National survey of hospital rheumatology service users to inform a statement set describing the minimum service expectations for publicly funded rheumatology secondary care in Aotearoa New Zealand

People with inflammatory rheumatic diseases (IRDs) need healthcare from specialist rheumatology teams to achieve the best possible rheumatic disease outcomes. In Aotearoa New Zealand, there is currently no national service model for what should be provided in a rheumatology service and how care should be organised and delivered. The views of rheumatologists and users of rheumatology services—people with rheumatic diseases—are critical in informing potential rheumatology service models. We aim to develop a national rheumatology service model for public hospitals in Aotearoa New Zealand, informed by key stakeholders.

In 2022, we described the consensus among rheumatologists in Aotearoa New Zealand as to what components of best-practice rheumatology services identified in the international literature should be included in rheumatology services in the Aotearoa New Zealand public health system.¹ Of 22 considered statements of service components, there was consensus among rheumatologists that 16 be included in both small and large hospitals in Aotearoa New Zealand, and one statement with consensus to include in larger hospitals only. There were five statements, including addressing discharge of people with well-controlled IRD to primary care and telemedicine, for which consensus was not reached. These findings outlined rheumatologists’ views of the minimal components of public health system rheumatology services in hospitals in Aotearoa New Zealand.

Service users’ views are essential to inform service models.² To address this need, we undertook a qualitative study with people from across Aotearoa New Zealand with IRDs who had used public health system rheumatology services.³ We explored their views of these rheumatology services, specifically considering staffing, ways of working and what health services were able to be accessed via these services. We then evaluated if the best practice statements from the literature captured these needs. Patient-participant feedback led to a refining of statements from the rheumatologist consensus exercise and the development of three new principles and three new statements.³

In this study we aimed to seek views on all the statements considered to date from a wider group of people with IRDs who have used rheumatology services. We undertook a nation-wide survey of people who have used district health board (DHB, now Health New Zealand – Te Whatu Ora) rheumatology services in hospitals in Aotearoa New Zealand in the last 5 years. Our research question was How do people using public rheumatology services view the potential service components of public hospital rheumatology services? We describe the findings of this survey, which informed a statement set describing the minimum components (staffing, services, ways of working) for publicly funded rheumatology secondary care in Aotearoa New Zealand. These statements have since been endorsed by Arthritis New Zealand and the New Zealand Rheumatology Association.

Methods

Service user views on the statements of care in DHB rheumatology services from the rheumatologist consensus exercise and patient focus group were sought via an electronic survey. Study data were collected and managed using REDCap electronic data capture tools hosted at the University of Otago.^4,5 This bespoke survey was developed by the research team. The survey was open to all persons over 18 years in Aotearoa New Zealand who self-reported as having used DHB rheumatology services in the past 5 years, where “used” was not further defined.

The survey was disseminated via Arthritis New Zealand social media channels (Twitter, Facebook) and communication streams, via a short-URL link to the page on the Arthritis New Zealand website.⁶ The advertisement materials are provided in Appendix 1. These websites are all open to the public, and, in addition, the social media sites will have “followers”. Recruitment was through convenience sampling. Demographic and self-reported clinical data were collected without identification. After careful consideration and to reduce potential for harm, iwi affiliation data were not collected, as results were unlikely to yield benefits to specific iwi. Participants were asked to indicate their level of agreement, using a 7-point Likert scale, on whether each service statement should be a component of future public hospital (secondary or specialist care) rheumatology services in Aotearoa New Zealand. Response options were “strongly agree”, “agree”, “somewhat agree”, “neither agree or disagree”, “somewhat disagree”, “disagree” and “strongly disagree”. The survey questions included the three principles of care and 23 of the 25 statements of care (Appendix 2). All statements considered in the rheumatologist consensus exercise were included, including those on which rheumatologists had not reached consensus; (Statements #4 [Survey question number (Q) Q20], #17 [Q22], #18 [Q23], #20 [Q10] and #22 [Q23]). Survey questions 1, 11 and 12 were the three new principles, and questions 2, 9 and 10 were the three new statements from the service-user qualitative study. The principles and statements were re-ordered to be grouped in similar ideas or care areas.

Two statements addressing Te Tiriti o Waitangi obligations and use of health equity assessment tools (Statements #18 and #19) were not included in the survey. The Pae Ora (Healthy Futures) Act 2022 embeds these expectations in all care delivered by Health New Zealand – Te Whatu Ora. Therefore, we considered that these statements, which were developed before the Pae Ora Act was passed, no longer needed to be included in rheumatology-specific service standards.

To allow participants to provide additional views and suggestions, free-text comments were invited (but optional) for each statement, and at the survey conclusion. REDCap and pilot testing by the research team, which includes a person with an IRD who has used both public hospital and private rheumatology services, indicated the survey would take less than 10 minutes to complete and that all functionality worked as expected. The survey instrument has 30 screens/pages with the statements having a screen each. The demographics, service use and consent screens/pages had 3–6 responses each. The order of the standards was fixed. It was not mandatory for a participant to answer every question and participants could more forward and backwards through the survey. No specific steps were taken to actively prevent multiple entries from an individual. The survey instrument is provided in Appendix 2.

The survey was open for 4 weeks, from 17 June 2022 until 15 July 2022. A reminder was posted on the Arthritis New Zealand social media channels on 1 July 2022. A responder was considered a “study participant” if at least one response to any statement was provided. Data were downloaded from REDCap and summarised using descriptive statistics. Consensus about a principle or statement was defined as >80% of participants giving ratings of “strongly agree” or “agree”. The free-text comments were analysed using inductive content analysis to describe the additional information provided about the statements.⁷ Comments were read several times and views were categorised according to key content overall or by particular service statement. Views or ideas were coded and categorised independently by two team members (VM, RG), then discussed and refined until an agreed categorisation reached. These were summarised narratively.

Ethical approval was obtained from the University of Otago Human Ethics Committee, approval number D22/140. The study was funded by Arthritis New Zealand, with Arthritis New Zealand also disseminating the study URL; however, the authors undertook the study independently.

The reporting of this study is guided by the CHERRIES checklist for web-based surveys. ⁸

Results

The survey link was opened 278 times, with 253 people giving consent for data collection and 246 people then providing complete demographic data. Of these, 237 people gave a response to at least one statement and 219 people provided complete survey responses (completion rate 219/253, 86.5%). Data from incomplete survey responses were included in analysis. Most participants were female (213/237, 90%), three-quarters were older than 40 years of age, and the most frequently reported ethnicity was New Zealand European (83.4%) (Table 1). Most participants reported their diagnosis leading to use of DHB rheumatology services as an inflammatory arthritis, most often rheumatoid arthritis (56%), psoriatic arthritis (20%), and spondyloarthropathies (19%) and connective tissue disease/autoimmune disease (20%). More than half of the participants had been in the rheumatology care of their current DHB for more than 5 years. More than half of participants reported using one of four DHB’s rheumatology services, namely Capital, Coast and Hutt Valley (19%), Southern (13%), Waikato (11%) and Canterbury (11%) (Appendix Table 1).

View Table 1, Figure 1.

Consensus was reached for 23 of the 26 principles and statements of care, with >80% participants giving ratings of “strongly agree” or “agree” (Figure 1, data provided in Appendix 3). The range for respondent selection of “strongly agree” for these 23 items was 54.1% to 89.5%. Statement 8 (Q8 in survey), “Within an outpatient rheumatology clinic, a specialised rheumatology nurse should have their own consultations with chronic rheumatic disease patients” had the lowest “strongly agree” response at 54.1%.

Three statements did not receive at least 80% “strongly agree” or “agree” responses from survey participants. These statements addressed provision of an infusion service for biologic disease modifying anti-rheumatic drugs (Statement 14 [Q24 in the survey]); offering outpatient assessment for non-inflammatory musculoskeletal conditions like osteoarthritis and fibromyalgia (Statement 17 [Q22]); and discharge back to primary care when an inflammatory disease is stable (Statement 22 [Q23]). Statement 22, “discharge to primary care when stable”, had highest participant disagreement with only 29% of respondents rating “strongly agree” or “agree”, 37% rating “somewhat agree”, “neither agree or disagree” or “somewhat disagree” and 34% rating “disagree” or “strongly disagree”.

Free-text comments about statements (n=634) were provided by 135 participants. The minimum number of comments for a statement was 13 and the mean number of comments per statement was 24. Statement 22, “discharge to primary care when stable”, had the highest number of comments at 53. There were 145 free-text comments provided at the end of the survey. Content analysis showed comments were 1) expression of support of the statement, 2) reconfirming how or why particular services were valued or valuable, 3) caveats about statements, and 4) suggesting other services not mentioned in the statement. Overall, the majority of free-text responses were in support of service component statements. However, these were of two types: direct positive endorsement, and indirect endorsement by contrasting with current (poor) care experiences that would be improved or addressed if rheumatology services had the care component described. Other free-text responses were about the value of nursing, allied health, or support or education services. Comments in response to statements (Questions 5, 6, 7, 8, 9) about nurse care strongly and consistently expressed the high value that participants placed on nurse care, emphasising how helpful and important this care was to them. There were also caveat statements about nurse-led care or services, including that while nurse-led care was valued, it should not be a substitute for rheumatologist specialist care, it should be in appropriate clinical circumstances only, and that nurses should have suitable and adequate training in rheumatology. Other caveats about the statements included the following: that telehealth should be used only if clinically appropriate, and also if patient choice/agreement had occurred; that service users/patients did not have the knowledge or experience to comment on appropriateness or otherwise of staff full-time equivalent requirements or dedicated infusion services; and that shared specialty clinics would not be necessary if there was improved communication between specialist services and/or specialists. Suggestions of other valued healthcare services that were currently either hard to access from rheumatology services or should be provided included physiotherapy, occupational therapy, pharmacy, podiatry, mental health support and health literacy services. Content analysis of free-text comments to Statement 22 “discharge to primary care when stable” showed reasons participants did not agree with this statement to include the unpredictable nature of IRDs, including flares and features that required rheumatologist expertise to interpret and treat, the difficulties in accessing primary care or re-accessing rheumatologist care if discharged, that general practitioners are specialist generalists while rheumatologists are specialists in their IRDs, and also, offering the preferred option of staying under rheumatology service care with less frequent routine visits but easy access when needed.

Discussion

In this survey of people who have used DHB rheumatology services in the last 5 years, consensus was reached for 23/26 of the statements of care components for public health system rheumatology services. Statements that did not achieve consensus included provision of infusion services, assessment of non-inflammatory musculoskeletal conditions, and discharge back (transfer of care) to primary care when inflammation is controlled. Free-text comments included further support of the statements, framed either positively or by contrasting with current care experiences, caveats about statements and suggesting other services. These data provide further guidance from service users about what should be included in publicly funded secondary care rheumatology services in Aotearoa New Zealand.

Since most of these statements were from best practice recommendations for rheumatology services in the international literature, have achieved consensus in a survey of rheumatologists in Aotearoa New Zealand and have already been refined by people with IRD, these data are not surprising. However, it remains important to seek the views of service-users to inform service recommendations.⁹ This work also allows comparison of views of rheumatologists and service users, particularly around statements that did not reach agreement in one or both groups.

There were two statements that did not reach 80% agreement/consensus for both rheumatologists¹ and service users, namely Statement 17 (offering outpatient assessment for non-inflammatory musculoskeletal conditions like osteoarthritis and fibromyalgia) and Statement 22 (discharge back to primary care when inflammatory disease stable). Rheumatologists were not asked why they rated statements as they did. Importantly, neither of the statements were derived from the literature and were generated, as is appropriate, in the first round of the rheumatologist consensus exercise.¹ Assessment and management of non-inflammatory conditions is within scope of rheumatology training;¹⁰ however, rheumatologists in secondary care rheumatology services accept referrals for non-inflammatory conditions far less frequently than private practice rheumatologists (43% versus 97%).¹⁰ Since rheumatologist staffing levels in publicly funded rheumatology services in Aotearoa New Zealand are well below recommended levels,^11,12 rheumatology services may be making triage decisions to match demand with service capacity. Importantly, best practice recommended care for non-inflammatory conditions may not require a rheumatologist. For example, the best practice management for knee osteoarthritis includes education, exercise and weight loss,¹³ which can be provided by a variety of healthcare professionals and may be best coordinated in appropriately resourced primary care.¹⁴ Statement 22 (discharge back to primary care when stable) was not derived from the literature but generated during the first round of consensus exercise.^1,15 Given this, it is perhaps less surprising that rheumatologists had varying views on this statement, and that service user participants in this survey did not support this statement. Transfer of care back to primary care from a rheumatology service has been framed as a mechanism of managing high demand for rheumatology services or to reduce costs through care in primary care. However, evidence suggests that costs are not reduced and quality of care for patients is lower when chronic inflammatory conditions are not managed in secondary care.¹⁶ Regardless of reasons behind these statements, given lack of consensus by rheumatologists and rheumatology service users these statements were not included in a statement set describing the minimum service expectations. These issues can be further considered at a health system level, or perhaps at a local level where services can be configured to suit community requirements and expectations, with meaningful consideration made as to adequate resourcing venues in order to best meet community health needs.

There were two statements that reached 80% agreement/consensus from one of rheumatologists¹ or service users, namely Statement 14 (provision of an infusion service, rheumatologists only) and telemedicine, or virtual visits by telephone or video, as a care option (Statement 21, service users only). Rheumatologists agreed that an infusion service for biologic medications was needed in both large and small DHB rheumatology services.¹ Some participants in the service users survey provided free-text comments indicating that they were not aware that such a service would be needed. In Aotearoa New Zealand there are three approved and funded intravenous biologic medicines for IRD (infliximab, rituximab and tocilizumab). These, as well as other intravenous agents such as cyclophosphamide, require a day-stay infusion service. People receiving these medications for IRD can attend an infusion service that also provides care to people referred from other medical specialist services. On balance, despite lack of consensus from service users, we suggest an infusion service should be part of publicly funded rheumatology secondary care, and this statement was included in the statement set. Free-text comments suggesting that nurse-led care is from nurses with sufficient training would suggest nursing staff in infusion centres should have some working knowledge of IRD. Telemedicine, or virtual visits by telephone or video, as a care option (Statement 21) did not gain consensus for inclusion by rheumatologists¹ but over 80% of service users agreed this should be available. Rheumatologists may have concerns about telemedicine direct to patients approaches due to unresolved issues around technology use, and evidence base about how to implement and maintain optimal patient outcomes.^17,18 Patients using telemedicine services report finding this satisfactory in some clinical settings such as when disease well controlled, education or medication review are the main focus and when the patient knows their rheumatologist.^19,20 While the clinically appropriate circumstances for telemedicine in rheumatology care requires further clarification, based on consensus from service users, this statement was included in the statement set.

The survey results confirm the findings of our previous study,³ that nurses are a highly valued part of specialist rheumatology services. The free-text comments provided some more nuanced insights into the views of service users, specifically that nurses should not replace specialist rheumatologist care. This would be consistent with recommendations of how nurses can work in rheumatology.²¹ Te Kaunihera Tapuhi o Aotearoa, the Nursing Council of New Zealand has clear guidelines about assessing scope of practice for nursing at the level of enrolled nurse, registered nurse and nurse practitioner. Health New Zealand – Te Whatu Ora may wish to provide national-level guidance about the role and scope of rheumatology nursing practice in Aotearoa New Zealand, as, to date, this does not seem to have been clearly defined. Examples could include that nurse consultations are used only alternately with rheumatologist consultations, or that a rheumatologist consults on all nurse-led visits, or that nurse visits only occur during specific care periods (when stable/remission/low disease activity), or for specific care needs (teaching self-injections for medication administration). Importantly, people with IRD highly value rheumatology nursing care and this should be accessible, in some way, in all publicly funded rheumatology secondary care services in Aotearoa New Zealand.

This study must be interpreted in context of its strengths and limitations. The authors who are rheumatologists confirm that the survey participants had a range and frequency of IRD similar to that seen in rheumatology practice and the majority had been using rheumatology services for more than 5 years. This seems representative of most clinic profiles. Additionally, responses were received from throughout the country. Other strengths include a national scope and dissemination via a non-governmental organisation. These are also potential limitations, as an open recruitment strategy means we cannot report a response rate, and the dissemination via Arthritis New Zealand and social media may lead to responses only from people with prior association with Arthritis New Zealand and those active in social media. We also note that the survey sample is only a very small number of potentially eligible participants, which must number in the thousands. Our study could be criticised for not inviting service users to equal participation in a service development initiative and rather asked service user opinion on previously identified statements of care. This work extends previous work with people with IRD and the service statements from literature were from international evidence-based recommendations. Anonymous survey participation meant service users could report their views without any risk; however, we cannot verify or further explore the comments provided in free text. In seeking service user views, we asked about services that some participants may not have encountered or considered (such as rheumatologist and rheumatology nurse FTE required per head of population). Another limitation is that service “use” was not defined and therefore we do not know what extent of services participants engaged with—this could vary from one appointment with a rheumatologist to many visits with rheumatologists, nurses and other healthcare professionals over many years. A final limitation of our study is that the views of another key stakeholder in secondary specialist rheumatology services have not been included: the views of general practitioners, a key referrer to rheumatology services. Future service development research could focus on the needs of general practitioners in providing and co-ordinating care for people with IRDs.

In conclusion, we report that people in Aotearoa New Zealand with IRD who use rheumatology services agreed with the majority of the statements of service components, with some caveats. A statement set describing the minimum service expectations for publicly funded rheumatology secondary care in Aotearoa New Zealand has been developed (Appendix 4). The statement set includes three principles of care and 21 statements organised into 1) staffing (3 statements), 2) nursing care (4 statements), 3) care processes, delivery and services (9 statements), 4) allied health services (3 statements), and 5) rheumatoid arthritis care (2 statements). This proposal has been endorsed by Arthritis New Zealand. The New Zealand Rheumatology Association also provided endorsement of these statements, however, they requested an addendum suggesting more pragmatic rheumatologist staffing ratios, which are more achievable in the short to medium term. This service proposal has been used as a basis for a stocktake of rheumatology services across Aotearoa New Zealand. These data can then be used by individual rheumatology services or by Health New Zealand – Te Whatu Ora to inform priorities for rheumatology service improvement and direct training priorities for the national rheumatology workforce.

View Appendices.