scholarly journals The personal and clinical impact of screen-detected maternal rheumatic heart disease in Uganda: a prospective follow up study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Sonia Voleti ◽  
Emmy Okello ◽  
Meghna Murali ◽  
Rachel Sarnacki ◽  
Albert Majwala ◽  
...  

Abstract Background Pre-existing maternal cardiac disease is a significant contributor to adverse maternal, fetal, and neonatal outcomes. In 2015–2017, our team conducted the first community-based study of maternal rheumatic heart disease (RHD) in sub-Saharan Africa and identified RHD in 88% of those with pre-existing heart disease. Here we conducted a follow up investigation of women previously identified with RHD, describing clinical and echocardiographic outcomes, identifying barriers to medical adherence and evaluating the personal impact of RHD. Methods A 2 week prospective follow up was completed at sites in Central and Eastern Uganda. Participants underwent a three-step mixed methods study comprising of 1) direct structured interview targeting clinical history and medication adherence, 2) echocardiogram to evaluate left-sided heart valves, and 3) semi-structured guideline interview to elicit personal impacts of RHD. Results The team evaluated 40 (80%) of the original 51 mothers with RHD at a median post-partum time of 2.5 years after delivery (IQR 0.5). Echocardiographic data showed improvement in nine women with the remaining 31 women showing stable echocardiographic findings. Adherence to Benzathine penicillin G (BPG) prophylaxis was poor, with 70% of patients either poorly adherent or non-adherent. Three major themes emerged from interviews: 1) social determinants of health (World Health Organization, Social determinants of health, 2019) negatively affecting healthcare, 2) RHD diagnosis negatively affecting female societal wellbeing, 3) central role of spouse in medical decision making. Conclusions Screening echocardiography can identify women with pre-existing rheumatic heart disease during pregnancy, but long-term follow-up in Uganda reveals adherence to medical care following diagnosis, including BPG, is poor. Additionally, mothers diagnosed with RHD may experience unintended consequences such as social stigmatization. As identification of occult RHD is critical to prevent adverse pregnancy outcomes, further research is needed to determine how to best support women who face a new diagnosis of RHD, and to determine the role of screening echocardiography in high-risk settings.

2019 ◽  
Vol 24 (2) ◽  
pp. 159-165
Author(s):  
Jillian M. Berkman ◽  
Jonathan Dallas ◽  
Jaims Lim ◽  
Ritwik Bhatia ◽  
Amber Gaulden ◽  
...  

OBJECTIVELittle is understood about the role that health disparities play in the treatment and management of brain tumors in children. The purpose of this study was to determine if health disparities impact the timing of initial and follow-up care of patients, as well as overall survival.METHODSThe authors conducted a retrospective study of pediatric patients (< 18 years of age) previously diagnosed with, and initially treated for, a primary CNS tumor between 2005 and 2012 at Monroe Carell Jr. Children’s Hospital at Vanderbilt. Primary outcomes included time from symptom presentation to initial neurosurgery consultation and percentage of missed follow-up visits for ancillary or core services (defined as no-show visits). Core services were defined as healthcare interactions directly involved with CNS tumor management, whereas ancillary services were appointments that might be related to overall care of the patient but not directly focused on treatment of the tumor. Statistical analysis included Pearson’s chi-square test, nonparametric univariable tests, and multivariable linear regression. Statistical significance was set a priori at p < 0.05.RESULTSThe analysis included 198 patients. The median time from symptom onset to initial presentation was 30.0 days. A mean of 7.45% of all core visits were missed. When comparing African American and Caucasian patients, there was no significant difference in age at diagnosis, timing of initial symptoms, or tumor grade. African American patients missed significantly more core visits than Caucasian patients (p = 0.007); this became even more significant when controlling for other factors in the multivariable analysis (p < 0.001). African American patients were more likely to have public insurance, while Caucasian patients were more likely to have private insurance (p = 0.025). When evaluating survival, no health disparities were identified.CONCLUSIONSNo significant health disparities were identified when evaluating the timing of presentation and survival. A racial disparity was noted when evaluating missed follow-up visits. Future work should focus on identifying reasons for differences and whether social determinants of health affect other aspects of treatment.


2020 ◽  
Vol 41 (Supplement_1) ◽  
Author(s):  
A Horton ◽  
B Remenyi ◽  
K Davis ◽  
N Mock ◽  
E Paratz ◽  
...  

Abstract Background The Rheumatic Heart disease in Timor Leste school students (RHD-TL) study identified Timor Leste as having some of the highest rates of definite rheumatic heart disease (RHD) in the world. The RHD-TL follow-up study aimed to assess the delivery and outcomes of the secondary prophylaxis program in known patients with echocardiographic screen detected definite and borderline RHD. Methods School-students in Timor Leste where reassessed over a 3-year period since the initial study in 2016. Prospective assessments included adherence to secondary prophylaxis, complications of prophylaxis, follow-up clinical assessment and serial echocardiography. Of the 48 patients, 25 Definite and 23 Borderline, 38 (79%) of all patients, and 92% of definite RHD cases have had one or more follow-up assessments including full datasets for adherence, recurrence rates and progression of disease. Follow-up is provided by the volunteer paediatric cardiology team and rheumatic heart disease team of two NGOs in collaboration with local clinics. Results The median duration of follow-up of the 38 patients was of 1.6 years. The median age was 13 years (range 8-22) and 75% were female. Adherence rates in patients with definite RHD was on average greater than 95% during the follow-up period. Of the 23 patients with mild or moderate RHD one case with documented acute rheumatic fever (ARF) recurrence progressed whilst 8 cases improved on benzathine-penicillin G (BPG) therapy. There was no progression of the 6 borderline cases who were not prescribed BPG. Out of the 9 borderline cases in whom BPG was prescribed, one, with 67% adherence, had a documented episode of ARF leading to echocardiographic progression and moderate definite RHD. Conclusion This was the first follow-up study to look at disease natural history, both in treated and untreated groups, in Timor-Leste and brought practical insights into the efficacy of the Timor Leste RHD monitoring and prophylaxis programs. Its ongoing project will enable advocacy and quality assessment for the program as it expands. Abstract 225 Figure 1.


Circulation ◽  
2020 ◽  
Vol 142 (20) ◽  
Author(s):  
Andrea Beaton ◽  
Flavia B. Kamalembo ◽  
James Dale ◽  
Joseph H. Kado ◽  
Ganesan Karthikeyan ◽  
...  

Rheumatic heart disease (RHD) affects ≈40 million people and claims nearly 300 000 lives each year. The historic passing of a World Health Assembly resolution on RHD in 2018 now mandates a coordinated global response. The American Heart Association is committed to serving as a global champion and leader in RHD care and prevention. Here, we pledge support in 5 key areas: (1) professional healthcare worker education and training, (2) technical support for the implementation of evidence-based strategies for rheumatic fever/RHD prevention, (3) access to essential medications and technologies, (4) research, and (5) advocacy to increase global awareness, resources, and capacity for RHD control. In bolstering the efforts of the American Heart Association to combat RHD, we hope to inspire others to collaborate, communicate, and contribute.


2021 ◽  
Vol 75 (6) ◽  
Author(s):  
Nuria Menéndez Álvarez ◽  
Emiliano Diez Villoria ◽  
Estíbaliz Jimenez Arberas ◽  
Ana María Castaño Pérez ◽  
Antonio León García Izquierdo

Importance: For the first time in recent history, people worldwide have faced severe restrictions in occupations because of the measures adopted by governments to contain the coronavirus disease 2019 (COVID-19) crisis. Objective: To determine the limitations on participation of occupational therapists and occupational therapy students during “lockdown” and their impact on social determinants of health. Design: A cross-sectional, descriptive study conducted via an online survey. Participants: A total of 488 occupational therapists and occupational therapy students in North America, South America, and Europe. Outcomes and Measures: A questionnaire consisting of the World Health Organization Disability Assessment Schedule 2.0 of the International Classification of Functioning, Disability and Health and items developed to assess the impact of lockdown on daily life was emailed to occupational therapy professional associations, organizations, and universities between April and June 2020. It was available in English, Spanish, and Portuguese and met all the parameters listed in the Declaration of Helsinki. Results: The roles and routines of people across the developed world have been affected by lockdown measures. The study shows marked differences between participants in the domains of getting along and life activities, as well as influence on the environment. Moreover, South American participants experienced these difficulties to a greater extent than European participants. Conclusions and Relevance: This study quantifies the limitations in the participation of occupational therapists and occupational therapy students and the relationship of occupation to social determinants of health. What This Article Adds: The results of this research corroborate the relationship between health and occupation and highlight elements, such as the environment and context, that are important in occupational therapy. Therapists’ ability to analyze occupation in relation to contextual and cultural factors will benefit clients.


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