Peer Connect Service for people with pulmonary fibrosis in Australia: Participants' experiences and process evaluation.

BACKGROUND AND OBJECTIVE: People living with pulmonary fibrosis (PF) report unmet needs for information and support. Lung Foundation Australia (LFA) have developed the Peer Connect Service to facilitate telephone support for people with PF across Australia. This project documented the experiences of participants and the resources required to support the service. METHODS: Consenting participants took part in semi-structured interviews by telephone. Primary peers (peers who agreed to initiate contact) and secondary peers (eligible patients who sought a peer match) were interviewed. Thematic analysis was undertaken by two independent researchers. Data were collected on the number of matches and contacts required to establish each match. RESULTS: Interviews were conducted with 32 participants (16 primary peers, 15 secondary peers and 1 who was both), aged from 53 to 89 years with 56% being male. Major themes included the value of shared experiences, providing mutual support and the importance of shared personal characteristics (e.g. gender and hobbies) in allowing information and emotional support needs to be met. Participants saw face-to-face contact with peers as highly desirable whilst acknowledging the practical difficulties. Primary peers were cognizant that their role was not to provide medical advice but to listen and share experiences. In the 12-month period, 60 peer matches were made, each match requiring a minimum of seven staff contacts. CONCLUSION: The Peer Connect Service provides a unique opportunity for people with PF to share experiences and offer mutual support. This telephone matching model may be useful in providing peer support for individuals with rare diseases who are geographically dispersed.

Stochastic Modeling of Groundwater Extractions over a Data-Sparse Region of Australia.

Setting limit on groundwater extractions is important to ensure sustainable groundwater management. Lack of extraction data can affect interpretations of historical pressure changes, predictions of future impacts, accuracy of groundwater model calibration, and identification of sustainable management options. Yet, many groundwater extractions are unmetered. Therefore, there is a need for models that estimate extraction rates and quantify model outputs uncertainties arising due to a lack of data. This paper develops such a model within the Generalized Linear Modeling (GLM) framework, using a case study of stock and domestic (SD) extractions in the Surat Cumulative Management Area, a predominantly cattle farming region in eastern Australia. Various types of extraction observations were used, ranging from metering to analytically-derived estimates. GLMs were developed and applied to estimate the property-level extraction amounts, where observation types were weighted by perceived relative accuracy, and well usage status. The primary variables found to affect property-level extraction rates were: yearly average temperature and rainfall, pasture, property area, and number of active wells; while variables most affecting well usage were well water electrical conductivity, spatial coordinates, and well age. Results were compared with analytical estimates of property-level extraction, illustrating uncertainties and potential biases across 20 hydrogeological units. Spatial patterns of mean extraction rates (and standard deviations) are presented. It is concluded that GLMs are well suited to the problem of extraction rate estimation and uncertainty analysis, and are ideal when model verification is supported by measurement of a random sample of properties.

Disease progression in idiopathic pulmonary fibrosis with mild physiological impairment: analysis from the Australian IPF registry.

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive and fatal fibrosing lung disease of unknown cause. The advent of anti-fibrotic medications known to slow disease progression has revolutionised IPF management in recent years. However, little is known about the natural history of IPF patients with mild physiological impairment. We aimed to assess the natural history of these patients using data from the Australian IPF Registry (AIPFR). METHODS: Using our cohort of real-world IPF patients, we compared FVC criteria for mild physiological impairment (FVC ≥ 80%) against other proposed criteria: DLco ≥ 55%; CPI ≤40 and GAP stage 1 with regards agreement in classification and relationship with disease outcomes. Within the mild cohort (FVC ≥ 80%), we also explored markers associated with poorer prognosis at 12 months. RESULTS: Of the 416 AIPFR patients (mean age 70.4 years, 70% male), 216 (52%) were classified as 'mild' using FVC ≥ 80%. There was only modest agreement between FVC and DLco (k = 0.30), with better agreement with GAP (k = 0.50) and CPI (k = 0.48). Patients who were mild had longer survival, regardless of how mild physiologic impairment was defined. There was, however, no difference in the annual decline in FVC% predicted between mild and moderate-severe groups (for all proposed criteria). For patients with mild impairment (n = 216, FVC ≥ 80%), the strongest predictor of outcomes at 12 months was oxygen desaturation on a 6 min walk test. CONCLUSION: IPF patients with mild physiological impairment have better survival than patients with moderate-severe disease. Their overall rate of disease progression however, is comparable, suggesting that they are simply at different points in the natural history of IPF disease.

Assessing pulmonary disease and response to therapy: which test?

Because 75% of deaths attributable to sarcoidosis occur due to progressive respiratory failure, the staging of pulmonary disease and the accurate identification of changes in disease severity with time are both an essential part of clinical management. Historically, pulmonary function tests (PFTs) and chest radiographic appearances have been applied to both goals. Several additional investigations have been proposed as markers of active disease, including gallium scanning, positron emission tomographic (PET) scanning, high-resolution computed tomographic (HRCT) scanning, bronchoalveolar lavage, and candidate biomarkers such as serum angiotensin-converting enzyme (ACE) levels and serum interleukin (IL)-2 receptor levels. However, none of these tests has been shown to add value to PFTs and chest radiography, either in staging disease at baseline or in detecting change, although PET scanning merits further evaluation with particular reference to the suppression of activity with treatment in irreversible disease. Furthermore, no single pulmonary function or chest radiographic variable in isolation is accurate in all cases in this heterogeneous disease. Thus the evaluation of pulmonary disease in sarcoidosis is a multidisciplinary exercise, with the integration of PFTs (including measures of gas transfer) and chest radiographic findings (best assessed using simple user-friendly grading systems) with symptomatic severity and change.