Patient Views on the Management of Rheumatic Fever and Rheumatic Heart Disease in the Kimberley: A Qualitative Study

Mincham, Christine M.; Toussaint, Sandy; Mak, Donna B; Plant, Aileen J.

doi:10.1111/j.1440-1584.2003.00531.x

Cited by 37 publications

(68 citation statements)

References 13 publications

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“…A dedicated staff member for the ARF prevention program seems to be an important element in effective prophylaxis delivery. 25 Chronic staff shortages and high turnover are unfortunate features of remote health services. Although this study did not address sustainability, encouraging community Aboriginal Health Workers to take more ownership of local RHD prevention programs could be one way of promoting continuity.…”

Section: Discussionmentioning

confidence: 99%

Assessment of a register‐based rheumatic heart disease secondary prevention program in an Australian Aboriginal community

Eissa

Lee

et al. 2005

Australian and New Zealand Journal of Public Health

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A cute rheumatic fever (ARF) and its sequelae are now rare in wealthy industrialised nations.1 Yet, ARF and rheumatic heart disease (RHD) remain important causes of mortality and chronic ill health in poor countries and minority Indigenous populations, such as Aboriginal Australians. 2,3 In the Top End of the Northern Territory, 2.7% of Aboriginal people have an episode of ARF in their lifetime, compared with 0.014% of the non-Aboriginal population. 4 Primary prophylaxis of ARF, the provision of antibiotics to treat streptococcal pharyngitis, is largely unworkable and unsustainable in high-incidence populations, especially where health services are underresourced. 5 Besides, many cases of ARF do not follow clinically identified pharyngitis. Register-based secondary prevention programs can be effective at limiting recurrent ARF and progression to RHD, 7,8 but require early and correct diagnosis of ARF/RHD, followed by long-term administration of an antibiotic (usually benzathine penicillin) on a regular basis. The establishment of a register of patients with known past ARF and/or RHD is the central requirement of a secondary prevention program.9,10 Evaluation of service delivery is regarded as an important part of program design. 11,12A register-based RHD secondary prevention program was established in the Top End of the Northern Territory (NT) in 1997.13 New and recurrent cases of ARF are notif iable in the NT. Clinicians are encouraged to inform the register of all new cases of ARF and newly diagnosed RHD, including 'probable' cases where the diagnosis has not been proven but there is a high index of suspicion. Sources of data for the register include notifications, hospital discharge records, community clinic records, echocardiogram reports and professional correspondence. The register keeps details

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Section: Discussionmentioning

confidence: 99%

Assessment of a register‐based rheumatic heart disease secondary prevention program in an Australian Aboriginal community

Eissa

Lee

et al. 2005

Australian and New Zealand Journal of Public Health

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“…Another Australian study reported that the use of secondary prophylaxis was closely linked with positive patient-staff interactions. 52 These studies imply that in a remote Aboriginal context, self-management for ARF/RHD may play a secondary role to the quality of relationships between health staff and patients/families. Nonetheless, these findings may be specific to their contexts and not generalizable to other cultural situations.…”

Section: Clinical Practicementioning

confidence: 98%

“…59 Other studies have confirmed that the administration of secondary prophylaxis improves where clear responsibility is placed upon a particular staff member to actively follow-up clients who miss injections. 52 One study in central Australia investigated the novel concept of delivering secondary prophylaxis at times of the full moon. 60 While utilization increased significantly it did not occur at the time of the full moon.…”

Section: Clinical Practicementioning

confidence: 99%

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

Rémond

Coyle

Mills

et al. 2016

Cardiology in Review

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Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) are autoimmune conditions resulting from infection with group A streptococcus. Current management of these conditions includes secondary antibiotic prevention. This comprises regular 3 to 4 weekly long-acting intramuscular benzathine penicillin injections. Secondary antibiotic prevention aims to protect individuals against reinfection with group A streptococcus, thereby preventing recurrent ARF and the risk of further damage to the heart valves. However, utilization of benzathine penicillin can be poor leaving patients at risk of avoidable and progressive heart damage. This review utilizes the Chronic Care Model as a framework to discuss initiatives to enhance the delivery of secondary antibiotic prophylaxis for ARF and RHD. Results from the search strategy utilized revealed that there is limited pertinent published evidence. The evidence that is available suggests that register/recall systems, dedicated health teams for delivery of secondary antibiotic prophylaxis, education about ARF and RHD, linkages with the community (particularly between health services and schools), and strong staff-patient relationships may be important. However, it is difficult to generalize findings from individual studies to other settings and high quality studies are lacking. Although secondary antibiotic prophylaxis is an effective treatment for those with ARF or RHD, the difficulties in implementing effective programs that reduce the burden of ARF and RHD demonstrates the importance of ongoing work in developing and evaluating research translation initiatives.

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“…Continued prophylaxis to age 35 is recommended for moderate RHD and to age 40 or lifelong for severe RHD, especially in those requiring valve surgery 7. Challenges to delivery of this regimen in remote Australian settings are similar to those in many resource‐poor populations globally with the highest RHD burdens: high turnover and limited ARF knowledge among healthcare staff; young and mobile patients; pain of injections; and cultural factors leading to different concepts of disease causation and treatment, along with barriers to acceptance of Western medicine 8, 9, 10. The proportion of patients in the NT in 2009 with ARF/RHD achieving ≥80% of scheduled injections—the current Australian benchmark for acceptable adherence7—was only ≈25% 11…”

Section: Introductionmentioning

confidence: 99%

Improving Delivery of Secondary Prophylaxis for Rheumatic Heart Disease in a High‐Burden Setting: Outcome of a Stepped‐Wedge, Community, Randomized Trial

Ralph

Dassel

Kirby

et al. 2018

JAHA

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BackgroundHealth system strengthening is needed to improve delivery of secondary prophylaxis against rheumatic heart disease.Methods and ResultsWe undertook a stepped‐wedge, randomized trial in northern Australia. Five pairs of Indigenous community clinics entered the study at 3‐month steps. Study phases comprised a 12 month baseline phase, 3 month transition phase, 12 month intensive phase and a 3‐ to 12‐month maintenance phase. Clinics received a multicomponent intervention supporting activities to improve penicillin delivery, aligned with the chronic care model, with continuous quality‐improvement feedback on adherence. The primary outcome was the proportion receiving ≥80% of scheduled penicillin injections. Secondary outcomes included “days at risk” of acute rheumatic fever recurrence related to late penicillin and acute rheumatic fever recurrence rates. Overall, 304 patients requiring prophylaxis were eligible. The proportion receiving ≥80% of scheduled injections during baseline was 141 of 304 (46%)—higher than anticipated. No effect attributable to the study was evident: in the intensive phase, 126 of 304 (41%) received ≥80% of scheduled injections (odds ratio compared with baseline: 0.78; 95% confidence interval, 0.54–1.11). There was modest improvement in the maintenance phase among high‐adhering patients (43% received ≥90% of injections versus 30% [baseline] and 28% [intensive], P<0.001). Also, the proportion of days at risk in the whole cohort decreased in the maintenance phase (0.28 versus 0.32 [baseline] and 0.34 [intensive], P=0.001). Acute rheumatic fever recurrence rates did not differ between study sites during the intensive phase and the whole jurisdiction (3.0 versus 3.5 recurrences per 100 patient‐years, P=0.65).ConclusionsThis strategy did not improve adherence to rheumatic heart disease secondary prophylaxis within the study time frame. Longer term primary care strengthening strategies are needed.Clinical Trial Registration URL: http://www.anzctr.org.au. Unique identifier: ACTRN12613000223730.

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Patient Views on the Management of Rheumatic Fever and Rheumatic Heart Disease in the Kimberley: A Qualitative Study

Abstract: Participants focused on issues closely related to effective and ineffective management of RF/RHD. The lessons learned are indicators for health staff attempting to improve the quality of management that people receive.

Cited by 37 publications

References 13 publications

Assessment of a register‐based rheumatic heart disease secondary prevention program in an Australian Aboriginal community

Assessment of a register‐based rheumatic heart disease secondary prevention program in an Australian Aboriginal community

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

Improving Delivery of Secondary Prophylaxis for Rheumatic Heart Disease in a High‐Burden Setting: Outcome of a Stepped‐Wedge, Community, Randomized Trial

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