Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

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... Sabry Eissa Royal Free and University College London Medical School, University College London, United Kingdom Abstract Objective: To assess specific performance indicators relating to a register-based acute rheumatic fever and rheumatic heart disease (ARF/RHD) prevention program in a remote Australian Aboriginal community in order to identify the most appropriate avenues for improvements in delivery of services. Rosemary Lee Remote Services, Department of Aerial Medical Services, Northern Territory Philippa Binns Centre for Disease Control and Environmental Health, Northern Territory and National Centre for Epidemiology and Population Health, Australian National University, Australian Capital Territory Methods: Information kept on the central ARF/RHD register was compared with an amalgamated dataset from three other sources. The community clinic charts of identified patients were reviewed for information regarding accuracy of diagnosis and the number of doses of benzathine penicillin received in the last year. Specific follow-up arrangements were assessed and compared with practice guidelines. Gaynor Garstone Department of Health and Community Services, Northern Territory Malcolm McDonald Menzies School of Health Research, Charles Darwin University, Northern Territory 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.6 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.11,12 A 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 Results: The central ARF/RHD register contained the names of 58 of the 72 (81%) people identified in the community as eligible for inclusion. Only 42% (22/52) of people receiving antibiotic prophylaxis had received 80% or more of the recommended doses in the previous year; service delivery was significantly better for females than males (p=0.004). Individuals in priority category 1 (most severe disease) were found to be receiving follow-up and investigation according to guidelines. About half the people in categories 2 (moderate disease) and 3 (mild disease) had been inadequately investigated and/or missed out on follow-up appointments. Conclusions: The ARF/RHD prevention program in this large remote Aboriginal community is struggling to deliver services to a substantial proportion of people who require them. Specific interventions, especially those related to men’s health, may be required to correct the problems. (Aust N Z J Public Health 2005; 29: 521-5) Correspondence to: Dr Malcolm McDonald, PO Box 41096, Casuarina, Northern Territory 0811. Fax: (08) 8922 7876; e-mail: malcolm@menzies.edu.au Submitted: January 2005 Revision requested: May 2005 Accepted: July 2005 2005 VOL. 29 NO. 6 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Eissa et al. Article of the patient’s name, age and community plus diagnoses, recommended dates for specialist clinical review and echocardiography, and a record of prophylaxis delivery. Patients are given a priority category according to the severity of disease as recommended by a protocol provided to all clinicians in the region14 (see Table 1). Each clinic keeps additional records of service delivery (including the number of doses of penicillin given in the last 12 months) in patient charts. Management guidelines Table 1: ARF/RHD register: example of priority-based guidelines.a Priority 1 – Severe disease Established RHD with any of: • Any valvular lesion that is severe. • Any valvular lesion that is moderate to severe where left ventricular (LV) function is impaired OR where LV size is increased. • Any valvular lesion that is moderate to severe where there is shortness of breath, tiredness, oedema, angina or syncope. • A history of bio-prosthetic valve replacement (porcine or homograft), valve repair or metallic prosthetic valve replacement (until stabilised). Management: • Management by a cardiologist and consideration for valve surgery. Paediatric patients should be reviewed by a paediatric cardiologist. • All patients should be reviewed every six months by a specialist physician or paediatrician. Priority 2 – Moderate disease Established RHD with any of: • Any valvular lesion that is moderate, providing there are no symptoms and left ventricular function is normal. • Metallic prosthetic valves once stable following surgery. • A child or adolescent with a history of chorea until 18 years old, even if there is no valve damage (>50% will subsequently develop valve disease). Management: • Managed by primary care doctor with review by specialist physician/paediatrician every year (or earlier if clinical deterioration) or within three months of hospital discharge following any episode of confirmed or suspected ARF. • Usually require echocardiogram every year (children) or two years (adults) to assess valve lesion severity and LV function. Priority 3 – Mild disease RHD or ARF: • Any valvular lesion that is trivial to mild. • History of ARF with no evidence of RHD. Management: • Managed by primary care doctor unless clinical deterioration. Children and adolescents up to 18 years should be reviewed every year by a specialist physician/paediatrician. • Echocardiogram every two years (children) or five years (adults, no recent ARF). • Any new diagnosis of ARF always requires specialist physician/ paediatrician follow-up within three months of hospital discharge to assess progress. • Specialist physician review before ceasing secondary prophylaxis. Note: (a) Adapted with permission from the Northern Territory Rheumatic Heart Disease Register, 2003.14 These guidelines were developed for populations with access to specialist services, echocardiography and cardiac surgery. They may need to be adapted accordingly in populations without such access. for ARF/RHD are widely circulated by the NT Centre for Disease Control and Environmental Health and are included in the Standard Treatment Manual of the Central Australian Rural Practitioners Association (CARPA) 2003 that is used in most remote clinics. The Top End ARF/RHD central register has now acquired close to 1,300 names9 and is in the process of undergoing an evaluation. At the same time, it was decided to carry out a separate assessment of specific aspects of the program in one remote Aboriginal community with high rates of disease. The questions used to guide this assessment were as follows: • How accurate is the register with regard to this community? How well does it correlate with other known databases? • Are patients in this community receiving adequate antibiotic prophylaxis according to the program’s guidelines? • Are proper arrangements being made and recorded for clinical follow-up and echocardiography? • Are patients with ARF/RHD getting to these follow-up appointments? Methods The Aboriginal community (population approximately 2,500) was chosen because of its high incidence of ARF, about 650 per 100,000 (unpublished data from the ARF/RHD register). It was accessible by road (for eight months of the year) and air. The community clinic had a chronic diseases co-ordinator who had been given responsibility for local administration of the ARF/RHD prevention program, among many other tasks. At the time of the study, there were four other female registered nurses and one female Aboriginal Health Worker. Although regarded as one of the busiest clinics in the NT, there was no medical officer resident in the community. Data on the central ARF/RHD register are updated and a hard copy provided to each clinic every four months. It is used to guide the local secondary prevention program. The list provided in August 2004 was compared with an amalgamated list extracted from the three other known databases where information regarding patients with ARF/RHD was kept. These were: 1. The Chronic Diseases Register (CDR). This contains details of patients with chronic medical conditions in rural and remote communities in the Top End. It is compiled by the district medical officers (DMO) of Remote Health and Community Services. Relevant diagnoses are recorded by the DMO together with progress and review dates. 2. The database of the NT Cardiac Services. It holds information on individuals who are high risk (priority 1) and supervised by the cardiologists. NT Cardiac Services also keeps records of all echocardiograms done in the Top End. 3. Hospital separation lists from the Royal Darwin Hospital. The clinical files of patients with possible ARF/RHD, identified by any of the sources, were reviewed in the community clinic. We specifically sought patients diagnosed with ARF/RHD who, for one reason or another, had not been included on the register. For patients already on the register, the diagnosis of ARF/RHD was 2005 VOL. 29 NO. 6 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Outbreaks! Assessment of a rheumatic heart disease program checked against the other databases. We checked that patients were still required to be on the register, according to the inclusion criteria, and still resident in the community. Delivery of antibiotic prophylaxis was assessed by comparing the number of injections of benzathine penicillin received by people with known ARF/RHD against the recommended number of doses over the previous 12 months. The assigned priority of each patient listed on the register was also checked against published priority recommendations (see Table 1).14 Clinic records and the central register were examined to ascertain whether appropriate followup and echocardiogram appointments had been made and kept. All data were stored in a confidential computerised database and statistical analysis was done using Microsoft Excel and SPSS (12.0) software. Delivery of antibiotic prophylaxis Of the 72 people identified from all sources as having ARF/ RHD, 52 were receiving benzathine penicillin prophylaxis (15 male, 37 female) (see Table 2). Ideally, prophylaxis comprises intramuscular injections at 3-4 weekly intervals; in practice, most people in remote communities receive monthly injections because of resource limitations. Of the individuals in this community who were not on the prophylaxis list, none were deemed in need of it. Two individuals continued to receive prophylaxis despite the clinical decision to cease and a further three were due to cease treatment, having taken prophylaxis for more than 10 years. The median number of doses received over the previous 12 months was nine (see Table 2). The number receiving at least 80% of the minimum doses was 22 (42%). Females were significantly more likely to receive treatment than males (p=0.004 by the SPSS mixed linear model) (see Figure 1), although there is a marked under-representation of males in priority groups 1 and 2 (3/17, 17.6%) with a higher adherence rate (median doses 10/year) as compared with priority group 3 (males 12/35, 34.3% with a median dose 8/year). Results Accuracy of the central ARF/RHD register There were 63 people listed for the community on the central ARF/RHD register. Five were found to have left the community. The other three databases identified 92 people as possibly being eligible for inclusion on the ARF/RHD register and their records were examined in more detail. Of these, 20 were excluded because they did not fulfil the inclusion criteria (three people), had an alternative diagnosis (nine) or no longer resided in the community (eight). Fifty-eight people confirmed to have ARF/RHD were included on both the central RHD register and the amalgamated list. An extra 14 individuals identified from the amalgamated list, whose clinical features met the diagnostic criteria for ARF/RHD and were resident in the community, were found to be missing from the register. Ten of these were found on the CDR only, two on the hospital separation list only and two on both CDR and hospital separation list. No additional cases were identified through the NT Cardiac Services database. If the final amalgamated list is considered the gold standard, the central ARF/RHD register had a sensitivity of 81% (58/72, male=23 and female=49). Ninety-three per cent of patients listed on the central register for the community had been included appropriately. Once non-residents were excluded, the positive predictive value of the register was 100% (58/58). No one with severe RHD (priority 1 category) was missing. Table 2: Community delivery rates of benzathine penicillin. Priority 1 Priority 2 Priority 3 Total Number of patients identified (male) Number documented to be receiving prophylaxis (male) Median number of doses received in the previous 12 monthsa 7 (2) 7 (2) 14 (3) 10 (1) 51 (18) 35 (12) 72 (23) Follow-up Follow-up and echocardiograph information is presented in Table 3. According to clinic records, 15 patients with a diagnosis of ARF/RHD (as per the inclusion criteria) had never seen a DMO, and one was found never to have seen any clinician in the community. Seven of 14 (50%) people in category 3 under 18 years of age had echocardiography done in the last two years. The guidelines recommend an echocardiogram every two years for these patients. Less than 50% of adults in category 3 had echocardiography in the past five years; the guidelines recommend a minimum of five years between echocardiograms. No evidence of any previous echocardiographic investigation could be found in 12 individuals (two in category 2 and 10 in category 3) and two of these (both in category 3) had also never seen the DMO. Of the 43 individuals who had documented cardiology assessments, 14 had the next recommended review date stated in the chart or on the register; these were mainly patients in the priority 1 category and individuals with specific entries by cardiologists in their clinical notes. The priority guidelines do not necessarily Figure 1: Stem and leaf plots showing the difference between prophylaxis delivery rates to females (n=37) and males (n=15); number of dose of benzathine penicillin in previous 12 months Females 52 (15) Stem 0 1 Leaf 044667888888899999 0000011111111122222 Males Stem 0 1 Leaf 001455677788 022 Note: (a) The minimum recommended number of doses is 13 injections in 12 months, whereas 12 in 12 months is customary in many places for practical reasons. 2005 VOL. 29 NO. 6 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Eissa et al. Article stipulate when priority 2 or 3 patients should be seen by a cardiologist. Nevertheless, six of the 14 were found to be overdue for their review dates, as stated in the register list. Similarly, of the 58 who had documented physician/paediatrician consultations, the latest required date for the next review could be determined in 35, 11 (31%) of which were overdue. Twenty-six (44%) of the 59 individuals requiring echocardiography were also found to be overdue according to scheduled minimum review dates. Discussion A register-based secondary prevention program is an effective health intervention for controlling and eventually preventing recurrent ARF and RHD in high-incidence settings.3 The role of such a program is to facilitate provision of antibiotic prophylaxis to people diagnosed with ARF/RHD, to monitor service delivery, to assist co-ordination of ongoing care and to provide useful epidemiological information.15-17 The effectiveness of a registerbased program depends on the accuracy of the database, how well it is maintained and how well the information is disseminated.18 This assessment targets certain aspects of the prevention program in a remote Top End Aboriginal community; it examines the accuracy of the ARF/RHD register when compared with other sources of information, the delivery of antibiotic prophylaxis and patient follow-up. The aim is to identify ways in which the program and register can be improved. A register-based program is of greatest value if the register contains accurate information on a high proportion of affected people in the community.12,19 The central ARF/RHD register in the Top End contained the names of just over 80% of people with identified ARF/RHD in this community. Thus, there is room for improvement and this could come from a more active process of regular cross-checking with other known databases. Other possible reasons for incomplete register data include difficulties with diagnosis, failure of clinicians to notify new cases and high turnover of health personnel. These are more difficult to address.15,16,20 Likewise, regular cross-checking of the register with local clinic information may reduce the number of people who are inappropriately listed and perhaps receiving unnecessary treatment. Table 3: Clinical reviews according to the priority guideline recommendations. Priority 1 Priority 2 Priority 3 n=7 n=14 n=51 Cardiology review (within last six months for Priority 1 & last 2 years for Priority 2) Paediatrician/physician review in the previous 12 months District medical officer review in the previous two years Echocardiogram according to guidelines Notes: (a) Of 14 patients <18 years. – 11a 25 7a However, as with most disease registers around the world, the limiting factor is adequate and sustained financial support and staff resources.12,21 The fact that all high-risk individuals in the community (priority category 1) were included in the prevention program and on the register is some comfort. It is of concern that just over 40% of the population with known ARF/RHD in the community received 80% or more of the minimum recommended doses of benzathine penicillin, a rate considered by some Australian authors to be the benchmark.22 A study by Mincham and others in Aboriginal communities of the Kimberley region of Western Australia also found that less than half of those prescribed monthly penicillin injections received eight or more injections in the previous year.23 This is in contrast to experience in other high-incidence settings such as northern India where, in one large study, more than 90% of patients missed no more than one monthly injection per year over seven years and recurrent ARF was almost eliminated.24 It should be noted that several Aboriginal communities in the Top End do achieve similar high rates of treatment delivery (unpublished data from the ARF/ RHD register). Possible reasons for inadequate coverage in this Aboriginal community include population mobility, insufficient community and health staff education about ARF/RHD, the quite justified fear of the painful injections and lack (or perceived lack) of access for some patients to health services. One factor noted by the authors was a shortage of nursing staff and Aboriginal Health Workers in the clinic; the chronic disease co-ordinator was obliged to devote most of her energies to acute medical problems and had little time for prevention programs and accompanying documentation. 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. Another measure that may improve treatment delivery is a better Territory-wide system to advise communities when patients on ARF/RHD prophylaxis are discharged from hospital or travel from one place to another so that the new community can effectively take over care without delay. Health information sometimes travels unreliably in the Top End.26 One of the most important findings is the apparent disparity in delivery of antibiotic prophylaxis for men and women. In this study, the female-to-male ratio of patients recognised to have ARF/RHD is high at 2.1 (female) to 1 (male). A female preponderance of ARF/RHD been noted before in the Top End27 and the effect is possibly amplified by reduced access of males to local health services for diagnosis and treatment. If clinic file space is any measure of clinic access/service delivery, we noted that the space taken up by clinic files for adolescent and adult females outstrips that for males by a ratio of three to one (18 shelves versus six shelves), whereas the shelf space is equal for males and females of five years or less. It is likely that some young women with 2005 VOL. 29 NO. 6 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Outbreaks! Assessment of a rheumatic heart disease program RHD were identified through the antenatal clinic, but the actual proportion was not recorded in this study. It has been noted elsewhere that Aboriginal men have unacceptably poor clinical outcomes for a whole range of cardiac and other diseases.28,29 The reasons are complex and relate to alienation from health services, lack of male health professionals in communities, perceptions of disease and language barriers. In this setting, it would be beneficial to target men with ARF/RHD for antibiotic prophylaxis and education, perhaps by allocating specific resources and responsibilities to male Aboriginal Health Workers. In addition, the clinic does not have a separate men’s area or entrance, a basic structural problem that is to be addressed in the near future. Follow-up has always been problematic. Organising visiting specialist appointments in the community, and ensuring patients keep them, is difficult enough. Arranging specialist appointments and investigations in Darwin, together with air transport and accommodation, is much more time-consuming and complicated. A visit to a busy city and a large tertiary hospital is a confronting and confusing experience for many people from remote communities;30 it is not surprising that arrangements often come undone. To assist with follow-up, it is recommended that, as far as possible, the specialist and the specialist services (such as echocardiography) come to the community on a regular basis. Renewed efforts by health staff can then be targeted at the local level. In summary, this study found significant shortfalls in delivery of penicillin prophylaxis and follow-up of patients in one remote Aboriginal community. Experience elsewhere indicates that recurrent ARF and RHD can be prevented through properly run secondary prevention programs with good case management. Adequate and sustainable funding is required for administration of the central program and register; resources should also be provided at the community level so that the program co-ordinator is not diverted from his/her stated duties. Additional measures may be required to ensure delivery of services to males. We recommend that appropriate specialist services, including echocardiography, be made more available on a regular basis at a local level. Without these interventions, it is unlikely that ARF/ RHD management can be improved beyond that documented here. Acknowledgements Our thanks to Kay McGough, Dr Keith Edwards, the clinic staff at the Aboriginal community, the Department of Aerial Medical Services, NT, and NT Cardiac Services for their assistance and advice. Malcolm McDonald is funded by a grant from the Heart Foundation of Australia. Otherwise, the authors have no conflict of interest. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australian and New Zealand Journal of Public Health Wiley

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

Loading next page...
 
/lp/wiley/assessment-of-a-register-based-rheumatic-heart-disease-secondary-JY9Wjhxedg

References (32)

Publisher
Wiley
Copyright
Copyright © 2005 Wiley Subscription Services, Inc., A Wiley Company
ISSN
1326-0200
eISSN
1753-6405
DOI
10.1111/j.1467-842X.2005.tb00243.x
Publisher site
See Article on Publisher Site

Abstract

Sabry Eissa Royal Free and University College London Medical School, University College London, United Kingdom Abstract Objective: To assess specific performance indicators relating to a register-based acute rheumatic fever and rheumatic heart disease (ARF/RHD) prevention program in a remote Australian Aboriginal community in order to identify the most appropriate avenues for improvements in delivery of services. Rosemary Lee Remote Services, Department of Aerial Medical Services, Northern Territory Philippa Binns Centre for Disease Control and Environmental Health, Northern Territory and National Centre for Epidemiology and Population Health, Australian National University, Australian Capital Territory Methods: Information kept on the central ARF/RHD register was compared with an amalgamated dataset from three other sources. The community clinic charts of identified patients were reviewed for information regarding accuracy of diagnosis and the number of doses of benzathine penicillin received in the last year. Specific follow-up arrangements were assessed and compared with practice guidelines. Gaynor Garstone Department of Health and Community Services, Northern Territory Malcolm McDonald Menzies School of Health Research, Charles Darwin University, Northern Territory 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.6 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.11,12 A 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 Results: The central ARF/RHD register contained the names of 58 of the 72 (81%) people identified in the community as eligible for inclusion. Only 42% (22/52) of people receiving antibiotic prophylaxis had received 80% or more of the recommended doses in the previous year; service delivery was significantly better for females than males (p=0.004). Individuals in priority category 1 (most severe disease) were found to be receiving follow-up and investigation according to guidelines. About half the people in categories 2 (moderate disease) and 3 (mild disease) had been inadequately investigated and/or missed out on follow-up appointments. Conclusions: The ARF/RHD prevention program in this large remote Aboriginal community is struggling to deliver services to a substantial proportion of people who require them. Specific interventions, especially those related to men’s health, may be required to correct the problems. (Aust N Z J Public Health 2005; 29: 521-5) Correspondence to: Dr Malcolm McDonald, PO Box 41096, Casuarina, Northern Territory 0811. Fax: (08) 8922 7876; e-mail: malcolm@menzies.edu.au Submitted: January 2005 Revision requested: May 2005 Accepted: July 2005 2005 VOL. 29 NO. 6 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Eissa et al. Article of the patient’s name, age and community plus diagnoses, recommended dates for specialist clinical review and echocardiography, and a record of prophylaxis delivery. Patients are given a priority category according to the severity of disease as recommended by a protocol provided to all clinicians in the region14 (see Table 1). Each clinic keeps additional records of service delivery (including the number of doses of penicillin given in the last 12 months) in patient charts. Management guidelines Table 1: ARF/RHD register: example of priority-based guidelines.a Priority 1 – Severe disease Established RHD with any of: • Any valvular lesion that is severe. • Any valvular lesion that is moderate to severe where left ventricular (LV) function is impaired OR where LV size is increased. • Any valvular lesion that is moderate to severe where there is shortness of breath, tiredness, oedema, angina or syncope. • A history of bio-prosthetic valve replacement (porcine or homograft), valve repair or metallic prosthetic valve replacement (until stabilised). Management: • Management by a cardiologist and consideration for valve surgery. Paediatric patients should be reviewed by a paediatric cardiologist. • All patients should be reviewed every six months by a specialist physician or paediatrician. Priority 2 – Moderate disease Established RHD with any of: • Any valvular lesion that is moderate, providing there are no symptoms and left ventricular function is normal. • Metallic prosthetic valves once stable following surgery. • A child or adolescent with a history of chorea until 18 years old, even if there is no valve damage (>50% will subsequently develop valve disease). Management: • Managed by primary care doctor with review by specialist physician/paediatrician every year (or earlier if clinical deterioration) or within three months of hospital discharge following any episode of confirmed or suspected ARF. • Usually require echocardiogram every year (children) or two years (adults) to assess valve lesion severity and LV function. Priority 3 – Mild disease RHD or ARF: • Any valvular lesion that is trivial to mild. • History of ARF with no evidence of RHD. Management: • Managed by primary care doctor unless clinical deterioration. Children and adolescents up to 18 years should be reviewed every year by a specialist physician/paediatrician. • Echocardiogram every two years (children) or five years (adults, no recent ARF). • Any new diagnosis of ARF always requires specialist physician/ paediatrician follow-up within three months of hospital discharge to assess progress. • Specialist physician review before ceasing secondary prophylaxis. Note: (a) Adapted with permission from the Northern Territory Rheumatic Heart Disease Register, 2003.14 These guidelines were developed for populations with access to specialist services, echocardiography and cardiac surgery. They may need to be adapted accordingly in populations without such access. for ARF/RHD are widely circulated by the NT Centre for Disease Control and Environmental Health and are included in the Standard Treatment Manual of the Central Australian Rural Practitioners Association (CARPA) 2003 that is used in most remote clinics. The Top End ARF/RHD central register has now acquired close to 1,300 names9 and is in the process of undergoing an evaluation. At the same time, it was decided to carry out a separate assessment of specific aspects of the program in one remote Aboriginal community with high rates of disease. The questions used to guide this assessment were as follows: • How accurate is the register with regard to this community? How well does it correlate with other known databases? • Are patients in this community receiving adequate antibiotic prophylaxis according to the program’s guidelines? • Are proper arrangements being made and recorded for clinical follow-up and echocardiography? • Are patients with ARF/RHD getting to these follow-up appointments? Methods The Aboriginal community (population approximately 2,500) was chosen because of its high incidence of ARF, about 650 per 100,000 (unpublished data from the ARF/RHD register). It was accessible by road (for eight months of the year) and air. The community clinic had a chronic diseases co-ordinator who had been given responsibility for local administration of the ARF/RHD prevention program, among many other tasks. At the time of the study, there were four other female registered nurses and one female Aboriginal Health Worker. Although regarded as one of the busiest clinics in the NT, there was no medical officer resident in the community. Data on the central ARF/RHD register are updated and a hard copy provided to each clinic every four months. It is used to guide the local secondary prevention program. The list provided in August 2004 was compared with an amalgamated list extracted from the three other known databases where information regarding patients with ARF/RHD was kept. These were: 1. The Chronic Diseases Register (CDR). This contains details of patients with chronic medical conditions in rural and remote communities in the Top End. It is compiled by the district medical officers (DMO) of Remote Health and Community Services. Relevant diagnoses are recorded by the DMO together with progress and review dates. 2. The database of the NT Cardiac Services. It holds information on individuals who are high risk (priority 1) and supervised by the cardiologists. NT Cardiac Services also keeps records of all echocardiograms done in the Top End. 3. Hospital separation lists from the Royal Darwin Hospital. The clinical files of patients with possible ARF/RHD, identified by any of the sources, were reviewed in the community clinic. We specifically sought patients diagnosed with ARF/RHD who, for one reason or another, had not been included on the register. For patients already on the register, the diagnosis of ARF/RHD was 2005 VOL. 29 NO. 6 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Outbreaks! Assessment of a rheumatic heart disease program checked against the other databases. We checked that patients were still required to be on the register, according to the inclusion criteria, and still resident in the community. Delivery of antibiotic prophylaxis was assessed by comparing the number of injections of benzathine penicillin received by people with known ARF/RHD against the recommended number of doses over the previous 12 months. The assigned priority of each patient listed on the register was also checked against published priority recommendations (see Table 1).14 Clinic records and the central register were examined to ascertain whether appropriate followup and echocardiogram appointments had been made and kept. All data were stored in a confidential computerised database and statistical analysis was done using Microsoft Excel and SPSS (12.0) software. Delivery of antibiotic prophylaxis Of the 72 people identified from all sources as having ARF/ RHD, 52 were receiving benzathine penicillin prophylaxis (15 male, 37 female) (see Table 2). Ideally, prophylaxis comprises intramuscular injections at 3-4 weekly intervals; in practice, most people in remote communities receive monthly injections because of resource limitations. Of the individuals in this community who were not on the prophylaxis list, none were deemed in need of it. Two individuals continued to receive prophylaxis despite the clinical decision to cease and a further three were due to cease treatment, having taken prophylaxis for more than 10 years. The median number of doses received over the previous 12 months was nine (see Table 2). The number receiving at least 80% of the minimum doses was 22 (42%). Females were significantly more likely to receive treatment than males (p=0.004 by the SPSS mixed linear model) (see Figure 1), although there is a marked under-representation of males in priority groups 1 and 2 (3/17, 17.6%) with a higher adherence rate (median doses 10/year) as compared with priority group 3 (males 12/35, 34.3% with a median dose 8/year). Results Accuracy of the central ARF/RHD register There were 63 people listed for the community on the central ARF/RHD register. Five were found to have left the community. The other three databases identified 92 people as possibly being eligible for inclusion on the ARF/RHD register and their records were examined in more detail. Of these, 20 were excluded because they did not fulfil the inclusion criteria (three people), had an alternative diagnosis (nine) or no longer resided in the community (eight). Fifty-eight people confirmed to have ARF/RHD were included on both the central RHD register and the amalgamated list. An extra 14 individuals identified from the amalgamated list, whose clinical features met the diagnostic criteria for ARF/RHD and were resident in the community, were found to be missing from the register. Ten of these were found on the CDR only, two on the hospital separation list only and two on both CDR and hospital separation list. No additional cases were identified through the NT Cardiac Services database. If the final amalgamated list is considered the gold standard, the central ARF/RHD register had a sensitivity of 81% (58/72, male=23 and female=49). Ninety-three per cent of patients listed on the central register for the community had been included appropriately. Once non-residents were excluded, the positive predictive value of the register was 100% (58/58). No one with severe RHD (priority 1 category) was missing. Table 2: Community delivery rates of benzathine penicillin. Priority 1 Priority 2 Priority 3 Total Number of patients identified (male) Number documented to be receiving prophylaxis (male) Median number of doses received in the previous 12 monthsa 7 (2) 7 (2) 14 (3) 10 (1) 51 (18) 35 (12) 72 (23) Follow-up Follow-up and echocardiograph information is presented in Table 3. According to clinic records, 15 patients with a diagnosis of ARF/RHD (as per the inclusion criteria) had never seen a DMO, and one was found never to have seen any clinician in the community. Seven of 14 (50%) people in category 3 under 18 years of age had echocardiography done in the last two years. The guidelines recommend an echocardiogram every two years for these patients. Less than 50% of adults in category 3 had echocardiography in the past five years; the guidelines recommend a minimum of five years between echocardiograms. No evidence of any previous echocardiographic investigation could be found in 12 individuals (two in category 2 and 10 in category 3) and two of these (both in category 3) had also never seen the DMO. Of the 43 individuals who had documented cardiology assessments, 14 had the next recommended review date stated in the chart or on the register; these were mainly patients in the priority 1 category and individuals with specific entries by cardiologists in their clinical notes. The priority guidelines do not necessarily Figure 1: Stem and leaf plots showing the difference between prophylaxis delivery rates to females (n=37) and males (n=15); number of dose of benzathine penicillin in previous 12 months Females 52 (15) Stem 0 1 Leaf 044667888888899999 0000011111111122222 Males Stem 0 1 Leaf 001455677788 022 Note: (a) The minimum recommended number of doses is 13 injections in 12 months, whereas 12 in 12 months is customary in many places for practical reasons. 2005 VOL. 29 NO. 6 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Eissa et al. Article stipulate when priority 2 or 3 patients should be seen by a cardiologist. Nevertheless, six of the 14 were found to be overdue for their review dates, as stated in the register list. Similarly, of the 58 who had documented physician/paediatrician consultations, the latest required date for the next review could be determined in 35, 11 (31%) of which were overdue. Twenty-six (44%) of the 59 individuals requiring echocardiography were also found to be overdue according to scheduled minimum review dates. Discussion A register-based secondary prevention program is an effective health intervention for controlling and eventually preventing recurrent ARF and RHD in high-incidence settings.3 The role of such a program is to facilitate provision of antibiotic prophylaxis to people diagnosed with ARF/RHD, to monitor service delivery, to assist co-ordination of ongoing care and to provide useful epidemiological information.15-17 The effectiveness of a registerbased program depends on the accuracy of the database, how well it is maintained and how well the information is disseminated.18 This assessment targets certain aspects of the prevention program in a remote Top End Aboriginal community; it examines the accuracy of the ARF/RHD register when compared with other sources of information, the delivery of antibiotic prophylaxis and patient follow-up. The aim is to identify ways in which the program and register can be improved. A register-based program is of greatest value if the register contains accurate information on a high proportion of affected people in the community.12,19 The central ARF/RHD register in the Top End contained the names of just over 80% of people with identified ARF/RHD in this community. Thus, there is room for improvement and this could come from a more active process of regular cross-checking with other known databases. Other possible reasons for incomplete register data include difficulties with diagnosis, failure of clinicians to notify new cases and high turnover of health personnel. These are more difficult to address.15,16,20 Likewise, regular cross-checking of the register with local clinic information may reduce the number of people who are inappropriately listed and perhaps receiving unnecessary treatment. Table 3: Clinical reviews according to the priority guideline recommendations. Priority 1 Priority 2 Priority 3 n=7 n=14 n=51 Cardiology review (within last six months for Priority 1 & last 2 years for Priority 2) Paediatrician/physician review in the previous 12 months District medical officer review in the previous two years Echocardiogram according to guidelines Notes: (a) Of 14 patients <18 years. – 11a 25 7a However, as with most disease registers around the world, the limiting factor is adequate and sustained financial support and staff resources.12,21 The fact that all high-risk individuals in the community (priority category 1) were included in the prevention program and on the register is some comfort. It is of concern that just over 40% of the population with known ARF/RHD in the community received 80% or more of the minimum recommended doses of benzathine penicillin, a rate considered by some Australian authors to be the benchmark.22 A study by Mincham and others in Aboriginal communities of the Kimberley region of Western Australia also found that less than half of those prescribed monthly penicillin injections received eight or more injections in the previous year.23 This is in contrast to experience in other high-incidence settings such as northern India where, in one large study, more than 90% of patients missed no more than one monthly injection per year over seven years and recurrent ARF was almost eliminated.24 It should be noted that several Aboriginal communities in the Top End do achieve similar high rates of treatment delivery (unpublished data from the ARF/ RHD register). Possible reasons for inadequate coverage in this Aboriginal community include population mobility, insufficient community and health staff education about ARF/RHD, the quite justified fear of the painful injections and lack (or perceived lack) of access for some patients to health services. One factor noted by the authors was a shortage of nursing staff and Aboriginal Health Workers in the clinic; the chronic disease co-ordinator was obliged to devote most of her energies to acute medical problems and had little time for prevention programs and accompanying documentation. 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. Another measure that may improve treatment delivery is a better Territory-wide system to advise communities when patients on ARF/RHD prophylaxis are discharged from hospital or travel from one place to another so that the new community can effectively take over care without delay. Health information sometimes travels unreliably in the Top End.26 One of the most important findings is the apparent disparity in delivery of antibiotic prophylaxis for men and women. In this study, the female-to-male ratio of patients recognised to have ARF/RHD is high at 2.1 (female) to 1 (male). A female preponderance of ARF/RHD been noted before in the Top End27 and the effect is possibly amplified by reduced access of males to local health services for diagnosis and treatment. If clinic file space is any measure of clinic access/service delivery, we noted that the space taken up by clinic files for adolescent and adult females outstrips that for males by a ratio of three to one (18 shelves versus six shelves), whereas the shelf space is equal for males and females of five years or less. It is likely that some young women with 2005 VOL. 29 NO. 6 AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Outbreaks! Assessment of a rheumatic heart disease program RHD were identified through the antenatal clinic, but the actual proportion was not recorded in this study. It has been noted elsewhere that Aboriginal men have unacceptably poor clinical outcomes for a whole range of cardiac and other diseases.28,29 The reasons are complex and relate to alienation from health services, lack of male health professionals in communities, perceptions of disease and language barriers. In this setting, it would be beneficial to target men with ARF/RHD for antibiotic prophylaxis and education, perhaps by allocating specific resources and responsibilities to male Aboriginal Health Workers. In addition, the clinic does not have a separate men’s area or entrance, a basic structural problem that is to be addressed in the near future. Follow-up has always been problematic. Organising visiting specialist appointments in the community, and ensuring patients keep them, is difficult enough. Arranging specialist appointments and investigations in Darwin, together with air transport and accommodation, is much more time-consuming and complicated. A visit to a busy city and a large tertiary hospital is a confronting and confusing experience for many people from remote communities;30 it is not surprising that arrangements often come undone. To assist with follow-up, it is recommended that, as far as possible, the specialist and the specialist services (such as echocardiography) come to the community on a regular basis. Renewed efforts by health staff can then be targeted at the local level. In summary, this study found significant shortfalls in delivery of penicillin prophylaxis and follow-up of patients in one remote Aboriginal community. Experience elsewhere indicates that recurrent ARF and RHD can be prevented through properly run secondary prevention programs with good case management. Adequate and sustainable funding is required for administration of the central program and register; resources should also be provided at the community level so that the program co-ordinator is not diverted from his/her stated duties. Additional measures may be required to ensure delivery of services to males. We recommend that appropriate specialist services, including echocardiography, be made more available on a regular basis at a local level. Without these interventions, it is unlikely that ARF/ RHD management can be improved beyond that documented here. Acknowledgements Our thanks to Kay McGough, Dr Keith Edwards, the clinic staff at the Aboriginal community, the Department of Aerial Medical Services, NT, and NT Cardiac Services for their assistance and advice. Malcolm McDonald is funded by a grant from the Heart Foundation of Australia. Otherwise, the authors have no conflict of interest.

Journal

Australian and New Zealand Journal of Public HealthWiley

Published: Dec 1, 2005

There are no references for this article.