Adherence to secondary prophylaxis and disease recurrence in 536 Brazilian children with rheumatic fever

Abstract

BackgroundMore than 15 million people worldwide have rheumatic fever (RF) and rheumatic heart disease due to RF. Secondary prophylaxis is a critical cost-effective intervention for preventing morbidity and mortality related to RF. Ensuring adequate adherence to secondary prophylaxis for RF is a challenging task. This study aimed to describe the rates of recurrent episodes of RF, quantify adherence to secondary prophylaxis, and examine the effects of medication adherence to the rates of RF in a cohort of Brazilian children and adolescents with RF.MethodsThis retrospective study took place in the Pediatric Rheumatology outpatient clinic at a tertiary care hospital (Instituto de Puericultura e Pediatria Martagão Gesteira) in Rio de Janeiro, Brazil, and included patients with a diagnosis of RF from 1985 to 2005.Results536 patients with RF comprised the study sample. Recurrent episodes of RF occurred in 88 of 536 patients (16.5%). Patients with a recurrent episode of RF were younger (p < 0.0001), more frequently males (p = 0.003), and less adherent (p < 0.0001) to secondary prophylaxis than patients without RF recurrence. Non-adherence to medication at any time during follow-up was detected in 35% of patients. Rates of non-adherence were higher in the group of patients that were lost to follow-up (42%) than in the group of patients still in follow-up (32%) (p = 0.027). Appointment frequency was inadequate in 10% of patients. Higher rates of inadequate appointment frequency were observed among patients who were eventually lost to follow-up (14.5%) than in patients who were successfully followed-up (8%) (p = 0.022). 180 patients (33.5%) were lost to follow up at some point in time.ConclusionsWe recommend implementation of a registry, and a system of active search of missing patients in every service responsible for the follow-up of RF patients. Measures to increase adherence to secondary prophylaxis need to be implemented formally, once non-adherence to secondary prophylaxis is the main cause of RF recurrence. Detection of irregularity in secondary prophylaxis or in appointments should be an alert about the possibility of loss of follow-up and closer observation should be instituted.

Approaches to Improving Adherence to Secondary Prophylaxis for Rheumatic Fever and Rheumatic Heart Disease

“…ARF/RHD patients not receiving adequate secondary prophylaxis are at risk of avoidable and progressive heart damage. Suboptimal delivery of secondary antibiotic prophylaxis has been highlighted in numerous countries including Australia, 9 Egypt, 10 Taiwan, 11 Brazil, 12 and South Africa. 13 It has been suggested that the underutilization of LAB may be because of the longevity and inconvenience of treatment (up to 20 years of LAB), the pain of injections, poor community engagement, inadequate patient education, cost and distance from health centres.…”

Clinical Outcomes in 3343 Children and Adults With Rheumatic Heart Disease From 14 Low- and Middle-Income Countries

“…Suboptimal use of inexpensive interventions such as secondary penicillin prophylaxis and oral anticoagulation is well recognized, 9,10 and contemporary data are needed to 8 document the impact of their underuse on important clinical outcomes. In addition, there is limited information on the determinants of disease progression and on clinical outcomes in contemporary patients with RHD living in LMICs.…”

Rheumatic fever and rheumatic heart disease among children presenting to two referral hospitals in Harare, Zimbabwe

“…[22,30] Secondary prophylaxis has been shown to be effective only when there is a high level of compliance, with an increased risk of recurrence and more severe RHD among patients defaulting treatment. [31][32][33] While the majority (96.2%) of children previously diagnosed with ARF/RHD were on penicillin prophylaxis at presentation, only 68.0% reported taking the prophylaxis regularly. This lack of adherence to penicillin prophylaxis has also been reported in a study from 16 developing countries between 1986 and 1990, when adherence was reported to be 63.2%.…”