Arthritis and disparities in health care

Arthritis is an umbrella term used to identify a collection of over 100 musculoskeletal conditions, including osteoarthritis, rheumatoid arthritis, lupus and gout [10]. These conditions are leading causes of pain and disability, impacting 15% of the population or 3.6 million Australians [10]. Compared to the general population, people 45 years or older who experience arthritis are twice as likely to describe their health as poor, and twice as likely to report very high levels of psychological distress and also report experiencing moderate to very severe pain [10]. Like many chronic conditions, the impact of arthritis is heightened in populations that experience greater burden of disease as a result of health inequity, such as Indigenous populations [11].

Impact of arthritis on Aboriginal communities

Arthritis is highly prevalent in Indigenous communities in Australia, Canada, New Zealand and the United States of America [5–7, 12]. In Australia, the prevalence of osteoarthritis in Aboriginal people is between 1.2 and 1.5 times higher than non-Aboriginal people [13] and the burden of disease is greater (31 Disability-Adjusted Life Years [DALY] per 1000 people for Aboriginal people versus 22 per 1000 people for non-Aboriginal people) [14]. The prevalence of lupus in Aboriginal people is 52.0–92.8 cases per 100 000 population compared to 19.3–39.0 cases per 100 000 population for non-Aboriginal people [15]. The burden of rheumatoid arthritis in Aboriginal people is 4.8 DALY per 1,000 people compared to 3.5 DALY per 1,000 for non-Aboriginal people [14].

Despite an increased prevalence and burden of arthritis within Aboriginal communities, the utilisation of care for arthritis is low. For example, Aboriginal people with hip or knee osteoarthritis access primary care services at half the rate based on incidence [16, 17]. Cultural barriers for Aboriginal people when accessing health care have been recognised since the 1970s [18] yet, Aboriginal people continue to report feeling unsafe, experience racism and difficulties in understanding or being understood by service providers [19, 20]. For Aboriginal people seeking care for arthritis, ineffective communication with health practitioners, lower levels of health literacy and experiences of stigma are further barriers to care [5]. One way to address these barriers is through improving access to culturally appropriate information tailored to the needs of Aboriginal people [5, 21, 22]. This is an essential step in building an accessible, culturally secure program of arthritis care that is required to address the current higher prevalence of arthritic conditions experienced by Aboriginal people.

Evidence based management of arthritis and the role of patient information resources

Patient education and information resources such as booklets, factsheets and websites can be stand-alone or provided within health care consultations to reinforce verbal teaching and facilitate meaningful communication [23]. They aim to educate patients, families, and the public in an effort to increase health knowledge [24, 25] and in turn improve health literacy [26] and comprehension [27]. In doing so, patient education and information resources empower patients and their families to have greater involvement in decisions about care, to engage in self-management [28, 29] and adhere to medication and physical activity programs [30], positively impacting health outcomes [31, 32].

Peak national bodies such as Arthritis Australia, and State and Territory based arthritis organisations such as Arthritis and Osteoporosis Western Australia, provide an extensive range of arthritis management resources such as information sheets and booklets, patient education tools and programs and support services. Typically, these resources address beliefs and knowledge about arthritis and encourage patients to proactively self-manage their condition through pain management strategies, staying active and engaging in exercise and physical activity. Despite the availability of such resources, there are currently no arthritis resources that have been developed for Aboriginal people or involving input from Aboriginal consumers who experience arthritis. Aboriginal people need to be involved in the development of resources, as governance of the process is more likely to lead to resources which are meaningful and relevant to Aboriginal people with arthritis. This is likely to increase uptake of advice and recommendations made within the resources [9, 33].

Ethical considerations

This project follows the Australian National Health and Medical Research Council (NHMRC) guidelines for ethical conduct for research in Aboriginal and Torres Strait Islander People and communities and has been designed with multilevel Aboriginal engagement and consultation. Each of the six core values of spirit and integrity, cultural continuity, equity, reciprocity, respect, and responsibility have been addressed in ethics applications approved by the Western Australian Aboriginal Human Ethics Committee (HREC1018) on the 6^th of October 2020 and the St Vincent’s Hospital Melbourne Human Research Ethics Committee (HREC 224/20) on the 4^th of November 2020. These applications have also addressed the NHMRC Indigenous research excellence criteria: community engagement, benefit, sustainability and transferability and building capabilities.

Patient and public involvement

This project is predicated on meaningful patient and public involvement. We will establish a community reference group and advisory group, both of which will comprise of a diverse group of Aboriginal consumers who experience arthritis. The community reference group and advisory group will have a significant role in guiding the conduct of all phases of this research.

Partnerships

This project involves a national partnership between Arthritis and Osteoporosis Western Australia and the Enhancing Equity, Collaboration and Culturally secure Osteoarthritis care for Aboriginal Australians (ECCO) collaboration, with the support of Arthritis Australia and funding from the Commonwealth Government. The ECCO collaboration is an inter-professional team of Aboriginal and non-Aboriginal health practitioners, health service staff, and research leaders from the University of Melbourne, Geraldton Regional Aboriginal Medical Service, Victorian Aboriginal Heath Service, University of Western Australia, Western Australia Centre for Rural Health, Telethon Kids Institute, and St Vincent’s Hospital, Melbourne. ECCO also has established links with local Aboriginal Medical Services (AMSs) in Western Australia and Victoria. This collective was established with support from the NHMRC Centre for Research Excellence (CRE) in Total Joint Replacement which aims to OPtimise oUtcomes, equity, cost effectiveness and patient Selection for people with osteoarthritis (OPUS). Work conducted at the OPUS CRE identified that there is an absence of opportunity for Aboriginal people to access culturally appropriate arthritis information and culturally secure clinical care. The ECCO collaboration was formed to address this gap in musculoskeletal health research and to build an evidence-based model of arthritis care that addresses the needs of Aboriginal people.

Participants

Participants and participant groups have been described within each of the six phases of this study outlined below.

Phase 1: Establish a community reference group and advisory group

The first phase of this research will be to establish a community reference group and advisory group.

Phase 2. Explore the health information needs and preferences of Aboriginal people with arthritis

In the second phase of research we will conduct a qualitative study to explore the health information needs and preferences of Aboriginal people with arthritis. To recruit participants, we will draw on the network of investigators and existing partnerships with local AMSs. Potential participants will be provided a detailed Participant Information Sheet and an Aboriginal research assistant will follow up with phone call to further describe and discuss the study. The Aboriginal research assistant will answer any questions the potential participants may have and seek verbal consent once they are satisfied the participant is fully informed. Participants will be adults over the age of 18, as approaches to providing health information to children would likely differ significantly to the adult population. We will ensure that the sample comprises of a representative number of people with osteoarthritis, rheumatoid arthritis, lupus and gout, and that gender is diversely represented relative to the prevalence of each condition. We will employ maximal variation sampling to ensure that a range of ages and people from diverse geographical locations are included. Data collection and analysis will be conducted in parallel. Through our yarning approach, we anticipate that each interview will generate rich data. The sample size will be guided by thematic saturation within each group i.e. the point at which no new themes are emerging from the data. To capture a range of voices across diverse urban, regional and rural settings, we will aim to recruit 4–5 participants per condition at each of the two main study sites (Geraldton, Western Australia and Melbourne, Victoria). Thus, we anticipate recruiting approximately 8–10 participants per condition; for a total of 32–40 across all of the included conditions. Individual interviews held over a teleconferencing platform will be conducted by both an Aboriginal researcher and non-Aboriginal researcher with expertise interviewing people with arthritis. Researchers conducting the interviews will seek additional verbal informed consent, ensuring the participant has read and understood the Participant Information Sheet. Verbal consent from both participants and any family members present will be audiotaped prior to the beginning of the interview. Interview questions will explore participants’ experience of engaging with health resources in the past, their informational needs in relation to arthritis and preferences regarding the format of health information. Interviews will be audio-recorded and transcribed. Data will be analysed for each condition separately. Thematic analysis [36] of interview transcripts will be led by the two interviewers. To test/challenge emerging interpretations, preliminary findings from the analysis will be discussed with the community reference and advisory group. The outcome will be a set of recommendations about the content and format of health information based on the needs and preferences of Aboriginal people with arthritis.

Phase 3. Synthesise key recommendations from high quality clinical practice guidelines on arthritis care

Adopting a methodology previously described in Lin et al. 2018 [37]; we will undertake a review of the literature and synthesise findings from contemporary clinical practice guidelines on osteoarthritis, rheumatoid arthritis, lupus and gout to identify recommendations related to patient information (See Open Science Framework Protocol Registration: DOI 10.17605/ https://osf.io/UB3Y7/). We will select clinical practice guidelines published within the last five years to reflect up-to-date research evidence. Quality of the retrieved clinical practice guidelines will be appraised using the Appraisal of Guidelines for Research Evaluation II (AGREE II) instrument [38]. The AGREE II has been widely used to assess the quality of clinical practice guidelines, with validated cut-off scores for high and low quality. Only clinical practice guidelines scored as high quality on the AGREE II will be included in our synthesis. Data will be synthesised separately for each condition. The synthesis will involve four stages: extracting information; classifying recommendations; developing a narrative summary and describing common recommendations relating to patient information.

Phase 4. Cultural adaption of key recommendations

Key recommendations will be culturally adapted through consultation with the advisory group using a modified nominal group technique [39], a method for arriving at consensus among a group of experts. Members of the advisory group will be proved a detailed Participant Information Sheet and be given an opportunity to ask questions about participating before being involved in the nominal group discussion. All participants will sign a written consent form on the day of the nominal group discussion. The modified nominal group technique will begin with a yarning session about the key recommendations identified in phases 2 and 3. The advisory group will be asked a question such as: "How can we adapt these key recommendations for Aboriginal consumers?" Participants will be encouraged to consider both the content and format of the recommendations. Following this, in a round-robin fashion, each participant will be invited to present one response or idea at a time. The ideas will be recorded on a whiteboard or virtual whiteboard made visible to all participants. This phase will continue until no new ideas are generated. Participants will then discuss and clarify the ideas before grouping ideas together into themes. In the final step, themes will be ranked and prioritized. Participants will be invited to vote for the themes they deem most important. A rank-order will then be created for listed themes based on total votes. The outcome will be a set of culturally informed and adapted arthritis recommendations.

Phase 5. Develop culturally adapted arthritis resources

Based on the outcomes of phase four, the researchers will draft a cultural adaption of the key recommendations and format them in a way that meets the needs of Aboriginal consumers and is informed by evidence-based frameworks for the development of patient health information [40, 41]. This may take the form of print, video or web-based materials or a combination of all. Principles such as observing, watching and narrative storytelling may be incorporated into the formats chosen and will be guided by the preferences of the participants. A first draft of the resources will be presented to the community reference group using a culturally adapted nominal group discussion as outlined in phase 4. Members of the community reference group will be proved a detailed Participant Information Sheet and be given an opportunity to ask questions about participating before being involved in the nominal group discussion. All participants will sign a written consent form on the day of the nominal group discussion. First, the community reference group members will be given the opportunity to interact with the draft resources. Following this, a structured yarning discussion will be facilitated to determine how well the resources meet the needs of Aboriginal consumers with arthritis. Key themes will be summarised and ranked and the resulting recommendations will be used to refine the resources.

Phase 6. Qualitative evaluation of resources

We will conduct a qualitative evaluation of the resources among Aboriginal consumers. The sample will include a representative number of people with osteoarthritis, rheumatoid arthritis, lupus and gout and men and women who represent a range of ages and come from diverse geographical locations across urban, regional, remote Australia. While the actual sample size will be guided by thematic saturation, we will aim to recruit approximately 6–8 individuals per condition. Recruitment will be facilitated through existing networks and AMSs at each study site and the same informed consent procedures adopted in Phase 2 will be used to ensure participants are fully informed before participating in the evaluation. Employing culturally appropriate research yarning, the qualitative evaluation will involve an adapted think aloud exercise [42] and semi-structured interviews. In the think aloud exercise, participants will be asked to review the culturally adapted resources and ’think aloud’ about what they are experiencing while being observed by the interviewer. The interviewer will prompt the participant during the observation such as "Can you describe what you are seeing to me?" and "How does what you are seeing make you feel?" to encourage participants to share their understanding and reactions to the resources. Researchers will pay particular attention to participants non-verbal cues, prompting participants to clarify their behaviour and thought process, for example: “What were you thinking when you stopped at…?” The think aloud exercise will be followed by a research yarn to explore how key messages in the resources were taken up by the participants in light of the participants’ underlying assumptions (i.e. how the participants pre-existing experiences interact with what parts of the information they give attention to, accept or dismiss). We will consider not only the intended effects of the messages (i.e. on the attitudes, beliefs, intentions of the participants) but also any potential unintended effects of the messages (e.g. on the physical, mental, social and cultural wellbeing of the participants). Data will be collected and analysed in parallel so that emerging interpretations can be tested and challenged in subsequent interviews. Data will be analysed using a critical approach [43] and the outcome will be categorised into themes describing the participants’ experiences of engaging with the culturally adapted arthritis resources.