Patient participation in defining best-practice rheumatology service provision in Aotearoa New Zealand: a qualitative study with service consumers.

BACKGROUND: Aotearoa New Zealand (AoNZ) has no agreed models for rheumatology service provision in government-funded health care. We aimed to describe what people with inflammatory rheumatic diseases who have used rheumatology services view as being important in those services, and map these views to previously collated statements describing best practice components of rheumatology services from international recommendations. If these statements did not capture all service aspects that people with inflammatory rheumatic diseases considered important, we aimed to co-create new statements with our patient-participants. METHODS: We conducted one focus group and an interview with people with inflammatory rheumatic disease who had used a government-funded rheumatology service in the previous 5 years (patient-participants) and analysed data using thematic analysis. The research team mapped subthemes to previously collated best practice recommendations that had been included in a Delphi consensus exercise with rheumatologists in AoNZ and proposed new statements, based on patient-participant data. Patient-participant feedback on thematic analysis and the new statements led to a refining of statements. A patient-partner in the research team informed research design and data analysis. RESULTS: Patient-participants viewed it as highly valuable for rheumatology services to respect and value their experiences as people and patients, and those of their whanau (Maori word for family). They expected rheumatology services to provide the right care, at the right time. Many of the subthemes mapped to the best-practice statements. However, three new principles and three new statements were developed and refined by patient-participants. The three principles addressed valuing individuals, and their whanau (family) and their experiences, and providing a patient-focused health system that supports patient participation in decision-making and self-management, and patient education. New statements related to having a specific rheumatologist and other staff for comprehensive care, having adequate nurse staffing, and active provision of outside services and support. CONCLUSION: It was important to patients that rheumatology services demonstrated that patients and their whanau (family) were valued. The inclusion of people with rheumatic diseases who are users of rheumatology services in service development can provide valuable insights to inform how services should be delivered.

Patient age, ethnicity and waiting times determine the likelihood of non-attendance at a first specialist rheumatology assessment.

OBJECTIVE: To identify demographic and geographic factors associated with non-attendance for first specialist assessment (FSA) at a publicly funded rheumatology clinic and identify changes in service provision that might improve attendance rates. METHOD: Administrative data for 1953 new referrals over a 2-year period was collected from a New Zealand public rheumatology unit. Patient characteristics and location variables were tested for significance and odds ratios were generated to determine the relationship between non-attendance and referrals data. RESULTS: Patients in the 20-29 years age-group were least likely to attend appointments (P ≤ 0.001, OR 2.81, 95%CI 1.59-4.98). Maori and Pacific Peoples were each almost twice as likely to miss a FSA (P = 0.02, OR 1.87, 95%CI 1.11-3.15 and OR 1.89, 95%CI 1.11-3.22) as New Zealand Europeans. Non-attendance was independently associated with longer waiting times to FSA; with residential location and the uneven provision of services being strong predictors of longer waiting times (P ≤ 0.001). CONCLUSION: Non-attendance is associated with ethnicity, age and waiting times. It is likely that high deprivation influences ethnic variations in attendance but reasons for young people's non-attendance were difficult to identify. Patients domiciled further from the main rheumatology clinic were also less likely to attend. The influence of ethnicity and deprivation may be underestimated in this study as high Maori and Pacific ethnic populations live closer to well-resourced clinics. Focusing administrative resources on at-risk groups and restructuring the clinical service to improve uneven waiting times would be expected to improve attendance rates across the region.