Objective To examine available systematically collected evidence regarding prices for assistive technology (AT; e.g. disability aids and equipment) in Australia with other comparable countries. Issues of appropriate AT pricing are coming to the fore as a consequence of efforts to move to consumer-centric purchasing decisions with the National Disability Insurance Scheme (NDIS) and also in the recent aged care reforms. Methods We identified and present three sets of AT price comparisons. Two comparisons were based solely on the lowest prices advertised on the internet, and one comparison examined recommended retail prices. Variables essential to ensuring accurate comparisons, as well as significant supply-chain issues were also examined and considered in the analyses. Results The first internet-only price comparison found that overall AT prices were 38% higher in Australia compared to other countries, but did not factor in shipping and other related costs that are essential to include given that most AT is imported. The second internet-only price comparison found that overall Australian prices were 24% lower when shipping and related costs were included. The recommended retail price comparisons found that Australian prices were between 14% and 27% lower. Prices for internet-only retailers (those with no bricks-and-mortar presence) are consistently lower for all products than those sold by retailers with actual shop-fronts. Further, there is no evidence of suppliers earning supranormal profits in Australia. Conclusions The results indicate that AT prices in Australia are efficient and equitable, with no significant indicators of market failure which would require government intervention. Efforts to reduce prices through the excessive use of large-scale government procurement programs are likely to reduce diversity and innovation in AT and raise AT prices over time. Open markets and competition with centralised tracking of purchases and providers to minimise possible over-servicing/over-charging align well with the original intention of the NDIS, and are likely to yield the best outcomes for consumers at the lowest costs. What is known about the topic? Government-funded programs are used extensively to purchase AT because it is a primary enabler for people of all ages with disabilities. Perceptions of unreasonably high prices for AT in Australia are resulting in the widespread adoption of bulk purchasing and related strategies by governments. What does this paper add? Carefully undertaken systematic price comparisons between Australia and comparable Organization For Economic Cooperation and Development countries indicate that, on average, Australian prices are lower than elsewhere when delivery to Australia is taken into account. It was also found that prices at brick-and-mortar shops, with all the services they provide to ensure the appropriateness of the products provided to meet the consumers' needs and goals, are substantially higher than Internet purchases in which the consumer bears all the risks and responsibilities for outcomes. What are the implications? Overuse of government bulk purchasing and similar arrangements will lead to less diversity in the available AT products, related services and retail outlets, resulting in less choice for consumers and higher risks of poor outcomes through less focus on matching consumers with the 'right' products for their needs and goals, and ultimately higher AT prices over time as competition is reduced to a few major suppliers.

This paper describes the people, activities and methods of consumer engagement in a complex research project, and reflects on the influence this had on the research and people involved, and enablers and challenges of engagement. The 2.5-year Integrating and Deriving Evidence Experiences and Preferences (IN-DEEP) study was conducted to develop online consumer summaries of multiple sclerosis (MS) treatment evidence in partnership with a three-member consumer advisory group. Engagement methods included 6-monthly face-to-face meetings and email contact. Advisory group members were active in planning, conduct and dissemination and translational phases of the research. Engaging consumers in this way improved the quality of the research process and outputs by: being more responsive to, and reflective of, the experiences of Australians with MS; expanding the research reach and depth; and improving the researchers' capacity to manage study challenges. Advisory group members found contributing their expertise to MS research satisfying and empowering, whereas researchers gained confidence in the research direction. Managing the unpredictability of MS was a substantive challenge; the key enabler was the 'brokering role' of the researcher based at an MS organisation. Meaningfully engaging consumers with a range of skills, experiences and networks can make important and unforeseen contributions to research success.

Background and Aims: In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy. understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS. Methods: A 2-phase mixed-methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper-based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch. Results: Eighty-three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably. as a useful, understandable, and trustworthy information source. Conclusion: We describe a partnership approach to developing online evidence-based treatment information, underpinned by an in-depth understanding of consumers' information needs.

We compared face-to-face focus groups and an online forum in qualitative research with people with multiple sclerosis (MS) and family members. Although the merits and challenges of online qualitative research have been considered by others, there is limited literature directly comparing these two data collection methods for people with disability or chronic illness. Twenty-seven people participated in one of four focus groups and 33 people took part in an online forum. Demographic and MS-related characteristics were similar between the two groups, with a slight nonsignificant trend toward nonmetropolitan residence in online forum participants. There was a high level of overlap in the themes generated between groups. Participant responses in the online forum were more succinct and on-topic, yet in the focus groups interaction was greater. Online qualitative research methods can facilitate research participation for people with chronic illness or disability, yielding generally comparable information to that gathered via face-to-face methods.

BACKGROUND AND OBJECTIVE:The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study.DESIGN:Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame.RESULTS:Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up-to-date and unbiased treatment information, including practical and lifestyle-related information, was important to many. Many participants were keen to engage in a 'research partnership' with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term 'self-regulation' to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS.CONCLUSIONS:People with MS have developed a number of strategies to both find and integrate treatment information from a range of sources. Their reflections informed the development of an evidence-based consumer web site based on summaries of MS Cochrane reviews.

Heat intolerance is a significant medical problem affecting people with multiple sclerosis (MS). For people with MS, the costs of running their air conditioners are an additional disease-related expense that must be met on top of other out-of-pocket disease-related expenses. Using the results of the 2008 Keeping Cool Survey, we estimate the relative economic disadvantage faced by MS households in trying to keep cool. We find that MS households spend around four times more on keeping cool than average Australian households. Sensitivity analysis indicates that our results are robust with respect to all key inputs and parameters.

Chronic disease self-management support (CDSMS) programmes are widely advocated as an essential element of chronic disease care and have demonstrated increased engagement with self-care activities such as improving diet but may place additional strain on spouses. This study used an embedded mixed methods approach to explore the impact of CDSMS on spouses. Spouses were recruited as part of a larger randomised controlled trial to assess the efficacy of a health professional-led CDSMS programme (the Flinders Program) in older adults with multiple chronic conditions, compared with an attention control group. Spouses were recruited from the general community through General Practitioners located in the southern areas of Adelaide, Australia. Quantitative and qualitative data were collected between September 2009 and March 2011; a total of 25 spouses from each of the CDSMS and control groups provided data. Spousal strain was measured by the Caregiver Risk Screen (CRS). Few spouses had CRS scores indicative of moderate or high strain at baseline or upon completion of the study and CRS scores did not differ by programme allocation. Spouses of participants with poorer self-management (r = 0.34, P = 0.016) and more illness intrusiveness (r = 0.35, P = 0.013) had higher CRS scores at baseline (quantitative) and spousal strain was found to increase as a partner's well-being and capacity to self-manage decreased (qualitative). Spouse presence at CDSMS sessions (20%) frequently signalled a reduced level of partner well-being. Overall, our findings suggest that CDSMS programmes in many cases will have little impact (either positive or negative) on spousal strain. A significant increase in spousal strain may occur, however, if there is deterioration in the health status of a CDSMS participant. The impact of decline in participant health status on carer strain needs to be considered in CDSMS programmes.

BACKGROUND:Palliative care is expected to incorporate comprehensive support for family caregivers given that many caregivers suffer psychological morbidity. However, systematically implemented evidence-based psychological support initiatives are lacking. AIM:The objective of this study was to prepare caregivers for the role of supporting a patient with advanced cancer receiving home-based palliative care by offering a one-to-one psycho-educational intervention. We hypothesised that primary family caregivers who participated in the intervention would report decreased psychological distress (primary outcome), fewer unmet needs and increased levels of perceived preparedness, competence and positive emotions. METHODS:A three-arm randomised controlled trial was conducted comparing two versions of the intervention (one face-to-face visit versus two visits) plus standard care to a control group (standard care) across four sites in Australia. RESULTS:A total of 298 participants were recruited; 148 were in the Control condition, 57 in Intervention 1 (one visit) and 93 in Intervention 2 (two visits). Relative to participants in the control group; the psychological well-being of participants in the intervention condition was improved by a small amount but non-significantly. No significant reduction in unmet needs or improvements in positive aspects of caregiving amongst the intervention group were identified. However, the intervention demonstrated significant improvements in participants' levels of preparedness and competence for Intervention 2. CONCLUSION/IMPLICATIONS:This research adds to accumulating body of evidence demonstrating that relatively short psycho-educational interventions can enable family caregivers to feel more prepared and competent in the role of supporting a dying relative. Further investigation is required to determine the longer term outcomes of such interventions.

Despite the known difficulties many people with MS have with high ambient temperatures, there are no reported studies of air conditioning use and MS. This study systematically examined air conditioner use by Australians with MS. A short survey was sent to all participants in the Australian MS Longitudinal Study cohort with a response rate of 76% (n=2,385). Questions included hours of air-conditioner use, areas cooled, type and age of equipment, and the personal effects of overheating. Air conditioners were used by 81.9% of respondents, with an additional 9.6% who could not afford an air conditioner. Regional and seasonal variation in air conditioning use was reported, with a national annual mean of 1,557 hours running time. 90.7% reported negative effects from overheating including increased fatigue, an increase in other MS symptoms, reduced household and social activities, and reduced work capacity. Households that include people with MS spend between 4 and 12 times more on keeping cool than average Australian households.

BACKGROUND:Family caregivers of patients requiring palliative care commonly experience physical, social, and psychological burdens. Although family caregivers are acknowledged as valid service recipients of palliative care, many have unmet needs, and systematic reviews have shown there are limited evidence-based supportive interventions.OBJECTIVES:This study aimed to develop and pilot test a psycho-educational group education program delivered in the inpatient specialist palliative care setting and designed to prepare primary family caregivers for the role of supporting a relative receiving hospital-based palliative care.METHODS:(1) Development of education session and delivery protocol by the research team and expert panel; (2) pilot the intervention in three clinical sites (five sessions in total); (3) evaluate its accessibility and acceptability; and (4) preliminary testing of outcome measures used to access the intervention's effectiveness.RESULTS AND CONCLUSION:The results revealed that the intervention was appropriate and acceptable to caregivers. The intervention needs to be tested in a larger sample to determine the potential benefits for caregivers' sense of preparedness and competence, and testing needs to ascertain if the intervention is accessible.

BACKGROUND:Increasingly, evidence-based health information, in particular evidence from systematic reviews, is being made available to lay audiences, in addition to health professionals. Research efforts have focused on different formats for the lay presentation of health information. However, there is a paucity of data on how patients integrate evidence-based health information with other factors such as their preferences for information and experiences with information-seeking. The aim of this project is to explore how people with multiple sclerosis (MS) integrate health information with their needs, experiences, preferences and values and how these factors can be incorporated into an online resource of evidence-based health information provision for people with MS and their families.METHODS:This project is an Australian-Italian collaboration between researchers, MS societies and people with MS. Using a four-stage mixed methods design, a model will be developed for presenting evidence-based health information on the Internet for people with MS and their families. This evidence-based health information will draw upon systematic reviews of MS interventions from The Cochrane Library. Each stage of the project will build on the last. After conducting focus groups with people with MS and their family members (Stage 1), we will develop a model for summarising and presenting Cochrane MS reviews that is integrated with supporting information to aid understanding and decision making. This will be reviewed and finalised with people with MS, family members, health professionals and MS Society staff (Stage 2), before being uploaded to the Internet and evaluated (Stages 3 and 4).DISCUSSION:This project aims to produce accessible and meaningful evidence-based health information about MS for use in the varied decision making and management situations people encounter in everyday life. It is expected that the findings will be relevant to broader efforts to provide evidence-based health information for patients and the general public. The international collaboration also permits exploration of cultural differences that could inform international practice.