This study was conducted to evaluate the ability of risk assessment to predict healthcare resource utilisation (HCRU), costs, treatments, health-related quality of life (HRQoL) and survival in patients diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH).

Retrospective observational study.

Pulmonary hypertension referral centre in the UK.

Adults diagnosed with CTEPH between 1 January 2012 and 30 June 2019 were included. Cohorts were retrospectively defined for operated patients (received pulmonary endarterectomy (PEA)) and not operated; further subgroups were defined based on risk score (low, intermediate or high risk for 1-year mortality) at diagnosis.

Demographics, clinical characteristics, comorbidities, treatment patterns, HRQoL, HCRU, costs and survival outcomes were analysed.

Overall, 683 patients were analysed (268 (39%) operated; 415 (61%) not operated). Most patients in the operated and not-operated cohorts were intermediate risk (63%; 53%) or high risk (23%; 31%) at diagnosis. Intermediate-risk and high-risk patients had higher HCRU and costs than low-risk patients. Outpatient and accident and emergency visits were lower postdiagnosis for both cohorts and all risk groups versus prediagnosis. HRQoL scores noticeably improved in the operated cohort post-PEA, and less so in the not-operated cohort at 6–18 months postdiagnosis. Survival at 5 years was 83% (operated) and 49% (not operated) and was lower for intermediate-risk and high-risk patients compared with low-risk patients.

Findings from this study support that risk assessment at diagnosis is prognostic for mortality in patients with CTEPH. Low-risk patients have better survival and HRQoL and lower HCRU and costs compared with intermediate-risk and high-risk patients.

The health and well-being of Aboriginal Australians is inextricably linked to culture and Country. Our study challenges deficit approaches to health inequities by seeking to examine how cultural connection, practice and resilience among Aboriginal peoples through participation in ‘cultural camps’ held on sites of cultural significance promotes health and well-being.

The study will be undertaken in close collaboration and under the governance of traditional cultural knowledge holders from Yuwaalaraay, Gamilaraay and Yuin nation groups in New South Wales, Australia. Three cultural camps will be facilitated, where participants (n=105) will engage in activities that foster a connection to culture and cultural landscapes. A survey assessing connection to culture, access to cultural resources, resilience, self-rated health and quality of life will be administered to participants pre-camp and post-camp participation, and to a comparative group of Aboriginal adults who do not attend the camp (n=105). Twenty participants at each camp (n=60) will be invited to participate in a yarning circle to explore cultural health, well-being and resilience. Quantitative analysis will use independent samples’ t-tests or ² analyses to compare camp and non-camp groups, and linear regression models to determine the impact of camp attendance. Qualitative analysis will apply inductive coding to data, which will be used to identify connections between coded concepts across the whole data set, and explore phenomenological aspects. Results will be used to collaboratively develop a ‘Model of Cultural Health’ that will be refined through a Delphi process with experts, stakeholders and policymakers.

The study has ethics approval from the Aboriginal Health and Medical Research Council (#1851/21). Findings will be disseminated through a combination of peer-reviewed articles, media communication, policy briefs, presentations and summary documents to stakeholders.