Pacific Fono: a community-based initiative to improve rheumatic fever service delivery for Pacific Peoples in South Auckland.

BACKGROUND AND CONTEXT Rheumatic fever inequitably affects Maori and Pacific children in New Zealand. School-based throat swabbing services, such as the South Auckland Mana Kidz programme, are a key element of rheumatic fever prevention interventions. ASSESSMENT OF THE PROBLEM Counties Manukau has the highest national rates of rheumatic fever (4.7 per 100,000 for first recorded rates). Given these disparities, Mana Kidz undertook an exploratory, community-based initiative to improve its service delivery for Pacific Peoples. RESULTS Mana Kidz held a Pacific Leaders' Fono (meeting) to discuss initiatives to improve rheumatic fever outcomes in South Auckland focused around challenges and solutions for addressing rheumatic fever, effective engagement strategies and leadership qualities needed to drive initiatives. Oral and written responses from 66 attendees were collected and thematically analysed. Four key themes were identified around challenges and solutions for rheumatic fever: social determinants of health; cultural responsiveness; health system challenges; and education, promotion and literacy. Three effective engagement strategies were identified: by Pacific for Pacific; developing a rheumatic fever campaign; improving health services. Three key leadership attributes were identified: culturally responsive leaders; having specific expertise and skills; youth-driven leadership. STRATEGIES FOR IMPROVEMENT Mana Kidz has now created Pacific leadership roles in rheumatic fever governance groups, promotes Pacific workforce development and endorses Pacific-led initiatives and partnerships. LESSONS Recognising the value of critical reflection and the importance of good governance and collaborative, right-based partnerships in health services.

Hyperendemic rheumatic heart disease in a remote Australian town identified by echocardiographic screening.

OBJECTIVES: Using echocardiographic screening, to estimate the prevalence of rheumatic heart disease (RHD) in a remote Northern Territory town. DESIGN: Prospective, cross-sectional echocardiographic screening study; results compared with data from the NT rheumatic heart disease register. SETTING, PARTICIPANTS: People aged 5-20 years living in Maningrida, West Arnhem Land (population, 2610, including 2366 Indigenous Australians), March 2018 and November 2018. INTERVENTION: Echocardiographic screening for RHD by an expert cardiologist or cardiac sonographer. MAIN OUTCOME MEASURES: Definite or borderline RHD, based on World Heart Federation criteria; history of acute rheumatic fever (ARF), based on Australian guidelines for diagnosing ARF. RESULTS: The screening participation rate was 72%. The median age of the 613 participants was 11 years (interquartile range, 8-14 years); 298 (49%) were girls or women, and 592 (97%) were Aboriginal Australians. Definite RHD was detected in 32 screened participants (5.2%), including 20 not previously diagnosed with RHD; in five new cases, RHD was classified as severe, and three of the participants involved required cardiac surgery. Borderline RHD was diagnosed in 17 participants (2.8%). According to NT RHD register data at the end of the study period, 88 of 849 people in Maningrida and the surrounding homelands aged 5-20 years (10%) were receiving secondary prophylaxis following diagnoses of definite RHD or definite or probable ARF. CONCLUSION: Passive case finding for ARF and RHD is inadequate in some remote Australian communities with a very high burden of RHD, placing children and young people with undetected RHD at great risk of poor health outcomes. Active case finding by regular echocardiographic screening is required in such areas.

Priorities for improved management of acute rheumatic fever and rheumatic heart disease: analysis of cross-sectional continuous quality improvement data in Aboriginal primary healthcare centres in Australia.

Objective This study investigated the delivery of guideline-recommended services for the management of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Australian primary healthcare centres participating in the Audit and Best Practice for Chronic Disease (ABCD) National Research Partnership project. Methods ARF and RHD clinical audit data were collected from 63 Aboriginal centres in four Australian jurisdictions using the ABCD ARF/RHD audit tool. Records of up to 30 patients treated for ARF and/or RHD were analysed per centre from the most recent audit conducted between 2009 and 2014. The main outcome measure was a quality of ARF and RHD care composite indicator consisting of nine best-practice service items. Results Of 1081 patients, most were Indigenous (96%), female (61%), from the Northern Territory and Queensland (97%) and <25 years of age (49%). The composite indicator was highest in the 0-14 year age group (77% vs 65-67% in other age groups). Timely injections and provision of client education are important specific areas for improvement. Multiple regression showed age >15 years to be a significant negative factor for several care indicators, particularly for the delivery of long-acting antibiotic injections and specialist services in the 15-24 year age group. Conclusions The results suggest that timely injection and patient education are priorities for managing ARF and RHD, particularly focusing on child-to-adult transition care. What is known about the topic? The burden of rheumatic fever and RHD in some Aboriginal communities is among the highest documented globally. Guideline-adherent RHD prevention and management in primary health care (PHC) settings are critically important to reduce this burden. Continuous quality improvement (CQI) is a proven strategy to improve guideline adherence, using audit cycles and proactive engagement of PHC end users with their own data. Previously, such CQI strategies using a systems approach were shown to improve delivery of ARF and RHD care in six Aboriginal health services (three government and three community controlled). What does this paper add? This paper focuses on the variation across age groups in the quality of ARF and/or RHD care according to nine quality of care indicators across 63 PHC centres serving the Aboriginal population in the Northern Territory, Queensland, South Australia and Western Australia. These new findings provide insight into difference in quality of care by life stage, indicating particular areas for improvement of the management of ARF and RHD at the PHC level, and can act as a baseline for monitoring of care quality for ARF and RHD into the future. What are the implications for practitioners? Management plans and innovative strategies or systems for improving adherence need to be developed as a matter of urgency. PHC professionals need to closely monitor adherence to secondary prophylaxis at both the clinic and individual level. RHD priority status needs to be assigned and recorded as a tool to guide management. Systems strengthening needs to particularly target child-to-adult transition care. Practitioners are urged to keep a quick link to the RHDAustralia website to access resources and guidelines pertaining to ARF and RHD (https://www.rhdaustralia.org.au/arf-rhd-guideline, accessed 3 October 2019). CQI strategies can assist PHC centres to improve the care they provide to patients.

Risk Factors for Acute Rheumatic Fever: Literature Review and Protocol for a Case-Control Study in New Zealand.

Acute rheumatic fever (ARF) and its sequela, rheumatic heart disease (RHD), have largely disappeared from high-income countries. However, in New Zealand (NZ), rates remain unacceptably high in indigenous Maori and Pacific populations. The goal of this study is to identify potentially modifiable risk factors for ARF to support effective disease prevention policies and programmes. A case-control design is used. Cases are those meeting the standard NZ case-definition for ARF, recruited within four weeks of hospitalisation for a first episode of ARF, aged less than 20 years, and residing in the North Island of NZ. This study aims to recruit at least 120 cases and 360 controls matched by age, ethnicity, gender, deprivation, district, and time period. For data collection, a comprehensive pre-tested questionnaire focussed on exposures during the four weeks prior to illness or interview will be used. Linked data include previous hospitalisations, dental records, and school characteristics. Specimen collection includes a throat swab (Group A Streptococcus), a nasal swab (Staphylococcus aureus), blood (vitamin D, ferritin, DNA for genetic testing, immune-profiling), and head hair (nicotine). A major strength of this study is its comprehensive focus covering organism, host and environmental factors. Having closely matched controls enables the examination of a wide range of specific environmental risk factors.

Mismatches between health service delivery and community expectations in the provision of secondary prophylaxis for rheumatic fever in New Zealand.

OBJECTIVE: Rheumatic fever (RF) recurrence prevention requires secondary prophylaxis for at least ten years. However, recurrences of rheumatic fever (RRF) persist disproportionately affecting Maori and Pacific youth. Reasons for recurrence rates are not well understood and commonly attributed to patient non-adherence. This research explored Maori and Pacific family experiences of RRF to better understand barriers to accessing secondary prophylaxis to inform health service improvements. METHODS: Participants were Maori and Pacific patients who had RRF or unexpected rheumatic heart disease and their family; and health professionals working in RF contexts. Kaupapa Maori, Talanga and Kakala Pacific qualitative methodologies were employed. Data were thematically analysed using a general inductive approach. RESULTS: Data collection included 38 interviews with patients and families (n=80), six focus group interviews and nine interviews with health providers (n=33) from seven geographic regions. Three key themes were identified where mismatches occurred between services and community needs: 1. Model of delivery; 2. Interpersonal approaches to care; and 3. Adolescent care. Conclusions and Public health implications: Successful RRF prevention requires interventions to address structural causes of inequity, appropriate clinical guidelines and quality health services. Service-delivery models should provide regular prophylaxis in an accessible manner through culturally-safe, community-based, age-appropriate care.

"That Heart Sickness": Young Aboriginal People's Understanding of Rheumatic Fever.

High rates of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Australia predominate in young Aboriginal people highlighting underlying racial and equity issues.  This article focuses on the perceptions of the disease among young Aboriginal people living in remote Australia. Participant understanding was constrained by clinicians' use of language rooted in biomedicine and delivered through English, a second language for all participants. Clinicians' communicative competency is a social determinant of Aboriginal health. We recommend that the use of Aboriginal languages be prioritized in health services caring for Aboriginal people and that biomedical dominance in the services be relinquished.

How Many Doses Make a Difference? An Analysis of Secondary Prevention of Rheumatic Fever and Rheumatic Heart Disease.

Background Acute rheumatic fever ( ARF ) and rheumatic heart disease cause substantial burdens worldwide. Long-term antibiotic secondary prophylaxis is used to prevent disease progression, but evidence for benefits of different adherence levels is limited. Using data from northern Australia, we identified factors associated with adherence, and the association between adherence and ARF recurrence, progression to rheumatic heart disease, worsening or improvement of rheumatic heart disease, and mortality. Methods and Results Factors associated with adherence (percent of doses administered) were analyzed using logistic regression. Nested case-control and case-crossover designs were used to investigate associations with clinical outcomes; conditional logistic regression was used to estimate odds ratios ( OR ) with 95% CIs Adherence estimates (7728) were analyzed. Being female, younger, having more-severe disease, and living remotely were associated with higher adherence. Alcohol misuse was associated with lower adherence. The risk of ARF recurrence did not decrease until ≈40% of doses had been administered. Receiving <80% was associated with a 4-fold increase in the odds of ARF recurrence (case-control OR : 4.00 [95% CI : 1.7-9.29], case-crossover OR : 3.31 [95% CI : 1.09-10.07]) and appeared to be associated with increased all-cause mortality (case-control OR : 1.90 [95% CI : 0.89-4.06]; case-crossover OR 1.91 [95% CI : 0.51-7.12]). Conclusions We show for the first time that increased adherence to penicillin prophylaxis is associated with reduced ARF recurrence, and a likely reduction in mortality, in our setting. These findings can motivate patients to receive doses since even relatively low adherence can be beneficial, and additional doses further reduce adverse clinical outcomes.

A repeat audit of primary care management of group A streptococcal pharyngitis in Northland, New Zealand 2016.

INTRODUCTION One of the New Zealand Government's Better Public Services targets was to reduce the rate of acute rheumatic fever (ARF) nationally by two-thirds by 2017. Maori children and young people are disproportionately affected by ARF in the Northland District Health Board region. General practice contributes to ARF prevention in detecting and appropriately treating group A streptococcal (GAS) pharyngitis. An audit in 2012 suggested improvements in adherence to national guidelines were needed. AIM The aim was to reassess general practice adherence to national guidelines for the management of GAS pharyngitis in Northland, New Zealand, following implementation of the national Rheumatic Fever Prevention Programme. METHODS Throat swab and dispensing data were obtained and analysed for children and young people aged 3-20 years who attended general practice in Northland between 1 April and 31 July 2016 and had laboratory-proven GAS pharyngitis. RESULTS Between 2012 and 2016, the number of throat swabs carried out in general practice more than doubled, and amoxicillin was more commonly prescribed. The proportion of GAS pharyngitis patients in general practice not receiving recommended antibiotics, or receiving an inadequate length of treatment or no prescription, has not reduced. There are significant differences in the management of care for Maori and non-Maori patients, with much higher risk of ARF for Maori. Discussion The management of GAS pharyngitis by general practice in Northland remains substandard. Implicit bias may contribute to inequity. Focused engagement with identified subgroups of general practices and practitioners who disproportionately contribute to non-guideline prescribing should be further investigated.

Transition to adult care for Aboriginal children with rheumatic fever: a review informed by a focussed ethnography in northern Australia.

Aboriginal children in northern Australia have high rates of rheumatic fever and rheumatic heart disease, which are chronic conditions because of the need for long-term treatment and monitoring. This article critically reviews the literature on transition to adult care for children with chronic conditions and considers applicability to the care of these children. The review was merged with findings from a focussed ethnography conducted in four remote Aboriginal communities with young people who have these conditions. Transition care aims to support adolescents on a healthcare trajectory to facilitate best long-term health and personal outcomes. Characteristics of the two medical conditions, the children and their local health services in northern Australia were generalised and merged with principles from the transition care literature, including policies governing transition clinics in urban locations. In this setting, the challenge is to transition Aboriginal children safely through to adulthood without rheumatic heart damage rather than to a separate health service on reaching adulthood. Recommended tailoring of transition care involves engaging and valuing local navigators who can address language and cultural barriers to provide a sustainable alternative to transition coordinators in mainstream programs. This has potential to improve care without further burdening overstretched clinical resources.

Using preceding hospital admissions to identify children at risk of developing acute rheumatic fever.

AIMS: New Zealand (NZ) Maori and Pacific children have high rates of acute rheumatic fever (ARF). Around 150 new cases arise each year. As part of the national ARF prevention programme, funding is available to improve housing. To obtain maximum benefit from interventions, an effective tool is needed for targeting high-risk children. This study aimed to assess the effectiveness of using hospitalisations for identifying children at risk of subsequent ARF. METHODS: Three potentially avoidable hospitalisation (PAH) groups were investigated, including diseases thought to be influenced by housing. All were developed using expert opinion or systematic reviews. These were: (i) the PAH conditions associated with the housing environment (PAHHE) group; (ii) the Crowding group; and (iii) the Ministry of Health (MoH) group. We analysed NZ public hospital discharge data (2000-2014). The prevalence of ARF among patients hospitalised in each group was calculated to estimate sensitivity and potential effectiveness. The number needed to screen (NNS) to identify one ARF case was estimated as a measure of efficiency. RESULTS: Nearly one-third of ARF patients experienced a PAH as children (before developing ARF). Sensitivity for detecting future ARF ranged from <5% (MoH group) to 27% (PAHHE group). NNS ranged from 502.4 (PAHHE) to 707.5 (MoH). CONCLUSIONS: Because ARF is relatively rare, observing hospitalisations is not particularly efficient for targeting prevention activities for this condition alone. However, housing interventions are likely to improve multiple outcomes; thus, the hospital setting is still useful for identifying at-risk children who could benefit from such programmes.

Whanau perceptions and experiences of acute rheumatic fever diagnosis for Maori in Northland, New Zealand.

AIM: In New Zealand, acute rheumatic fever (ARF) remains a significant health problem with persistent ethnic inequities. Maori children 5-15 years of age in Northland have some of the highest ARF rates nationally. This study explored Maori whanau experiences of ARF, including pathways to primary healthcare and barriers and facilitators for diagnosis of ARF. METHODS: The study applied a qualitative kaupapa Maori approach including eight whanau, two individual interviews and participant observations with 36 participants. RESULTS: Barriers to accessing primary healthcare included: geographic distance, unavailability of appointments, cost, poor trust and rapport between health providers and whanau. Good rapport, communication and trust with health professionals facilitated utilisation of services. Barriers to diagnosis were lack of throat swabbing and inappropriate prescription of antibiotics. Access to primary care, having health professionals follow sore throat guidelines and trust in health professionals facilitated diagnosis. CONCLUSION: Health services could better support ARF diagnosis through the development of an effective quality improvement strategy for sore throat management, promoting free rapid response throat swabbing for high-risk populations, and exploring options of self-swabbing. Training and evaluation targeted at rapport building should also be established for health professionals to facilitate primary healthcare utilisation.

Estimating the risk of acute rheumatic fever in New Zealand by age, ethnicity and deprivation.

In New Zealand, efforts to control acute rheumatic fever (ARF) and its sequelae have focused on school-age children in the poorest socioeconomic areas; however, it is unclear whether this approach is optimal given the strong association with demographic risk factors other than deprivation, especially ethnicity. The aim of this study was to estimate the stratum-specific risk of ARF by key sociodemographic characteristics. We used hospitalization and disease notification data to identify new cases of ARF between 2010 and 2013, and used population count data from the 2013 New Zealand Census as our denominator. Poisson logistic regression methods were used to estimate stratum-specific risk of ARF development. The likelihood of ARF development varied considerably by age, ethnicity and deprivation strata: while risk was greatest in Maori and Pacific children aged 10-14 years residing in the most extreme deprivation, both of these ethnic groups experienced elevated risk across a wide age range and across deprivation levels. Interventions that target populations based on deprivation will include the highest-risk strata, but they will also (a) include groups with very low risk of ARF, such as non-Maori/non-Pacific children; and (b) exclude groups with moderate risk of ARF, such as Maori and Pacific individuals living outside high deprivation areas.

Are minor echocardiographic changes associated with an increased risk of acute rheumatic fever or progression to rheumatic heart disease?

BACKGROUND: The World Heart Federation criteria for the echocardiographic diagnosis of rheumatic heart disease (RHD) include a category "Borderline" RHD which may represent the earliest evidence of RHD. We aimed to determine the significance of minor heart valve abnormalities, including Borderline RHD, in predicting the future risk of acute rheumatic fever (ARF) or RHD. METHODS: A prospective cohort study of Aboriginal and Torres Strait Islander children aged 8 to 18 years was conducted. Cases comprised children with Borderline RHD or other minor non-specific valvular abnormalities (NSVAs) detected on prior echocardiography. Controls were children with a prior normal echocardiogram. Participants underwent a follow-up echocardiogram 2.5 to 5 years later to assess for progression of valvular changes and development of Definite RHD. Interval diagnoses of ARF were ascertained. RESULTS: There were 442 participants. Cases with Borderline RHD were at significantly greater risk of ARF (incidence rate ratio 8.8, 95% CI 1.4-53.8) and any echocardiographic progression of valve lesions (relative risk 8.19, 95% CI 2.43-27.53) than their Matched Controls. Cases with Borderline RHD were at increased risk of progression to Definite RHD (1 in 6 progressed) as were Cases with NSVAs (1 in 10 progressed). CONCLUSIONS: Children with Borderline RHD had an increased risk of ARF, progression of valvular lesions, and development of Definite RHD. These findings provide support for considering secondary antibiotic prophylaxis or ongoing surveillance echocardiography in high-risk children with Borderline RHD.

Acute rheumatic fever and rheumatic heart disease in the Kimberley: using hospitalisation data to find cases and describe trends.

OBJECTIVE: To describe the epidemiology of hospitalisations due to acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in the Kimberley region of Western Australia (WA) and use these data to improve completeness of the WA RHD Register. METHODS: Retrospective analysis of Kimberley regional hospitalisation data for hospitalisations coded as ARF/RHD from 01/07/2002 to 30/06/2012, with individual follow-up of those not on the register. Annual age-standardised hospitalisation rates were calculated to determine hospitalisation trend. RESULTS: There were 250 admissions among 193 individuals. Of these, 53 individuals (27%) with confirmed or probable ARF/RHD were not on the register. Males were less likely to be on the register (62% versus 79% of females, p<0.01), as were those hospitalised with ARF without heart involvement (68% versus 87% of other ARF diagnoses, p<0.01). ARF/RHD hospitalisation rates decreased by 8.8% per year (p<0.001, rate ratio = 0.91, 95%CI 0.87-0.96). CONCLUSIONS AND IMPLICATIONS: Using hospitalisation data is an effective method of identifying cases of ARF/RHD not currently on the register. This process could be undertaken for initial case finding in areas with newly established registers, or as regular quality assurance in areas with established register-based programs. Reasons for the observed decrease in hospitalisation rates remain unclear and warrant further investigation.

Acute rheumatic fever in First Nations communities in northwestern Ontario: Social determinants of health "bite the heart".

OBJECTIVE: To document a case series of 8 young First Nations patients diagnosed with acute rheumatic fever (ARF), a preventable disease that resulted in the death of 2 patients, in northwestern Ontario in the context of late diagnosis, overcrowded housing, and inadequate public health response. DESIGN: Retrospective case series over an 18-month period. SETTING: Remote First Nations communities in northwestern Ontario. PARTICIPANTS: Eight patients with ARF. MAIN OUTCOME MEASURES: Incidence, mortality, residual rheumatic heart disease, time to diagnosis, barriers to diagnosis and treatment, housing situation of patients, patient demographic characteristics (age, sex), and investigation results. RESULTS: The incidence of ARF in this population was 21.3 per 100,000, which is 75 times greater than the overall Canadian estimated incidence. The average patient age was 9.4 years. Most cases developed joint findings, and 5 of the surviving patients had rheumatic heart disease when they received echocardiography. The average time to diagnosis was 88 days. Two 4-year-old children died from ARF. Most patients lived in inadequate and crowded housing. CONCLUSION: This rare disease still exists in remote First Nations communities. These communities demonstrate an incidence equal to that in aboriginal communities in Australia and New Zealand, which have among the highest international incidence of ARF. Primordial prevention, including improved on-reserve housing, is urgently needed. Case detection and ongoing surveillance for primary and secondary prophylaxis requires a well resourced regional strategy.

Primary care management of group A streptococcal pharyngitis in Northland.

INTRODUCTION: Reducing the rate of acute rheumatic fever nationally by two-thirds by 2017 is a New Zealand Ministry of Health priority. Northland District Health Board (DHB) has high rates of rheumatic fever, disproportionately impacting on Maori children and young people. School-based programmes and general practice both contribute to rheumatic fever prevention in detecting and appropriately treating group A streptococcal (GAS) pharyngitis. AIM: The aim of this study was to assess adherence by general practitioners and school-based sore throat programmes to national guidelines for the management of GAS pharyngitis in Northland. METHODS: Laboratory and pharmaceutical data were obtained for children and young people aged 3-20 years who had GAS positive throat swabs in Northland laboratory services between 1 April and 31 July 2012. Data were analysed separately for general practice and the school programmes for rheumatic fever prevention. RESULTS: One in five of those children presenting to general practice with a positive throat swab and complete prescription data did not receive treatment according to national guidelines, while appropriate treatment was offered to more than 98% of children accessing school-based programmes. A significant proportion of those seen in general practice received antibiotics not recommended by guidelines, an inadequate length of treatment or no prescription. There were no significant differences in the management of Maori and non-Maori children. DISCUSSION: There is room for improvement in general practice management of GAS pharyngitis in Northland. School-based management of sore throat provides high-quality management for children at high risk of rheumatic fever.