‘All illness is personal to that individual’: a qualitative study of patients’ perspectives on treatment adherence in bronchiectasis

Background: Adherence to treatment is low in bronchiectasis and is associated with poorer health outcomes. Factors affecting adherence decisions have not been explored in patients with bronchiectasis. 

Objective: We aimed to explore patients' perspectives on adherence, factors affecting adherence decision making and to develop a conceptual model explaining this decision-making process in adults with bronchiectasis. 

Methods: Adults with bronchiectasis participated in one-to-one semi-structured interviews. Interviews were audio-recorded, transcribed verbatim and analysed independently by two researchers using thematic analysis. Data from core themes were extracted, categorized into factors affecting adherence decision making and used to develop the conceptual model. 

Results: Participants' beliefs about treatment, the practical aspects of managing treatment, their trust in health-care professionals and acceptance of disease and treatment were important aspects of treatment adherence. The conceptual model demonstrated that adherence decisions were influenced by participants' individual balance of barriers and motivating factors (treatment-related, disease-related, health-care-related, personal and social factors). 

Conclusion: Adherence decision-making in bronchiectasis is complex, but there is the potential to enhance adherence by understanding patients' specific barriers and motivators to adherence and using this to tailor adherence strategies to individual patients and treatments. © 2014 John Wiley & Sons Ltd.

Clinical trial designs for rare diseases: Studies developed and discussed by the International Rare Cancers Initiative

BACKGROUND: The past three decades have seen rapid improvements in the diagnosis and treatment of most cancers and the most important contributor has been research. Progress in rare cancers has been slower, not least because of the challenges of undertaking research.

SETTINGS: The International Rare Cancers Initiative (IRCI) is a partnership which aims to stimulate and facilitate the development of international clinical trials for patients with rare cancers. It is focused on interventional--usually randomized--clinical trials with the clear goal of improving outcomes for patients. The key challenges are organisational and methodological. A multi-disciplinary workshop to review the methods used in ICRI portfolio trials was held in Amsterdam in September 2013. Other as-yet unrealised methods were also discussed.

RESULTS: The IRCI trials are each presented to exemplify possible approaches to designing credible trials in rare cancers. Researchers may consider these for use in future trials and understand the choices made for each design.

INTERPRETATION: Trials can be designed using a wide array of possibilities. There is no 'one size fits all' solution. In order to make progress in the rare diseases, decisions to change practice will have to be based on less direct evidence from clinical trials than in more common diseases.

Reaching out: medical students leading in local communities

Background: Queen's University Red Cross is a medical student-led volunteer group with a key aim of promoting social change within local communities and empowering young people to aspire to higher education. We describe ‘The Personal Development Certificate’, a 12–week community development programme devised by third-year medical students at Queen's University Belfast to target young people who are lacking educational motivation, are disengaged at home or are marginalised through social circumstances.

Context: Community-based education is of increasing importance within undergraduate and postgraduate medical education in the UK, and further afield. We evaluated the perceived improvements in key skills such as teamwork, leadership, communication, and problem solving in students following participation in this programme, and the extent to which their attitude and appreciation of community-based medicine changed.

Innovation: Following facilitation of this community-based initiative, all students reported a perceived improvement in the acquired skill sets. Students made strong links from this programme to previous clinical experiences and appreciated the opportunity to translate a series of classroom-learned skills to real-life environments and interactions. The students’ appreciation and understanding of community-based medicine was the single most improved area of our evaluation.

Implications: We have demonstrated that medical students possess the skills to develop and facilitate their own educational projects. Non-clinical, student-led community projects have the potential to be reproduced using recognised frameworks and guidelines to complement the current undergraduate medical curriculum

Unmasking the ‘Elderly Mystique’: why it is time to make the personal political in ageing research

This article uses feminist scholarship to investigate ‘the elderly mystique’ – which contends that the potential of old age is masked by a set of false beliefs about ageing (i.e. ageism) which permeate social, economic and political life (Cohen, 1988).
The article presents a theoretical model which explores the extent to which institutionalised ageism shapes the trajectory of life after 60. The hypothesis under-pinning the model is simple: The challenge for ageing societies is not the average age of a given population but, rather, how age is used to structure economic, social and political life. An inter-disciplinary framework is used to examine how biological facts about ageing are used to segregate older from younger people, giving older people the status of “other”; economically through retirement, politically through assumptions about ‘the grey vote’ and socially through ageist stereotyping in the media and through denial and ridicule of the sexuality of older people. Each domain is informed by the achievements of feminist theory and research on sexism and how its successes and failures can inform critical investigations of ageism.
The paper recognises the role of ageism in de-politicising the lived experience of ageing. The paper concludes that feminist scholarship, particularly work by feminists in their seventies, eighties and nineties has much to offer in terms of re-framing gerontology as an emancipatory project for current and future cohorts of older people.

Risk in Private Finance Initiative Projects::A Public Sector Perspective

The management of public sector risk is increasingly seen as a priority area of UK government policy. This has been highlighted recently by the Prime Minister Gordon Brown who stated that “the issue of public risk is one of the most challenging areas of policy-making for any government” (Strategic Risk, 2008). In response to these challenges, the UK Prime Minister has appointed a new body - the Risk and Regulation Advisory Council (RRAC) which is tasked with improving the way risk to the public is understood and managed. One area of particular concern with regard to the governance of public sector risks involves projects procured via the Private Finance Initiative (PFI). These projects involve long-term contracts, complex multi-party interactions and thus create various risks to public sector clients. Today, most PFI actors acknowledge the potentially adverse effects of these risks and make an effort to prevent or mitigate undesirable results. As a consequence, issues of risk allocation, risk transfer and risk management have become central to the PFI procurement process. This paper provides an overview of the risk categories and risk types which are relevant to the public sector in PFI projects. It analyses risk as a feature of uncertain future project-related events and examines potential pitfalls which can be associated with PFI risk management on the basis of a case study of a high-profile PFI hospital in Scotland. The paper concludes that, despite the trend towards diminished risk profiles during the operational phase, the public sector continues to be exposed to significant risks when engaging in PFI-based procurement.

Does the UK Local Finance Improvement Trust (Lift) Initiative Improve Risk Management in Public-Private Procurement?

The UK government introduced the Private Finance Initiative (PFI) and, latterly, the Local Improvement Finance Trust (LIFT) in an attempt to improve public service provision. As a variant of PFI, LIFT seeks to create a framework for the effective provision of primary care facilities. Like conventional PFI procurement, LIFT projects involve long-term contracts, complex multi-party interactions and thus create various risks to public sector clients. This paper investigates the advantages and disadvantages of LIFT with a focus on how this approach facilitates or impedes risk management from the public sector client perspective. Our paper concludes that LIFT has a potential for creating additional problems, including the further reduction of public sector control, conflicts of interest, the inappropriate use of enabling funds, and higher than market rental costs affecting the uptake of space in the buildings by local health care providers. However, there is also evidence that LIFT has facilitated new investment and that Primary Care Trusts (PCTs) have themselves started addressing some of the weaknesses of this procurement format through the bundling of projects and other forms of regional co-operation.

Aging in personal and social immunity: do immune traits senesce at the same rate?

How much should an individual invest in immunity as it grows older? Immunity is costly and its value is likely to change across an organism's lifespan. A limited number of studies have focused on how personal immune investment changes with age in insects, but we do not know how social immunity, immune responses that protect kin, changes across lifespan, or how resources are divided between these two arms of the immune response. In this study, both personal and social immune functions are considered in the burying beetle, Nicrophorus vespilloides. We show that personal immune function declines (phenoloxidase levels) or is maintained (defensin expression) across lifespan in nonbreeding beetles but is maintained (phenoloxidase levels) or even upregulated (defensin expression) in breeding individuals. In contrast, social immunity increases in breeding burying beetles up to middle age, before decreasing in old age. Social immunity is not affected by a wounding challenge across lifespan, whereas personal immunity, through PO, is upregulated following wounding to a similar extent across lifespan. Personal immune function may be prioritized in younger individuals in order to ensure survival until reproductive maturity. If not breeding, this may then drop off in later life as state declines. As burying beetles are ephemeral breeders, breeding opportunities in later life may be rare. When allowed to breed, beetles may therefore invest heavily in "staying alive" in order to complete what could potentially be their final reproductive opportunity. As parental care is important for the survival and growth of offspring in this genus, staying alive to provide care behaviors will clearly have fitness payoffs. This study shows that all immune traits do not senesce at the same rate. In fact, the patterns observed depend upon the immune traits measured and the breeding status of the individual.

The COMET initiative database: progress and activities update (2014)

The COMET Initiative database is a repository of studies relevant to the development of core outcome sets (COS). Use of the website continues to increase, with more than 16,500 visits in 2014 (36 % increase over 2013), 12,257 unique visitors (47 % increase), 9780 new visitors (43 % increase) and a rise in the proportion of visits from outside the UK (8565 visits; 51 % of all visits). By December 2014, a total of 6588 searches had been completed, with 2383 in 2014 alone (11 % increase). The growing awareness of the need for COS is reflected in the website and database usage figures.