People with severe asthma are thought to face a sizeable daily disease burden. This study aimed to explore the little-known life experiences of people living with severe asthma.Adults with severe asthma were invited for telephone interview. Semistructured interviews were conducted until no new themes emerged. The 25 interviews were recorded, transcribed and analysed thematically.Four themes emerged. 1) "The body as a hindrance": severe asthma placed broad limits on life from daily chores to career, relationships and family life that left interviewees feeling emotionally distressed. 2) "Burden of treatment": participants mostly accepted the need to take treatment, but were particularly concerned about side-effects of oral corticosteroids. 3) "Alone with asthma": interviewees felt misunderstood and alone in their experience of breathlessness and frightening exacerbations; practical and emotional support needs were often lacking and the emotional distress of severe asthma was amplified in those with little support. 4) "Striving to adapt": patients used both positive strategies (acquiring self-management skills) and less positive strategies (avoidance of physical exertion) in the process of adjustment to living with severe asthma.Severe asthma imposes long-term, debilitating burdens and should be considered differently to milder disease. There is an urgent need to improve practical and emotional support services for patients and their carers.

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Adequate medication adherence is key for optimal benefit of pharmacological treatments. A wealth of research has been conducted to understand and identify opportunities to intervene to improve medication adherence, but variations in adherence definitions within prior research have led to ambiguity in study findings. The lack of a standard taxonomy hinders the development of cumulative science in adherence research. This article reviews the newly established Ascertaining Barriers to Compliance (ABC) taxonomy for medication adherence with a particular focus on its relevance and applicability within the context of asthma and chronic obstructive pulmonary disease management. Building on traditional definitions and concepts within medication adherence, the ABC taxonomy considers the temporal sequence of steps a patient must undertake to be defined as "adherent to treatment": (A) initiation, (B) implementation, and (C) persistence. We explain the clinical and research relevance of differentiating between these phases, point to differences in its applicability in observational and experimental research, review strengths and limitations of available measures, and highlight recent findings on specific determinants of these behaviors. Finally, we provide recommendations for research and practice with a view to supporting and sign posting opportunities to improve future respiratory medication adherence and associated research.

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BackgroundAlthough the prevalence of mental illness among young people with asthma is known to be twice the rate of the wider population, none of the asthma apps reported have acknowledged or attempted to include psychological support features. This is perhaps because user involvement in the development of asthma apps has been scarce. User involvement, facilitated by participatory design methods, can begin to address these issues while contributing insights to our understanding of the psychological experience associated with asthma and how technology might improve quality of life.ObjectiveThe goal of this participatory user research study was to explore the experience, needs, and ideas of young people with asthma while allowing them to define requirements for an asthma app that would be engaging and effective at improving their well-being.MethodsYoung people aged 15-24 years with doctor-diagnosed asthma were invited to participate in a participatory workshop and to complete a workbook designed to elicit their thoughts and ideas about living with asthma, technology use, and the design of an app. Participants generated a number of artifacts (including collages, concept maps, and paper prototypes) designed to reify their ideas, tacit knowledge, and experience.ResultsA total of 20 participants (mean age 17.8 years; 60%, 12/20 female) representing a range from inadequately to well-controlled asthma completed a workbook and 13 of these also took part in a workshop (four workshops were held in total), resulting in 102 participant-generated artifacts. Theoretical thematic analysis resulted in a set of personal needs, feature ideas, and app characteristics considered relevant by young people for an asthma support app. The data revealed that psychological factors such as anxiety, and impediments to autonomy, competence, and relatedness (as consistent with self-determination theory [SDT]), were considered major influences on quality of life by young people with asthma. Furthermore, the incorporation of features pertaining to psychological experience was particularly valued by participants.ConclusionsIn addition to practical features for asthma management, an app for young people with asthma should include support for the mental health factors associated with lived experience (ie, anxiety, lack of autonomy, and social disconnectedness). We show how support for these factors can be translated into design features of an app for asthma. In addition to informing the development of asthma-support technologies for young people, these findings could have implications for technologies designed to support people with chronic illness more generally.

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BackgroundPrimary-care based randomized controlled trials (RCTs) build an important evidence base for general practice but little evidence exists about barriers to recruitment which often hamper such trials.We investigated the issues that impeded and facilitated recruitment to a clinical trial in general practice.MethodsGPs participating in a cluster RCT that tested interventions for improving medication adherence and asthma control completed a survey comprising quantitative and free text questions about their recruitment experiences. We used backward regression to analyze quantitative data and coded free text responses into themes.Results40/55 of enrolled GPs recruited patients, but only one-third reached the planned recruitment target (5 patients/GP). In univariate analyses, poor patient recruitment by GPs was significantly associated with longer time to first patient enrolment, GP-perceived poor access to eligible patients and GP working in a practice training medical students. In regression analysis, only the first was significant (p = 0.001); the explained variance of the model was 48%. Themes from free text responses described recruitment barriers at the level of GP (e.g. GPs excluding patients for whom research appeared too challenging), practice (e.g. practice cultures disempowered GPs), patient (e.g. reluctance to change treatment for research) and study (e.g. protocol requirements complicating recruitment). Facilitators included GPs perceiving good support from the research team.ConclusionTargeted recruitment support early in the recruitment phase may enhance recruitment rates. Over time, interventions to enhance a general practice research culture are also likely to enhance skills to recruit patients, even for complex interventions. We recommend systematic evaluation of recruitment approaches and outcomes in future RCTs to optimize feasibility and success of these important trials.Trial registrationAustralian and New Zealand Clinical Trials Registry ACTRN12610000854033 (date registered 14/10/2010).

This study identified several specific beliefs and behaviours which clinicians could use for initiating patient-centred conversations about medication adherence in asthma.