Preference-based measures to obtain health state utility values for use in economic evaluations with child-based populations: a review and UK-based focus group assessment of patient and parent choices.

BACKGROUND: No current guidance is available in the UK on the choice of preference-based measure (PBM) that should be used in obtaining health-related quality of life from children. The aim of this study is to review the current usage of PBMs for obtaining health state utility values in child and adolescent populations, and to obtain information on patient and parent-proxy respondent preferences in completing PBMs in the UK. METHODS: A literature review was conducted to determine which instrument is most frequently used for child-based economic evaluations and whether child or proxy responses are used. Instruments were compared on dimensions, severity levels, elicitation and valuation methods, availability of value sets and validation studies, and the range of utility values generated. Additionally, a series of focus groups of parents and young people (11-20 years) were convened to determine patient and proxy preferences. RESULTS: Five PBMs suitable for child populations were identified, although only the Health Utilities Index 2 (HUI2) and Child Heath Utility 9D (CHU-9D) have UK value sets. 45 papers used PBMs in this population, but many used non-child-specific PBMs. Most respondents were parent proxies, even in adolescent populations. Reported missing data ranged from 0.5 to 49.3%. The focus groups reported their experiences with the EQ-5D-Y and CHU-9D. Both the young persons' group and parent/proxy groups felt that the CHU-9D was more comprehensive but may be harder for a proxy to complete. Some younger children had difficulty understanding the CHU-9D questions, but the young persons' group nonetheless preferred responding directly. CONCLUSION: The use of PBMs in child populations is increasing, but many studies use PBMs that do not have appropriate value sets. Parent proxies are the most common respondents, but the focus group responses suggest it would be preferred, and may be more informative, for older children to self-report or for child-parent dyads to respond.

Prescribing antibiotics to 'at-risk' children with influenza-like illness in primary care: qualitative study.

OBJECTIVES: National Institute for Health and Care Excellence guidelines recommend immediate antibiotic treatment of respiratory tract infections in 'at-risk' individuals with comorbidities. Observational evidence suggests that influenza particularly predisposes children to bacterial complications. This study investigates general practitioners' (GPs') accounts of factors influencing their decision-making about antibiotic prescribing in the management of at-risk children with influenza-like illness (ILI). DESIGN: Qualitative interview study using a maximum variation sample with thematic analysis through constant comparison. SETTING: Semistructured telephone interviews with UK GPs using a case vignette of a child with comorbidities presenting with ILI. PARTICIPANTS: There were 41 GPs (41.5% men; 40 from England, 1 from Northern Ireland) with a range of characteristics including length of time in practice, paediatrics experience, practice setting and deprivation. RESULTS: There was considerable uncertainty and variation in the way GPs responded to the case and difference of opinion about how long-term comorbidities should affect their antibiotic prescribing pattern. Factors influencing their decision included the child's case history and clinical examination; the GP's view of the parent's ability to self-manage; the GP's own confidence and experiences of managing sick children and assessment of individual versus abstract risk. GPs rarely mentioned potential influenza infection or asked about immunisation status. All said that they would want to see the child; views about delayed prescribing varied in relation to local health service provision including options for follow-up and paediatric services. CONCLUSIONS: The study demonstrates diagnostic uncertainty and wide variation in GP decision-making about prescribing antibiotics to children with comorbidity. Future guidelines might encourage consideration of a specific diagnosis such as influenza, and risk assessment tools could be developed to allow clinicians to quantify the levels of risk associated with different types of comorbidity. However, the wide range of clinical and non-clinical factors involved in decision-making during these consultations should also be considered in future guidelines.

'Rule your condition, don't let it rule you': young adults' sense of mastery in their accounts of growing up with a chronic illness.

Poor control of chronic illness is often attributed to patients' non-adherence to medical advice and treatment. Policy and practice has traditionally focused on improving adherence, assuming that the more patients comply, the better their control and outcomes will be. Drawing on complexity theory, we question this logic in a secondary analysis of qualitative data from studies of young adults' experiences of growing up with a chronic illness. Examining their sense of mastery of their condition, we found they valued both being in medical control of their condition and having autonomy but had different ideas about how to achieve these goals. While some young adults mostly shared the traditional medical view that achieving good control was the key to retaining their autonomy, others saw control and autonomy as independent, non-linear and potentially conflicting goals. The latter endeavoured to achieve both goals by striking a balance, variously adopting strategies of engagement with and resistance to their regime in the changing social contexts of their lives. We suggest that policy and practice needs to do more to promote autonomy and adaptive capacity, rather than simply maximising adherence and control, recognising the mundane complexity of living with and managing a chronic illness.

Prevalence of eating disorders in males: a review of rates reported in academic research and UK mass media.

Media presentations of health issues affect evaluations of personal susceptibility to particular illnesses and hence help-seeking behaviours. We examined data on prevalence of eating disorders (EDs - which are often characterised as 'female') among males in: scientific literature; readily-accessible web-based information; and UK newspaper articles (published 7/12/2002-7/12/2012). This revealed conflicting statistics. Academic papers suggest men comprise around 25% of community-based samples, but much lower proportions (10% or less) of clinic samples. Websites and newspapers present widely differing statistics both on prevalence overall (numbers with EDs in the UK ranged from 60,000 to 2.7 million), and in men (generally suggesting they constituted 10-25% of those with EDs), rarely distinguishing between diagnosed and non-diagnosed samples. By 2011, newspapers were more consistent on overall numbers with EDs in the UK (1.6 million) and the proportion who were men (20%), drawing on one website as the authoritative source. Conflicting statistics may confuse men searching for ED (or other) health-related information, lead to underestimations of male susceptibility to EDs and/or reinforce inappropriate stereotypes of EDs as confined to adolescent girls.

"It's not healthy and it's decidedly not masculine": a media analysis of UK newspaper representations of eating disorders in males.

OBJECTIVES: Recent qualitative research found young men reporting that an expectation that eating disorders (EDs) mainly affect young women led them, and others, to only recognise their symptoms when their ED had become entrenched. This raises questions about how these stereotypes persist. We therefore explored how EDs in males were represented in articles published in UK newspapers over a 10-year period (7.12.2002-7.12.2012), specifically attending to whether newsprint media represent EDs in males as 'gender appropriate', 'gender anomalous' or 'gender neutral'. DESIGN: A qualitative thematic analysis of UK newspaper articles. METHODS: We searched two databases, Newsbank and LexisNexis, for newspaper articles including ED and male terms in the lead/first paragraph. Following de-duplication, 420 articles were scrutinised; 138 met inclusion criteria for detailed textual analysis and were imported into NVivo10. FINDINGS: The number of articles peaked in 2008 when a UK politician announced that he had experienced bulimia nervosa. Analysis of how the articles portrayed male ED-related characterisations and experiences revealed that they conveyed ambiguous messages about EDs in males. Despite apparently aiming to dispel stereotypes that only young women experience EDs and to address stigma surrounding EDs in males, many aspects of the articles, including repetition of phrases such as 'a young woman's illness', serve to reinforce messages that EDs are inherently 'female' and so 'anomalous' for men. CONCLUSIONS: Newspaper articles represent men with EDs as atypical of men, as a result of having an ED (and any feminising or demasculinising characteristics associated with this), and as atypical of people with EDs, who are still usually portrayed as teenage girls. Such media representations frame a cultural paradigm in which there is an expectation that men may feel shame about or strive to conceal EDs, potentially contributing to men with EDs delaying help-seeking, gaining late access to treatments and reducing chances of successful outcomes.

The role of gendered constructions of eating disorders in delayed help-seeking in men: a qualitative interview study.

OBJECTIVES: To understand how young men recognise eating disorder (ED) symptoms and decide to seek help, and to examine their experiences of initial contacts with primary care. DESIGN: A qualitative interview study. SETTING: Men from across the UK were interviewed as part of a study of 39 young men's and women's experiences of having an ED. PARTICIPANTS: 10 men aged 16-25 years with various EDs including anorexia nervosa and bulimia nervosa. RESULTS: The widespread perception of EDs as uniquely or predominantly a female problem led to an initial failure by young men to recognise their behaviours as symptoms of an ED. Many presented late in their illness trajectory when ED behaviours and symptoms were entrenched, and some felt that opportunities to recognise their illness had been missed because of others' lack of awareness of EDs in men. In addition, the men discussed the lack of gender-appropriate information and resources for men with EDs as an additional impediment to making sense of their experiences, and some felt that health and other professionals had been slow to recognise their symptoms because they were men. CONCLUSIONS: Although increasingly common in young men, widespread cultural constructions of EDs as a 'women's illness' mean that men may fail to recognise ED symptoms until disordered behaviours become entrenched and less tractable to intervention. Men also report that such perceptions can affect the reactions of their families and friends, as well as health and educational professionals. Primary care professionals are well placed to challenge inappropriate perceptions of EDs.

"The brain is such a delicate thing": an exploration of fear and seizures among young people with epilepsy.

UNLABELLED: Epilepsy is a condition where pathology, diverse manifestations and attached social understandings contribute to an emotional experience unlike many other chronic conditions. The emotional dimension to epilepsy has been little considered in existing research. OBJECTIVES: To explore the emotional experience of young people with epilepsy. METHODS: A qualitative study involving in-depth interviews with 37 young people diagnosed with epilepsy. RESULTS: Fear emerged as the key emotion and this largely related to the experience, or anticipated experience, of seizure activity. Three key features of fear and epilepsy emerged through the analysis; harm, temporality and action. The fear experienced was not only external, relating to immediate injury, but also internal in terms of potential damage to the brain. The embodied nature of epilepsy can, therefore, present a threat to conceptions of the self. Underlying this internal dimension of fear is an understanding of the brain as central to the sense of self. CONCLUSIONS: The experience of epilepsy does not only involve fear of physical harm but also fear of a loss of self. We conclude that there are broader (alternative) readings of the experience of epilepsy that are often overlooked.

Theoretical and practical issues in the definition of health: insights from Aboriginal Australia.

This paper discusses attempts to define health within a public policy arena and practical and conceptual difficulties that arise. An Australian Aboriginal definition of health is examined. Although there are certain difficulties of translation, this definition is prominent in current Australian health policy and discourse about health. The definition can be seen as broadly holistic in comparison to other holistic definitions such as that of the World Health Organization. The nature of this holism and its grounding within the context of Aboriginal Australia is discussed. In particular, its implications for the phenomenon of medicalization, which may be associated with a holistic notion of health, is critically explored, as is the link of notions of health to culture and the question of the possibility of a universal definition of health. The question of to what extent a definition of health is inspirational or operational is also raised.

"It's like you are just a spectator in this thing": Experiencing social life the 'aspie' way.

This study explores the experiences of people with Asperger syndrome (AS) from a sociological perspective using the theoretical approaches of ethnomethodology and symbolic interactionism. In-depth interviews were conducted with 16 people with AS and three key themes of feeling different, trying to fit in and safe spaces are considered here. We suggest that people with AS develop a different symbolic capacity to most people and have difficulties in making sense of social encounters. While these difficulties can be overcome, to some degree, by developing strategies to try to fit in, this learning remains at a superficial level and is not internalised through the process of socialisation. Without being able to derive a firm sense of reality from spontaneous involvement in social encounters, participants feel "unruled, unreal and anomic" (Goffman, 1967: 135) and experience intense autistic emotion (Davidson, 2007a,b).

The causation of disease - the practical and ethical consequences of competing explanations.

The prevention, treatment and management of disease are closely linked to how the causes of a particular disease are explained. For multi-factorial conditions, the causal explanations are inevitably complex and competing models may exist to explain the same condition. Selecting one particular causal explanation over another will carry practical and ethical consequences that are acutely relevant for health policy. In this paper our focus is two-fold; (i) the different models of causal explanation that are put forward within current scientific literature for the high and rising prevalence of the common complex conditions of coronary artery disease (CAD) and type 2 diabetes mellitus (T2D); and (ii) how these explanations are taken up (or not) within national health policy guidelines. We examine the causal explanations for these two conditions through a systematic database search of current scientific literature. By identifying different causal explanations we propose a three-tier taxonomy of the most prominent models of explanations: (i) evolutionary, (ii) lifecourse, and (iii) lifestyle and environment. We elaborate this taxonomy with a micro-level thematic analysis to illustrate how some explanations are semantically and rhetorically foregrounded over others. We then investigate the uptake of the scientific causal explanations in health policy documents with regard to the prevention and management recommendations of current National Service Frameworks for CAD and T2D. Our findings indicate a lack of congruence between the complexity and frequent overlap of causal explanations evident in the scientific literature and the predominant focus on lifestyle recommendations found in the mainstream health policy documents.