care , Adult , Humans , Quality of Life , Brain Injuries, Traumatic/rehabilitation , Caregivers , Patient Discharge , Randomized Controlled Trials as TopicABSTRACT
BACKGROUND: The widespread use of telehealth and regulatory changes that enhanced nurse practitioner (NP) practice authority because of the SARS-CoV-2 pandemic offers an opportunity to assess postpandemic NP satisfaction with telehealth care delivery and perceptions of its feasibility compared with in-person visits. PURPOSE: Outpatient chronic care delivery satisfaction and preference were compared among NPs who provide care to adults through in-person and/or telehealth visits and examined NP demographic and clinical characteristics associated with overall satisfaction by care delivery type. METHODOLOGY: Data were collected using a cross-sectional, descriptive design through online dissemination of The Care Delivery Satisfaction Survey to a nationally representative sample of 586 NPs. RESULTS: Compared with NPs using both visit types to deliver care, NPs delivering care in-person only had significantly lower satisfaction scores for interpersonal manner ( p = .0076) and communication ( p = .0108). NPs using telehealth only had significantly higher overall satisfaction and satisfaction subscale scores (all p < .01) compared with NPs using both visit types. Overall, 77% of NPs using both visit types preferred in-person delivery. CONCLUSIONS/IMPLICATIONS: NPs delivering telehealth care only were more satisfied with chronic care delivery than NPs using both delivery types. NPs using both types were more satisfied with interpersonal manner and communication compared with NPs delivering in-person care only. Most NPs using both types preferred in-person care delivery. Given increased telehealth use, health systems, academic institutions, and insurance companies can use these study findings to inform policy on telehealth resources and infrastructure.
Subject(s)
Nurse Practitioners , Telemedicine , Adult , Humans , Cross-Sectional Studies , Delivery of Health Care , Surveys and QuestionnairesABSTRACT
BACKGROUND: Vaso-occlusive crises (VOCs) cause debilitating pain and are a common cause of emergency department (ED) visits, for people with sickle cell disease (SCD). Strategies for achieving optimal pain control vary widely despite evidence-based guidelines. We tested existing guidelines and hypothesized that a patient-specific pain protocol (PSP) written by their SCD provider may be more effective than weight-based (WB) dosing of parenteral opiate medication, in relieving pain. METHODS: This study was a prospective, randomized controlled trial comparing a PSP versus WB protocol for patients presenting with VOCs to six EDs. Patients were randomized to a PSP or WB protocol prior to an ED visit. The SCD provider wrote their protocol and placed it in the electronic health record for future ED visits with VOC exclusion criteria that included preexisting PSP excluding parenteral opioid analgesia or outpatient use of buprenorphine or methadone or highly suspected for COVID-19. Pain intensity scores, side effects, and safety were obtained every 30 min for up to 6 h post-ED bed placement. The primary outcome was change in pain intensity score from placement in an ED space to disposition or 6 h. RESULTS: A total of 328 subjects were randomized; 104 participants enrolled (ED visit, target n = 230) with complete data for 96 visits. The study was unable to reach the target sample size and stopped early due to the impact of COVID-19. We found no significant differences between groups in the primary outcome; patients randomized to a PSP had a shorter ED length of stay (p = 0.008), and the prevalence of side effects was low in both groups. Subjects in both groups experienced both a clinically meaningful and a statistically significant decrease in pain (27 mm on a 0- to 100-mm scale). CONCLUSIONS: We found a shorter ED length of stay for patients assigned to a PSP. Patients in both groups experienced good pain relief without significant side effects.
Subject(s)
Anemia, Sickle Cell , COVID-19 , Humans , Prospective Studies , Pain/drug therapy , Pain/etiology , Pain Management/methods , Anemia, Sickle Cell/complications , Anemia, Sickle Cell/therapy , Emergency Service, Hospital , COVID-19/complications , Randomized Controlled Trials as TopicABSTRACT
OBJECTIVE: Despite research, national legislation, and clinical guidelines supporting transitional care, there is minimal benefit from existing transitional care interventions for racial/ethnic minorities with traumatic brain injury (TBI) discharged home from acute hospital care. Existing TBI transitional care interventions are not tailored to address the needs/preferences of patients from various racial/ethnic minority groups. The purpose of this study was to describe use of personalization to tailor a TBI transitional care intervention for various racial/ethnic groups. DESIGN: Following preliminary intervention manual development, a qualitative descriptive study was conducted using eight focus groups with 40 English-and Spanish-speaking participants (12 patients, 12 caregivers, and 16 providers). RESULTS: Three personalization-related themes emerged: 1) what is important to me, 2) finding someone to deliver the intervention who can adapt to my needs, and 3) respect over culture. Findings informed personalization strategies within our final manual. CONCLUSIONS: We recommend researchers who wish to use personalization to tailor interventions to consider: 1) allowing stakeholders to dictate what is most important and 2) implementing an iterative intervention development process with input from diverse stakeholders. Findings have implications for informing the development of transitional care interventions to increase the likelihood that interventions are inclusive of needs and preferences of various races/ethnicities.
Subject(s)
Brain Injuries, Traumatic , Transitional Care , Humans , Ethnicity , Respect , Minority Groups , Brain Injuries, Traumatic/therapyABSTRACT
Individuals with sickle cell disease (SCD) have historically been considered underweight. Despite increasing body mass index (BMI) in the general population, the prevalence of overweight and obese status remains unclear in the adult SCD population. Our primary aim was to determine the prevalence of overweight and obese status and to identify associations between BMI, demographic, and clinical characteristics. We conducted an analysis of abstracted electronic health record data and patient-reported outcomes from the Sickle Cell Disease Implementation Consortium registry; individuals aged 20-45 years were included. The median (interquartile range) BMI for the 1664 adults in this analysis was 23.9 (21.1-28) kg/m2 . In this cohort, 42.9% had a BMI of >25 kg/m2 (Centers for Disease Control and Prevention definition of overweight/obese). In multivariable analysis, higher odds of being overweight or obese were associated with female gender, older age, college education, private insurance, and hypertension diagnosis. Higher odds of a BMI of >25 kg/m2 were observed in individuals with HbSC or HbSß+ thalassaemia regardless of hydroxycarbamide (hydroxyurea) exposure (odds ratio [OR] 3.4, p < 0.0001) and HbSS or HbSß0 thalassaemia exposed to hydroxycarbamide (OR 1.6, p = 0.0003) compared to those with HbSS or HbSß0 thalassaemia with no hydroxycarbamide exposure. These data highlight the importance of early identification, prevention, and intervention for increasing BMI to reduce obesity-related complications that may impact SCD-related complications.
Subject(s)
Anemia, Sickle Cell , Hemoglobin SC Disease , Adult , Humans , Female , Overweight/complications , Overweight/epidemiology , Prevalence , Anemia, Sickle Cell/complications , Anemia, Sickle Cell/epidemiology , Anemia, Sickle Cell/diagnosis , Obesity/complications , Obesity/epidemiology , Hemoglobin SC Disease/complications , Body Mass Index , Hydroxyurea/therapeutic useABSTRACT
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.
Subject(s)
Anemia, Sickle Cell , Anemia, Sickle Cell/therapy , Child , Health Personnel , Humans , North Carolina , Primary Health Care , Surveys and QuestionnairesABSTRACT
Sickle cell disease (SCD) is a chronic genetic disease that causes life-threatening complications and requires robust comprehensive management. Developing comprehensive SCD programs in sub-Saharan African countries requires knowledge of the cultural factors affecting health-seeking behavior. We utilized an ethnographic approach and the frameworks of Dutta and Habermas to explore cultural factors influencing SCD management in rural Sierra Leone. A purposive sample of 27 individuals with SCD and their family and professional caregivers were observed and interviewed from March 2019 to April 2019. We identified four domains (Cultural Beliefs, Cultural Values, Cultural Practices, and Dealing with SCD) of cultural influences on SCD management, and 12 sub-themes (related to collectivism; spiritual, traditional, and Western beliefs and practices; and lived experiences) that reflect the personal, social, structural, and contextual complexities of SCD management. Further research regarding roles of traditional and spiritual leaders, combinations of Western and traditional practices, and culturally centered interventions is warranted.
Subject(s)
Anemia, Sickle Cell , Rural Population , Anemia, Sickle Cell/therapy , Humans , Sierra LeoneABSTRACT
The coronavirus disease 2019 mortality rate among Black adults in the U.S. is double that of other racial and ethnic groups. The current pandemic is re-illuminating health inequities that are pervasive in our society and reflected in our health system. This creative controversy describes critical conversations needed within nursing to acknowledge the contribution of structural racism to health equity. We recommend implementing structural competency into nursing education and prioritizing nursing research and policies focused on health equity and community-based interventions.
Subject(s)
Black or African American/statistics & numerical data , COVID-19/ethnology , Health Status Disparities , Nursing/organization & administration , Racism/prevention & control , Adult , COVID-19/mortality , Humans , United States/epidemiologyABSTRACT
OBJECTIVES: Painful vaso-occlusive episodes (VOE) are the most common reason for emergency department (ED) visits experienced by patients with sickle cell disease (SCD). The National Heart, Lung and Blood Institute (NHLBI) evidence-based recommendations for VOE treatment are based primarily on expert opinion. In this randomized controlled trial (RCT), we will compare changes in pain scores between patients randomized to a patient-specific analgesic protocol versus those randomized to a weight-based analgesic protocol, as recommended by the NHLBI guidelines. METHODS: We report the rationale and design of a multi-site, phase III, single-blinded, RCT to be conducted in six EDs in the United States. Eligible participants will be randomized after providing consent, anticipating 50% of those randomized would have an ED visit during the enrollment period. A total of 230 participants with one VOE ED visit provides sufficient power to detect a clinically significant difference in pain score reductions of 14 between groups with 0.05 type I error. Uniquely, this trial randomizes participants in a larger population than the study population, given the impossibility of consenting and randomizing participants during emergencies. The primary endpoint is the change in pain scores in the ED from time of placement in treatment area to time of disposition (hospitalization, discharged home, or assigned to observation status) or a maximum treatment duration of 6 hours. Additional outcomes include hospitalizations and ED visits seven days post enrollment, side effects, and safety assessments. CONCLUSIONS: The COMPARE-VOE study design will provide high-level evidence to support the NHLBI VOE treatment guidelines.
Subject(s)
Anemia, Sickle Cell , Analgesics/therapeutic use , Anemia, Sickle Cell/drug therapy , Anemia, Sickle Cell/therapy , Humans , Pain/drug therapy , Pain/etiology , Pain Management , Pain Measurement , Randomized Controlled Trials as TopicABSTRACT
A Black woman has an 85.7% chance of developing hypertension in her lifetime, yet she is less likely to be optimally treated. The purpose of this research report is to describe the factors associated with self-reported hypertension in a sample of Black women. A descriptive study was conducted using a researcher-developed survey. Responses were obtained from 201 adult Black women from 19 to 92 years of age. Descriptive and comparative analyses were performed. The frequency of self-reported hypertension in the sample was low (n = 54, 27%). The self-report hypertension group was significantly older (p < 0.05) and obese (61%). There were significant associations between self-report hypertension and greater income (c2 = 9.24, p = 0.002, f = 0.232), self-report hypertension and higher education (c2 = 5.66, p = 0.017, phi = 0.182), and self-report hypertension and not having Medicaid (c2 = 5.05, p = 0.025, f = 0.174). APRNs should stress the importance of routine health screenings and healthy lifestyle behaviors in accordance with patient needs.
Subject(s)
Black or African American , Hypertension , Adult , Black or African American/statistics & numerical data , Aged , Aged, 80 and over , Female , Humans , Hypertension/ethnology , Middle Aged , Self Report , Socioeconomic Factors , United StatesABSTRACT
OBJECTIVE: The purpose of this review is to determine the factors associated with the outcomes of community health programs with particular focus on low- to middle-income countries. In addition, this review aims to suggest how these factors can affect the creation of a Sickle Cell Anemia health program in sub-Saharan Africa. DESIGN AND SAMPLE: A literature review spanning the last decade (March 2007 to February 2017) was conducted using the Whittemore and Knafl integrative review framework. RESULTS: Community ownership, networking, and resource allocation were identified as themes that affect community health program outcomes. Attempts to use a guiding principle or process to implement community health programs were also apparent in the literature. CONCLUSION: More rigorous scientific investigation is needed to ensure that these community health programs are effective and have measurable outcomes. Nursing is well positioned, considering the metaparadigm concepts that guide practice, to forge this research. Nursing scientists could fill the gap in knowledge related to community health program outcomes in low- to middle-income countries while achieving global objectives focused on decreasing noncommunicable disease burden.