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AbstractThe lack of culturally appropriate services contributes to the low participation rate of Indigenous people in disability services. Understanding how disability is conceptualised is essential to developing culturally appropriate disability services. This study aimed to critically compare the conceptualisation of disability between Indigenous people and NSW government and non‐government disability service agencies. Indigenous and policy sources were obtained from purposive and snowball sampling. The Indigenous conceptualisation of disability was understood through representations by Indigenous spokespeople in journal and newspaper articles and audiovisual materials. The disability service agency conceptualisation of disability was represented through the annual reports and programme guidelines of the NSW government agency and seven non‐government disability agencies. The occupational justice framework guided critical analysis at the cultural interface. Four themes were identified: power and self‐determination, eligibility, otherness, and identity and labels. Data showed disability agencies promote self‐determination for Indigenous people and conceptualise disability as impairments affecting functioning, when assessing service access eligibility. Most Indigenous people do not self‐identify as disabled and are categorised as culturally different within policies. Indigenous people experience marginalisation due to their cultural identity. Indigenous people are required to conform to the conceptualisation of disability proffered by agencies to access services. To develop culturally appropriate services, agencies must collaborate with Indigenous communities.

Background  This study describes the development and trialling of the Family Life Interview (FLI), a clinical tool designed to examine sustainability of family routines.Materials and Methods  The FLI, a self‐report instrument completed by a parent within a semi‐structured practitioner – parent interview, was administered to 118 parents, with re‐test interviews being conducted with 39 parents. Rasch analysis was used to examine scale structure, evidence for construct validity and precision of measurement of the FLI items. Logistic regression was used to explore the contribution of the FLI to predicting out‐of‐home placement scores.Results  The FLI produced valid data on the sustainability of family routines. The FLI was found to be useful for predicting families at risk of seeking out‐of‐home placement driven by crisis.Conclusions  The FLI offers practitioners a psychometrically sound instrument designed to illuminate the particularity of each family's circumstances, critical to developing interventions for increasing the sustainability of family routines.

Background: Policy that supports rural allied health service delivery is important given the shortage of services outside of Australian metropolitan centres. The shortage of allied health professionals means that rural clinicians work long hours and have little peer or service support. Service delivery to rural and remote communities is further complicated because relatively small numbers of clients are dispersed over large geographic areas. The aim of this five-year multi-stage project is to generate evidence to confirm and develop evidence-based policies and to evaluate their implementation in procedures that allow a regional allied health workforce to more expeditiously respond to disability service need in regional New South Wales, Australia. Methods/Design. The project consists of four inter-related stages that together constitute a full policy cycle. It uses mixed quantitative and qualitative methods, guided by key policy concerns such as: access, complexity, cost, distribution of benefits, timeliness, effectiveness, equity, policy consistency, and community and political acceptability. Stage 1 adopts a policy analysis approach in which existing relevant policies and related documentation will be collected and reviewed. Policy-makers and senior managers within the region and in central offices will be interviewed about issues that influence policy development and implementation. Stage 2 uses a mixed methods approach to collecting information from allied health professionals, clients, and carers. Focus groups and interviews will explore issues related to providing and receiving allied health services. Discrete Choice Experiments will elicit staff and client/carer preferences. Stage 3 synthesises Stage 1 and 2 findings with reference to the key policy issues to develop and implement policies and procedures to establish several innovative regional workforce and service provision projects. Stage 4 uses mixed methods to monitor and evaluate the implementation and impact of new or adapted policies that arise from the preceding stages. Discussion. The project will provide policy makers with research evidence to support consideration of the complex balance between: (i) the equitable allocation of scarce resources; (ii) the intent of current eligibility and prioritisation policies; (iii) workforce constraints (and strengths); and (iv) the most effective, evidence-based clinical practice. © 2012 Veitch et al; licensee BioMed Central Ltd.

Australia's dispersed population in rural areas contributes to poor access to therapy services and the inability of the existing rural therapy workforce to meet demand. As a result, rural children with a developmental delay wait a long time for therapy. This paper describes participant perceptions of a therapy facilitation service model that has worked to improve access to therapy for children in these circumstances. The model, given the pseudonym 'Outback', operates in rural and remote areas of western New South Wales. 'Outback' employs local people to work under the guidance of therapists based in larger centres to provide preschool children with developmental delays with access to therapy interventions they might not otherwise receive. A two‐stage case study design involving focus groups and interviews with the director, four therapy facilitators, nine therapists, and seven carers was used. Three themes were identified as central to the service model: 1) being part of the local community; 2) developing therapy facilitator knowledge and skills; 3) improving access to therapy intervention for children in rural and remote areas. The 'Outback' model demonstrates that appropriately supported, local therapy facilitators provide a flexible workforce adjunct that expands the reach of therapists into rural and remote communities and enhances service access for children and their families.

AbstractThroughout their lives, all people, including those who have a disability, use a broad range of community services. Community services are important in assisting people with a range of impairments to participate in their communities. Vast geographic distances and a lack of therapists in rural and remote regions of Australia pose significant barriers for implementing policy aimed at supporting people with a disability. The aim of this study was to investigate the extent to which metropolitan‐formulated policy encompassed the unique geographic, demographic, and sociocultural challenges experienced by rural therapists and people with a disability in New South Wales (NSW). Twenty‐seven policy documents were reviewed and categorized into tier 1 (higher level strategic policies) and tier 2 (specific operational policies). Tier 1 policy documents provided consistent messages about the need to develop strategies and service delivery options to address geographic, cultural, and age‐related barriers facing all people in NSW including those who have a disability. Tier 2 documents revealed a lack of attention to the practical differences between implementing the policy principles in metropolitan compared with rural areas. Study findings identify that the implementation of metropolitan‐formulated policy does not always encompass the unique challenges experienced by therapists providing services to rural people with a disability and their carers. This study highlights the importance of "rural proofing" policy to consider people who live and work in rural areas.

The Blue Pacific is home to multiple small island nations, a number of which are the most isolated states in the world, making access to assistive technology (AT) a challenge. The Blue Pacific values regionalism and embraces its diverse geography, demography, cultures and economic development through collective action and sharing of institutions, resources and markets. Through the lens of Pacific AT stakeholders, this paper draws on existing data and Pacific perspectives to share the region's story about how and for whom access to AT has improved in the period from 2008 to 2019, as well as the factor's that influenced the change. We show that sustainable, local and reliable access to AT is reliant upon the right mix of ingredients. Our findings highlight the benefit of: strong advocacy, genuine partnership and growing informed demand from the People who need and provide AT; a Product range suited to each context and funders willing to support procurement; Provision opportunities to integrate AT services into existing government and non-government services; effective and consistent local training for Personnel through the availability of an appropriate training package, training provider and funding support; as well as the global, regional and national Policy frameworks that support increased actions to make AT more readily available. The Blue Pacific journey offers the global AT community unique practices and innovations for meeting AT demand and supply and strengthening sustainable local sector capacity in less resourced settings.

This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made ; BACKGROUND: Several prognostic signatures for early oestrogen receptor-positive (ER+) breast cancer have been established with a 10-year follow-up. We tested the hypothesis that signatures optimised for 0-5-year and 5-10-year follow-up separately are more prognostic than a single signature optimised for 10 years. METHODS: Genes previously identified as prognostic or associated with endocrine resistance were tested in publicly available microarray data set using Cox regression of 747 ER+/HER2- samples from post-menopausal patients treated with 5 years of endocrine therapy. RNA expression of the selected genes was assayed in primary ER+/HER2- tumours from 948 post-menopausal patients treated with 5 years of anastrozole or tamoxifen in the TransATAC cohort. Prognostic signatures for 0-10, 0-5 and 5-10 years were derived using a penalised Cox regression (elastic net). Signature comparison was performed with likelihood ratio statistics. Validation was done by a case-control (POLAR) study in 422 samples derived from a cohort of 1449. RESULTS: Ninety-three genes were selected by the modelling of microarray data; 63 of these were significantly prognostic in TransATAC, most similarly across each time period. Contrary to our hypothesis, the derived early and late signatures were not significantly more prognostic than the 18-gene 10-year signature. The 18-gene 10-year signature was internally validated in the TransATAC validation set, showing prognostic information similar to that of Oncotype DX Recurrence Score, PAM50 risk of recurrence score, Breast Cancer Index and IHC4 (score based on four IHC markers), as well as in the external POLAR case-control set. CONCLUSIONS: The derived 10-year signature predicts risk of metastasis in patients with ER+/HER2- breast cancer similar to commercial signatures. The hypothesis that early and late prognostic signatures are significantly more informative than a single signature was rejected. ; This work was supported by Breast Cancer Now working in partnership with Walk the Walk, as well as by the National Institute for Health Research Royal Marsden/ICR Biomedical Research Centre. ARB was funded by Cancer Research UK (grant number C569/A16891). The study was supported by funds from Skåne County Council's Research and Development Foundation, Governmental Funding of Clinical Research within the National Health Service (grant number ALFSKANE-350191 [to MK]), the Swedish Breast Cancer Association (BRO), the Mrs Berta Kamprad Foundation and The Inger Persson Research Foundation. IS and JC were supported by Cancer Research UK (programme grant C569/A10404).

Breast Cancer Now. Grant Number: 2015MayPR515 ; National Institute for Health Research. Grant Numbers: IS‐BRC‐1215‐20007, NF‐SI‐0513‐10076 ; Prevent Breast Cancer. Grant Numbers: GA09‐002, GA11‐002 ; Cancer Research UK. Grant Numbers: C1287/A10118, C1287/A16563, C569/A16891 ; National Institutes of Health. Grant Numbers: X01HG007492, U19 CA148065 ; Canadian Institutes of Health Research. Grant Number: GPH‐129344 ; Horizon 2020 Research and Innovation Programme. Grant Numbers: 634935, 633784 ; European Union. Grant Number: HEALTH‐F2‐2009‐223175

BACKGROUND: We examined the associations between germline variants and breast cancer mortality using a large meta-analysis of women of European ancestry. METHODS: Meta-analyses included summary estimates based on Cox models of twelve datasets using ~10.4 million variants for 96,661 women with breast cancer and 7697 events (breast cancer-specific deaths). Oestrogen receptor (ER)-specific analyses were based on 64,171 ER-positive (4116) and 16,172 ER-negative (2125) patients. We evaluated the probability of a signal to be a true positive using the Bayesian false discovery probability (BFDP). RESULTS: We did not find any variant associated with breast cancer-specific mortality at P < 5 × 10-8. For ER-positive disease, the most significantly associated variant was chr7:rs4717568 (BFDP = 7%, P = 1.28 × 10-7, hazard ratio [HR] = 0.88, 95% confidence interval [CI] = 0.84-0.92); the closest gene is AUTS2. For ER-negative disease, the most significant variant was chr7:rs67918676 (BFDP = 11%, P = 1.38 × 10-7, HR = 1.27, 95% CI = 1.16-1.39); located within a long intergenic non-coding RNA gene (AC004009.3), close to the HOXA gene cluster. CONCLUSIONS: We uncovered germline variants on chromosome 7 at BFDP < 15% close to genes for which there is biological evidence related to breast cancer outcome. However, the paucity of variants associated with mortality at genome-wide significance underpins the challenge in providing genetic-based individualised prognostic information for breast cancer patients. ; BCAC is funded by Cancer Research UK [C1287/A16563 and C1287/A10118], the European Union's Horizon 2020 Research and Innovation Programme (Grant numbers 634935 and 633784 for BRIDGES and B-CAST, respectively), and by the European Community's Seventh Framework Programme under grant agreement number 223175 (Grant number HEALTH-F2-2009-223175) (COGS).

Stratification of women according to their risk of breast cancer based on polygenic risk scores (PRSs) could improve screening and prevention strategies. Our aim was to develop PRSs, optimized for prediction of estrogen receptor (ER)-specific disease, from the largest available genome-wide association dataset and to empirically validate the PRSs in prospective studies. The development dataset comprised 94,075 case subjects and 75,017 control subjects of European ancestry from 69 studies, divided into training and validation sets. Samples were genotyped using genome-wide arrays, and single-nucleotide polymorphisms (SNPs) were selected by stepwise regression or lasso penalized regression. The best performing PRSs were validated in an independent test set comprising 11,428 case subjects and 18,323 control subjects from 10 prospective studies and 190,040 women from UK Biobank (3,215 incident breast cancers). For the best PRSs (313 SNPs), the odds ratio for overall disease per 1 standard deviation in ten prospective studies was 1.61 (95%CI: 1.57-1.65) with area under receiver-operator curve (AUC) = 0.630 (95%CI: 0.628-0.651). The lifetime risk of overall breast cancer in the top centile of the PRSs was 32.6%. Compared with women in the middle quintile, those in the highest 1% of risk had 4.37- and 2.78-fold risks, and those in the lowest 1% of risk had 0.16- and 0.27-fold risks, of developing ER-positive and ER-negative disease, respectively. Goodness-of-fit tests indicated that this PRS was well calibrated and predicts disease risk accurately in the tails of the distribution. This PRS is a powerful and reliable predictor of breast cancer risk that may improve breast cancer prevention programs. ; Novartis ; Eli Lilly and Company ; AstraZeneca ; AbbVie ; Pfizer UK ; Celgene ; Eisai ; Genentech ; Merck Sharp and Dohme ; Roche ; Cancer Research UK ; Government of Canada ; Array BioPharma ; Genome Canada ; National Institutes of Health ; European Commission ; Ministère de l'Économie, de l'Innovation et des Exportations du Québec ; Seventh Framework Programme ; Canadian Institutes of Health Research