Developing a digital intervention for cancer survivors: an evidence-, theory- and person-based approach

This paper illustrates a rigorous approach to developing digital interventions using an evidence-, theory- and person-based approach. Intervention planning included a rapid scoping review which identified cancer survivors’ needs, including barriers and facilitators to intervention success. Review evidence (N=49 papers) informed the intervention’s Guiding Principles, theory-based behavioural analysis and logic model. The intervention was optimised based on feedback on a prototype intervention through interviews (N=96) with cancer survivors and focus groups with NHS staff and cancer charity workers (N=31). Interviews with cancer survivors highlighted barriers to engagement, such as concerns about physical activity worsening fatigue. Focus groups highlighted concerns about support appointment length and how to support distressed participants. Feedback informed intervention modifications, to maximise acceptability, feasibility and likelihood of behaviour change. Our systematic method for understanding user views enabled us to anticipate and address important barriers to engagement. This methodology may be useful to others developing digital interventions

Walk with Me: a protocol for a pilot RCT of a peer-led walking programme to increase physical activity in inactive older adults

Background: Levels of physical activity decline with age. Some of the most disadvantaged individuals in society, such as those from lower socio-economic position, are also the most inactive. Increasing physical activity levels, particularly among those most inactive, is a public health priority. Peer-led physical activity interventions may offer a model to increase physical activity in the older adult population. This study aims to test the feasibility of a peer-led, multicomponent physical activity intervention in socio-economically disadvantaged community dwelling older adults. Methods: The Medical Research Council framework for developing and evaluating complex interventions will be used to design and test the feasibility of a randomised controlled trial (RCT) of a multicomponent peer-led physical activity intervention. Data will be collected at baseline, immediately after the intervention (12 weeks) and 6 months after baseline measures. The pilot RCT will provide information on recruitment of peer mentors and participants and attrition rates, intervention fidelity, and data on the variability of the primary outcome (minutes of moderate to vigorous physical activity measured with an accelerometer). The pilot trail will also assess the acceptability of the intervention and identify potential resources needed to undertake a definitive study. Data analyses will be descriptive and include an evaluation of eligibility, recruitment, and retention rates. The findings will be used to estimate the sample size required for a definitive trial. A detailed process evaluation using qualitative and quantitative methods will be conducted with a variety of stakeholders to identify areas of success and necessary improvements. Discussion: This paper describes the protocol for the ‘Walk with Me’ pilot RCT which will provide the information necessary to inform the design and delivery of a fully powered trial should the Walk with Me intervention prove feasible

Assessing the perceived impact of post Minamata amalgam phase down on oral health inequalities: a mixed-methods investigation

Background: Data from countries that have implemented a complete phase out of dental amalgam following the Minamata agreement suggest increased costs and time related to the placement of alternatives with consumers absorbing the additional costs. This aim of this study was to investigate the impact of a complete phase out of dental amalgam on oral health inequalities in particular for countries dependent on state run oral health services. Methods: A mixed methods component design quantitative and qualitative study in the United Kingdom. The quantitative study involved acquisition and analysis of datasets from NHS Scotland to compare trends in placement of dental amalgam and a survey of GDPs in Yorkshire, UK. The qualitative study involved analysis of the free text of the survey and a supplementary secondary analysis of semi-structured interviews and focus groups with GDPs (private and NHS), dental school teaching leads and NHS dental commissioners to understand the impact of amalgam phase down on oral health inequalities. Results: Time-trends for amalgam placement showed that there was a significant (p < 0.05) reduction in amalgam use compared with composites and glass ionomers. However dental amalgam still represented a large proportion (42%) of the restorations (circa 1.8 million) placed in the 2016–2017 financial year. Survey respondents suggest that direct impacts of a phase down were related to increased costs and time to place alternative restorations and reduced quality of care. This in turn would lead to increased tooth extractions, reduced access to care and privatisation of dental services with the greatest impact on deprived populations. Conclusion: Amalgam is still a widely placed material in state run oral health services. The complete phase down of dental amalgam poses a threat to such services and threatens to widen oral health inequalities. Our data suggest that a complete phase out is not currently feasible unless appropriate measures are in place to ensure cheaper, long-lasting and easy to use alternatives are available and can be readily adopted by primary care oral health providers

Maximising the availability and use of high quality evidence for policymaking:Collaborative, targeted and efficient evidence reviews

Abstract A number of barriers have been identified to getting evidence into policy. In particular, a lack of policy relevance and lack of timeliness have been identified as causing tension between researchers and policy makers. Rapid reviews are used increasingly as an approach to address timeliness, however, there is a lack of consensus on the most effective review methods and they do not necessarily address the need of policy makers. In the course of our work with the Scottish Government’s Review of maternity and neonatal services we developed a new approach to evidence synthesis, which this paper will describe. We developed a standardised approach to produce collaborative, targeted and efficient evidence reviews for policy making. This approach aimed to ensure the reviews were policy relevant, high quality and up-to-date, and which were presented in a consistent, transparent, and easy to access format. The approach involved the following stages: 1) establishing a review team with expertise both in the topic and in systematic reviewing, 2) clarifying the review questions with policy makers and subject experts (i.e., health professionals, service user representatives, researchers) who acted as review sponsors, 3) developing review protocols to systematically identify quantitative and qualitative review-level evidence on effectiveness, sustainability and acceptability; if review level evidence was not available, primary studies were sought, 4) agreeing a framework to structure the analysis of the reviews around a consistent set of key concepts and outcomes; in this case a published framework for maternal and newborn care was used, 5) developing an iterative process between policy makers, reviewers and review sponsors, 6) rapid searches and retrieval of literature, 7) analysis of identified literature which was mapped to the framework and included review sponsor input, 8) production of recommendations mapped to the agreed framework and presented as ‘summary topsheets’ in a consistent and easy to read format. Our approach has drawn on different components of pre-existing rapid review methodology to provide a rigorous and pragmatic approach to rapid evidence synthesis. Additionally, the use of a framework to map the evidence helped structure the review questions, expedited the analysis and provided a consistent template for recommendations, which took into account the policy context. We therefore propose that our approach (described in this paper) can be described as producing collaborative, targeted and efficient evidence reviews for policy makers

Assessing the format and content of journal published and non-journal published rapid review reports : A comparative study

BACKGROUND: As production of rapid reviews (RRs) increases in healthcare, knowing how to efficiently convey RR evidence to various end-users is important given they are often intended to directly inform decision-making. Little is known about how often RRs are produced in the published or unpublished domains, and what and how information is structured. OBJECTIVES: To compare and contrast report format and content features of journal-published (JP) and non-journal published (NJP) RRs. METHODS: JP RRs were identified from key databases, and NJP RRs were identified from a grey literature search of 148 RR producing organizations and were sampled proportionate to cluster size by organization and product type to match the JP RR group. We extracted and formally compared 'how' (i.e., visual arrangement) and 'what' information was presented. RESULTS: We identified 103 RRs (52 JP and 51 NJP) from 2016. A higher percentage of certain features were observed in JP RRs compared to NJP RRs (e.g., reporting authors; use of a traditional journal article structure; section headers including abstract, methods, discussion, conclusions, acknowledgments, conflict of interests, and author contributions; and use of figures (e.g., Study Flow Diagram) in the main document). For NJP RRs, a higher percentage of features were observed (e.g., use non-traditional report structures; bannering of executive summary sections and appendices; use of typographic cues; and including outcome tables). NJP RRs were more than double in length versus JP RRs. Including key messages was uncommon in both groups. CONCLUSIONS: This comparative study highlights differences between JP and NJP RRs. Both groups may benefit from better use of plain language, and more clear and concise design. Alternative innovative formats and end-user preferences for content and layout should be studied further with thought given to other considerations to ensure better packaging of RR results to facilitate uptake into policy and practice. STUDY REGISTRATION: The full protocol is available at: https://osf.io/29xvk/

Crop Updates 2009 - Cereals

This session covers twenty seven papers from different authors: PLENARY 1. Building soil carbon for productivity and implications for carbon accounting, Jeff Baldock, CSIRO Land and Water, Adelaide, SA 2. Fact or Fiction: Who is telling the truth and how to tell the difference, Doug Edmeades, agKnowledge Ltd, Hamilton 3. Four decades of crop sequence trials in Western Australia, Mark Seymour,Department of Agriculture and Food BREAK CROPS 4. 2008 Break Crops survey Report, Paul Carmody,Development Officer, Department of Agriculture and Food 5. Attitudes of Western Australian wheatbelt growers to ‘Break Crops’, Paul Carmody and Ian Pritchard, Development Officers, Department of Agriculture and Food 6. The value of organic nitrogen from lupins, Alan Meldrum, Pulse Australia 7.The area of break crops on farm: What farmers are doing compared to estimates based on maximising profit, Michael Robertson and Roger Lawes,CSIRO Floreat, Rob Sands,FARMANCO Farm Consultants, Peter White,Department of Agriculture and Food, Western Australia, Felicity Byrne and Andrew Bathgate,Farming Systems Analysis CROP SPECIFIC Breeding 8. Identification of WALAB2014 as a potential albus lupin variety for northern agricultural region of Western Australia, Kedar Adhikari, Department of Agriculture and Food 9. Enhancement of black spot resistance in field pea, Kedar Adhikari, Tanveer Khan, Stuart Morgan and Alan Harris, Department of Agriculture and Food 10. Desi chickpea breeding: Evaluation of advanced line, Khan, TN1, Harris, A1, Gaur, P2, Siddique, KHM3, Clarke, H4, Turner, NC4, MacLeod, W1, Morgan, S1 1Department of Agriculture and Food, Western Australia, 2International Crop Research Institute for the Semi Arid Tropics (ICRISAT), 3The University of Western Australia, 4Centre for Legumes in Mediterranean Agriculture 11. Pulse Breeding Australia-Australian Field Pea Improvement Program (AFPIP), Ian Pritchard1, Chris Veitch1, Stuart Morgan1, Alan Harris1 and Tony Leonforte 2 1 Department of Agriculture and Food, Western Australia, 2 Department off Primary Industries, Victoria Disease 12. Interaction between wheat varieties and fungicides to control stripe rust for grain and quality, Kith Jayasena, Geoff Thomas, Rob Loughman, Kazue Tanaka and Bill MacLeod, Department of Agriculture and Food 13. Findings of canola disease survey 2008 and its implications for better disease management in 2009, Ravjit Khangura, WJ MacLeod, P White, P Carmody and M Amjad, Department of Agriculture and Food 14. Combating wheat leaf diseases using genome sequencing and functional genomics, Richard Oliver, Australian Centre for Necrotrophic Fungal Pathogens, Murdoch University 15. Distribution and survival of wheat curl mite (Aceria tosichella), vector of Wheat Streak Mosaic Virus, in the WA grainbelt during 2008, Dusty Severtson, Peter Mangano, John Botha and Brenda Coutts, Department of Agriculture and Food 16. Partial resistance to Stagonspora (Septoria) Partial resistance to Stagonospora (Septoria) nodorum blotch and response to fungicide in a severe epidemic scenario, Manisha Shankar1, Richard Oliver2, Kasia Rybak2and Rob Loughman1 1Department of Agriculture and Food, Western Australia, 2Australian Centre for Necrotrophic Fungal Pathogens, Murdoch University, Western Australia 17. Black pod syndrome in lupins can be reduced by regular insecticide sprays, Peter White and Michael Baker,Department of Agriculture and Food Variety performance 18. Incorporating new herbicide tolerant juncea canola into low rainfall cropping systems in Western Australia, Mohammad Amjad, Department of Agriculture and Food 19. Varietal differences in germ end staining of barley, Andrea Hills,Department of Agriculture and Food 20. Wheat variety performance in the Central Agricultural Region in 2008, Shahajahan Miyan, Department of Agriculture and Food 21. Barley variety identification using DNA fingerprinting, Peter Portmann, Agriconnect, Perth WA Dr Nicole Rice, Southern Cross University, Lismore NSW Prof Robert Henry, Southern Cross University, Lismore NSW 22. Forecast disease resistance profile for the Western Australian barley crop over the next three years, Jeff J. Russell, Department of Agriculture and Food 23. Malting barley varieties differ in their flowering date and their response to changes in sowing date, BH Paynter and Jeff J. Russell,Department of Agriculture and Food 24. Market development for new barley varieties, Linda Price,Barley Australia 25. Response of wheat varieties to sowing time at Mt Barker, Katanning and Newdegate in 2008, Brenda Shackley and Vicki Scanlan,Department of Agriculture and Food 26. Flowering dates of wheat varieties in 2008 at three locations in Western Australia, Darshan Sharma, Brenda Shackley and Christine Zaicou-Kunesch, Department of Agriculture and Food 27. Agronomic responses of new wheat varieties in the norther agricultural region in 2008, Christine Zaicou-Kunesch, Department of Agriculture and Foo

Crop Updates 2002 - Oilseeds

This session covers twenty seven papers from different authors: 1. Forward and acknowledgements, Dave Eksteen, ACTING MANAGER OILSEEDS PRODUCTIVITY AND INDUSTRY DEVELOPMENT Department of Agriculture PLENARY SESSION 2. GMO canola - Track record in Canada, K. Neil Harker and George W. Clayton,Agriculture and Agri-Food Canada, Lacombe Research Centre, Lacombe, Alberta, R. Keith Downey, Agriculture and Agri-Food Canada, Saskatoon Research Centre, Saskatoon, Saskatchewan 3. GMO canola – Prospects in Western Australia farming systems, Keith Alcock, Crop Improvement Institute, Department of Agriculture 4. Diamondback moth (DBM) in canola, Kevin Walden, Department of Agriculture CANOLA AGRONOMY 5. Getting the best out of canola in the low rainfall central wheatbelt, Bevan Addison and Peter Carlton, Elders Ltd 6. Canola variety performance in Western Australia, Kevin Morthorpe, Stephen Addenbrooke and Alex Ford, Pioneer Hi-Bred Australia P/L 7. Relative performance of new canola varieties in Department of Agriculture variety trials in 2000 and 2001, S. Hasan Zaheer, GSARI, Department of Agriculture, G. Walton, Crop Improvement Institute, Department of Agriculture 8. Which canola cultivar should I sow? Imma Farré, CSIRO Plant Industry, Floreat, Bill Bowden,Western Australia Department of Agriculture 9. The effect of seed generation and seed source on yield and quality of canola, Paul Carmody, Department of Agriculture 10. The accumulation of oil in Brassica species, J.A. Fortescue and D.W. Turner, Plant Biology, Faculty of Natural and Agricultural Sciences, The University of Western Australia, B. Tan, PO Box 1249, South Perth 11. Potential and performance of alternative oilseeds in WA, Margaret C. Campbell, Centre for Legumes in Mediterranean Agriculture 12. Comparison of oilseed crops in WA, Ian Pritchard and Paul Carmody, Department of Agriculture, Centre for Cropping Systems, Margaret Campbell, Centre for Legumes in Mediterranean Agriculture 13. Identifying constraints to canola production, Dave Eksteen, Canola Development Officer, Department of Agriculture 14. Boron – should we be worried about it? Richard W. BellA, K. FrostA, Mike WongB, and Ross BrennanC , ASchool of Environmental Science, Murdoch University, BCSIRO Land and Water, CDepartment of Agriculture PEST AND DISEASE 15. Yield losses caused when Beet Western Yellows Virus infects canola, Roger Jones and Jenny Hawkes, Department of Agriculture, and Centre for Legumes in Mediterranean Agriculture 16. Influence of climate on aphid outbreaks and virus epidemics in canola, Debbie Thackray, Jenny Hawkes and Roger Jones, Centre for Legumes in Mediterranean Agriculture and Department of Agriculture 17. The annual shower of blackleg ascospores in canola: Can we predict and avoid it? Moin U. Salam, Ravjit K. Khangura, Art J. Diggle and Martin J. Barbetti, Department of Agriculture 18. Environmental influences on production and release of ascospores of blackleg and their implications in blackleg management in canola, Ravjit K. Khangura, Martin J. Barbetti , Moin U. Salam and Art J. Diggle, Department of Agriculture 19. WA blackleg resistance ratings on canola varieties form 2002, Ravjit Khangura, Martin J. Barbetti and Graham Walton, Department of Agriculture 20. Bronzed field beetle management in canola, Phil Michael, Department of Agriculture 21. DBM control in canola: Aerial versus boom application, Paul Carmody, Department of Agriculture 22. Effect of single or multiple spray trearments on the control of Diamondback moth (Plutella xylostella) and yield of canola at Wongan Hills, Françoise Berlandier, Paul Carmody and Christiaan Valentine, Department of Agriculture ESTABLISHMENT 23. GrainGuardÔ - A biosecurity plan for the canola industry, Greg Shea, Department of Agriculture 24. Large canola seed is best, particularly for deep sowing, Glen Riethmuller, Rafiul Alam, Greg Hamilton and Jo Hawksley, Department of Agriculture 25. Canola establishment with seed size, tines and discs, with and without stubble, Glen Riethmuller, Rafiul Alam, Greg Hamilton and Jo Hawksley, Department of Agriculture WEEDS 26. Role of Roundup ReadyÒ canola in the farming system, Art Diggle1, Patrick Smith2, Paul Neve3, Felicity Flugge4, Amir Abadi5, Stephen Powles3 1Department of Agriculture, 2CSIRO, Sustainable Ecosystems, 3Western Australian Herbicide Resistance Initiative, University of Western Australia, 4Centre for Legumes in Mediterranean Agriculture, University of Western Australia, 5Touchstone Consulting, Mt Hawthorn FEED 27. Getting value from canola meals in the animal feed industries: Aquaculture, Brett Glencross and John Curnow, Department of Fisheries - Government of Western Australia and Wayne Hawkins, Department of Agricultur

Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups

© 2015, The Author(s). Background: Patient-centered health care for children with inborn errors of metabolism (IEM) and their families is important and requires an understanding of patient experiences, needs, and priorities. IEM-specific patient groups have emerged as important voices within these rare disease communities and are uniquely positioned to contribute to this understanding. We conducted qualitative interviews with IEM patient group representatives to increase understanding of patient and family experiences, needs, and priorities and inform patient-centered research and care. Methods: We developed a sampling frame of patient groups representing IEM disease communities from Canada, the United States, and United Kingdom. With consent, we interviewed participants to explore their views on experiences, needs, and outcomes that are most important to children with IEM and their families. We analyzed the data using a qualitative descriptive approach to identify key themes and sub-themes. Results: We interviewed 18 organizational representatives between February 28 and September 17, 2014, representing 16 IEMs and/or disease categories. Twelve participants voluntarily self-identified as parents and/or were themselves patients. Three key themes emerged from the coded data: managing the uncertainty associated with raising and caring for a child with a rare disease; challenges associated with the affected child’s life transitions, and; the collective struggle for improved outcomes and interventions that rare disease communities navigate. Conclusion: Health care providers can support children with IEM and their families by acknowledging and reducing uncertainty, supporting families through children’s life transitions, and contributing to rare disease communities’ progress toward improved interventions, experiences, and outcomes.The study was partially funded by the Rare Disease Foundation (RDF). In-kind support was provided by the Canadian Inherited Metabolic Diseases Research Network (CIMDRN) which is funded by the Canadian Institutes of Health Research (CIHR, grant TR3-119197) and administered by the University of Ottawa

Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease.

Improvements in health care for children with chronic diseases must be informed by research that emphasizes outcomes of importance to patients and families. To support a program of research in the field of rare inborn errors of metabolism (IEM), we conducted a broad scoping review of primary studies that: (i) focused on chronic pediatric diseases similar to IEM in etiology or manifestations and in complexity of management; (ii) reported patient- and/or family-oriented outcomes; and (iii) measured these outcomes using self-administered tools.We developed a comprehensive review protocol and implemented an electronic search strategy to identify relevant citations in Medline, EMBASE, DARE and Cochrane. Two reviewers applied pre-specified criteria to titles/abstracts using a liberal accelerated approach. Articles eligible for full-text review were screened by two independent reviewers with discrepancies resolved by consensus. One researcher abstracted data on study characteristics, patient- and family-oriented outcomes, and self-administered measures. Data were validated by a second researcher.4,118 citations were screened with 304 articles included. Across all included reports, the most-represented diseases were diabetes (35%), cerebral palsy (23%) and epilepsy (18%). We identified 43 unique patient- and family-oriented outcomes from among five emergent domains, with mental health outcomes appearing most frequently. The studies reported the use of 405 independent self-administered measures of these outcomes.Patient- and family-oriented research investigating chronic pediatric diseases emphasizes mental health and appears to be relatively well-developed in the diabetes literature. Future research can build on this foundation while identifying additional outcomes that are priorities for patients and families