Local co-ordination and case management can enhance Indigenous eye care a qualitative study

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Anjou et al. BMC Health Services Research 2013, 13:255 RESEARCH ARTICLE Open Access Local co-ordination and case management can enhance Indigenous eye care a qualitative study Mitchell D Anjou *, Andrea
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Anjou et al. BMC Health Services Research 2013, 13:255 RESEARCH ARTICLE Open Access Local co-ordination and case management can enhance Indigenous eye care a qualitative study Mitchell D Anjou *, Andrea I Boudville and Hugh R Taylor Abstract Background: Indigenous adults suffer six times more blindness than other Australians but 94% of this vision loss is unnecessary being preventable or treatable. We have explored the barriers and solutions to improve Indigenous eye health and proposed significant system changes required to close the gap for Indigenous eye health. This paper aims to identify the local co-ordination and case management requirements necessary to improve eye care for Indigenous Australians. Methods: A qualitative study, using semi-structured interviews, focus groups, stakeholder workshops and meetings was conducted in community, private practice, hospital, non-government organisation and government settings. Data were collected at 21 sites across Australia. Semi-structured interviews were conducted with 289 people working in Indigenous health and eye care; focus group discussions with 81 community members; stakeholder workshops involving 86 individuals; and separate meetings with 75 people. 531 people participated in the consultations. Barriers and issues were identified through thematic analysis and policy solutions developed through iterative consultation. Results: Poorly co-ordinated eye care services for Indigenous Australians are inefficient and costly and result in poorer outcomes for patients, communities and health care providers. Services are more effective where there is good co-ordination of services and case management of patients along the pathway of care. The establishment of clear pathways of care, development local and regional partnerships to manage services and service providers and the application of sufficient workforce with clear roles and responsibilities have the potential to achieve important improvements in eye care. Conclusions: Co-ordination is a key to close the gap in eye care for Indigenous Australians. Properly co-ordinated care and support along the patient pathway through case management will save money by preventing dropout of patients who haven t received treatment and a successfully functioning system will encourage more people to enter for care. Keywords: Indigenous Australians, Aboriginal and Torres Strait Islander, Eye care, Co-ordination, Case management * Correspondence: Indigenous Eye Health Unit, Melbourne School of Population Health, The University of Melbourne, Level 5, 207 Bouverie Street, Carlton, Melbourne, VIC 3010, Australia 2013 Anjou et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Anjou et al. BMC Health Services Research 2013, 13:255 Page 2 of 10 Background The path to care is different for each of the main eye care conditions causing vision loss for Indigenous Australians cataract, refractive error, diabetes and trachoma and the availability of practitioners, services and settings supporting eye care are known to vary considerably and geographically across Australia [1-6]. There is attrition of patients along the pathways in Indigenous eye care [6,7] and patients are often not able to successfully negotiate a given care pathway [3,8,9]. Higher risk patients are also known to have a greater chance of not successfully navigating care pathways and suffer a greater consequence for failing to do so [8,9]. The 2008 National Indigenous Eye Health Survey (NIEHS) established that Indigenous adults suffer six times more blindness than other Australians but 94% of this vision loss is preventable of treatable and 35% of Indigenous adults have never had an eye examination [1]. Co-ordination has been identified as a key component often missing in the service system [10-12] and patient outcomes can be improved if care is co-ordinated to assist the patient s journey [12-14]. Co-ordination generally involves the arrangement of and communication between various components in the health system including the service practitioners and facilities [12,15]. Case-management, in addition, operates from the patient perspective to support the patient along their care pathway [16]. The importance of co-ordination in health care settings with Indigenous Australians has been demonstrated in cancer care, mental health, alcohol and drug use problems, lung health, medication management and heart disease [17-21]. The use of case management or care co-ordinators has also been shown to improve health care outcomes for Indigenous Australians [22-24]. There have been repeated calls for improved coordination of Indigenous eye health but a sustainable and satisfactory solution has not yet been achieved [25-31]. Since the late 1990s, Regional Eye Health Coordinator (REHC) positions have been based in Aboriginal Health Services (AHS) to support the regional coordination of eye care [26,27]. Currently less than half theoriginallyestablished34regionshavearehcand many of these staff now only work part-time with a small proportion and insufficient time allocated to eye care. Many deficiencies and inconsistencies in the role and function of REHC have been documented [28,29] and this has resulted in many gaps in the various pathways of eye care [10,11]. This study aims to identify the barriers for effective organisation of eye care and patient support at a local area level and propose sector-supported solutions to improve the co-ordination of eye care in Australia for Aboriginal and Torres Strait Islander peoples. Methods Ethical approval for the project was provided by The University of Melbourne and subsequently by eight ethics committees across Australia [4]. Agreement to conduct the project was provided by the National Aboriginal Community Controlled Health Organisation (NACCHO) and five state and one territory affiliate organization [4,32]. The investigation was conducted in accordance with the Declaration of Helsinki 1975 and the National Health and Medical Research Council Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research 2003 [33]. Data was collected through semi-structured interviews and focus groups. Focus groups were conducted at 7 sites in Victoria, 3 urban and 4 rural, and involved 81 community members. Semi-structured interviews were conducted at 21 sites across Australia (including the 7 Victorian sites) and included five states and one territory in urban (n = 6), regional (n = 7) and remote (n = 8) locations. Sites for field work were selected in consultation with NACCHO state and territory affiliates and a deductive process using previous reports to identify existing eye care programs. Twenty nine Indigenous health organisations participated in the project. A total of 289 people working in Indigenous health, eye care, hospital, non-government organisations and government were interviewed. These included AHS staff (n = 98), community health staff (n = 14), optometrists (n = 31), ophthalmologists (n = 25), hospital staff (n = 35), Division of General Practice staff (n = 10), non-government organisation staff (n = 16), NACCHO affiliate staff (n = 12) and government staff (n = 29). Consultations were conducted with REHC who have responsibility to co-ordinate Indigenous eye health and optometrists and ophthalmologists providing visiting services to AHS or receiving support for Indigenous specific eye care. Semi-structured interview questions and focus group discussion topics were pre-scripted [4] although interviews and discussions were tailored to the participants areas of operation, knowledge, experience and interest. Open-ended questions explored barriers and solutions to improve the management, planning and operation of eye care services. The semi-structured interview questions investigated issues about the delivery and provision of eye health services, pathways of care and the coordination of visiting and specialist services. Focus group discussion topics related to barriers that impact on participant s access to eye health services and explored suggestions to improve access to current eye care services. Data were collated and content analysed using qualitative analysis methods and NVivo software. The thematic analysis also included observations, suggestions and successful examples from the field. Broad themes were identified by the research team as a basis to build Anjou et al. BMC Health Services Research 2013, 13:255 Page 3 of 10 specific policy recommendations. These areas were workforce, co-ordination, utilization, primary health care/ primary eye care, monitoring and evaluation, governance and social marketing/awareness. Pathway diagrams were established and population needs estimates calculated to support and inform sector discussion around policy considerations. Policy recommendations were developed subsequently through stakeholder workshops. Three workshops were conducted in the course of the project and 86 individual stakeholders attended one or more workshop. An iterative process was undertaken to refine policy recommendations over a six month period using stakeholder comment and feedback and subsequent circulation of draft ideas to stakeholders. Additionally, 32 stakeholder organisations and federal and state ministers and bureaucrats from eight jurisdictions were further engaged through 38 face-to-face meetings with more than 75 people to elicit final feedback on the project proposals. The draft recommendations were then widely circulated through Aboriginal health and eye health sectors and to government departments for comment and feedback and this additional input allowed further refinement of the recommendations. The recommendations were published in The Roadmap to Close the Gap for Vision Full Report [4] in January 2012 and disseminated to all the stakeholder organisations that had participated in consultations. Results Table1summarisesthethemes,barriersandsolutions identified in this study for improving the co-ordination of Aboriginal and Torres Strait Islander peoples eye care. Pathways of care Our field studies illustrated that the provision of eye care involves multiple people and multiple locations. These include the patient and their family and carers, Aboriginal Health Workers (AHW), optometrists, ophthalmologists, hospital staff, clinic staff in AHS, private clinics and public hospitals. Multiple visits are usually required to ensure completion of treatment (Figure 1). For example, the normal passage of care for someone with cataract may involve six or more specialist visits. It is more difficult to specify the patient pathway in diabetic retinopathy because of the variability of treatment for this condition (one or both eyes treated, pan retinal treatment versus focal macular treatment, limited extent of laser treatment able to be provided at one visit and the need for retreatment). One specialist practitioner working with a largely Indigenous population reported that 46% of patients with diabetic retinopathy required one laser treatment, 29% required two treatments and 24% required three or more treatments. It was reported by AHS staff that the more steps there are in the care pathway, the greater the likelihood of a patient not successfully traversing the pathway. Each additional provider and location adds complexity and difficulty. It was apparent that poorer outcomes are experienced when the pathway of care is not well understood and therefore not as well supported and cannot be explained readily to patients. Table 1 Themes, barriers and solutions for improving co-ordination of Aboriginal and Torres Strait Islander peoples eye care Themes Barriers Solutions Pathways of care Service system complexity Establish local referral pathways and service directories multiple people multiple locations multiple visits Knowledge of pathways Ensure local referral pathways are known to all service providers Co-ordination workforce Wide range of tasks Inadequate resources Inconsistency of roles Sufficient people in each area are appropriately designated, trained and funded to organise services and co-ordinate patients Sufficient workforce and funding are available to meet population needs Ensure each local area identifies personnel and positions required for proper co-ordination and organisation Case management Designation of responsibility Establish case co-ordination strategy within each Aboriginal Health Service for all patients at high need or referred for surgery Local eye care coordination Fragmented system elements Informal organisational arrangements Community engagement Establish mechanisms for co-ordination within local population health structures Local co-ordination is built on partnerships and agreements with local providers and visiting eye services Eye care services are developed and delivered with the engagement of the local community Anjou et al. BMC Health Services Research 2013, 13:255 Page 4 of 10 Figure 1 Complexity of the clinical pathway [1,2]. A patient care pathway diagram was developed from field consultations (Figure 2). The circular sections to the left represent the interaction between the individual (me), the family and the community and demonstrate the interactions for a person before they enter the service system. The boxes overlying the circles influence whether an individual enters the eye care service system. The service system itself is represented by the overlying boxes to the right, which have a mix of location, level of care, service provider and cycle of care. The relationships between these elements are complex. The arrow at the bottom of the diagram illustrates the mechanisms and behaviours that support the patient journey through the service system co-ordination, communication and collaboration are key contributors to successful patient care across the system and the role of case management is identified. Many clinic staff, and referring practitioners, were not aware of the number and type of visits required in care nor the best practice guidelines for a normal or average patient journey. Health staff were aware of their individual responsibilities within a given section of the pathway Anjou et al. BMC Health Services Research 2013, 13:255 Page 5 of 10 Figure 2 Patient care pathway [1,2]. and their role in identifying, assisting and, if necessary, referring a patient but they were not well informed about how the other elements of the system worked. Moreover, participants appeared not to be motivated to explore or seek further understanding. This was possibly because of the ever-changing nature of services, but also because of reluctance to step into what was considered another practitioner s area. I didn t know that the visiting optometrist could check eyes for diabetes Aboriginal Health Service staff member The poor understanding of the elements in the system contributes to poorer patient outcomes, variable work quality and a reduced ability for those in the system to advocate for improvement or change. If no-one knows how long it is reasonable to wait for cataract surgery in the local public hospital, then the community just accepts whatever time is offered and the health services and optometrists are not empowered to remonstrate for change. I have done my job by arranging referral for the patient, it is now not my problem Optometrist Further, the eye care system is made more complex with the mix of public providers and support systems, and private practitioners. Patients are often required to navigate between private and public options for care and sometimes are given information by practitioners who are potentially conflicted. Patients may go to a publicly funded optometry service delivered by a local private practitioner and be referred to a local private ophthalmologist who is required to see the patient before the patient can be placed on a public hospital waiting list for surgery. Again, post-operative follow up may be provided within the private sector. It was observed that the tension between public and private offerings contributes to community distrust of the service system. We can t wait for the visiting service, so we go to the local optometrist but we know they are too expensive Community member Recommendations suggested and developed by stakeholders to help better clarify the pathways of eye care included local development of service directories and referral protocols. Co-ordination workforce A wide range of co-ordination and organisation tasks have been identified within regions to ensure effective Anjou et al. BMC Health Services Research 2013, 13:255 Page 6 of 10 Table 2 The levels of co-ordination to support both eye care services and the patient journey [4,34] Levels of co-ordination Community Community liaison provides a vital link between individual community members, their families and the clinic and its services This may include identification, transport, interpretation, translation and moral support Clinic, Primary Eye Care Referral of more complex cases to visiting eye team Maintenance of patient records and referral lists for visiting eye team Scheduling of visits by visiting eye team Co-ordination with other visiting specialists Co-ordination of exam rooms, accommodation, equipment and local staff Make arrangements for referrals to Regional Hospital Schedule follow up visits as required Eye Team, Secondary Eye Care Co-ordination of visits with clinic and community Update patient records as necessary Communication and co-ordination between visiting optometrists and ophthalmologists Mechanism for communication and co-ordination with other visiting specialists Specific equipment items brought with team (e.g. lasers, slit lamp) Organise a list/information about patients waiting to be seen Assistance with patient identification, transport, translation, explanation and support Clerical support for forms and paperwork Referral systems for further management and surgery Regional Hospital, Tertiary Eye Care Organisation of the clinic space, theatre time, staff, accommodation, travel and surgical supplies for the visiting eye teams Co-ordination with other visiting specialists Organisation and supply of surgical equipment Co-ordination of patients who require surgery with community and clinic Organisation of travel and other arrangements for patients National/State/Territory Co-ordination of other specialist and allied health visits with the visiting team Oversight of co-ordination performed at different levels, recruitment, training and support Oversight of distribution of visiting eye teams (and other specialists) including ratio of optometric and ophthalmic visits and frequency of visits eye care delivery (Table 2) [4,10]. The specific allocation of responsibility appears to vary from region to region depending on local factors. The number of people required for this co-ordination also varied with local population size, geographic distribution, availability of local services and the requirement for travel. There was consensus demonstrated in our field consultations and stakeholder workshops that the task list and range of responsibilities in co-ordination was generally beyond the capacity and skill set of any one person. Using the NIEHS prevalence of diabetes, refractive error, cataract and trachoma in Indigenous Australia, the eye care required each year [1-3] for a cohort of 10,000 Indigenous people has been calculated (Table 3) [11-13]. For clinical service time only 1.0 equivalent full time (EFT) optometrist and 0.3 (EFT) ophthalmologists are required. Travel time and clinical complexity are not included in these estimates. However, some 8.3 EFT staff members are required to provide co-ordination and
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