Title: Understanding pre-diabetes from the patient’s perspective: A mixed-methods study aimed at improving the success of diabetes prevention programmes.
Funder: Department of Health and Social Care

Abstract: Background In people with pre-diabetes, lifestyle programmes can reduce risk of progression to type 2 diabetes in those able and willing to engage in interventions. The evidence base on how people are informed of their pre-diabetes diagnosis and how they react to such information (especially behaviourally) is sparse and theoretically superficial. Socio-cultural and material barriers to lifestyle change may mean that even those willing to change behaviour are unable to.Aims To inform prevention programmes for type 2 diabetes with a richer understanding of how the diagnosis of pre-diabetes affects people's feelings, attitudes and behaviour in different socio-cultural contexts.Objectives Explore clinicians' experiences of conveying the pre-diabetes diagnosis to patients. Explore the meaning of pre-diabetes to people who have been given such a diagnosis, including the impact on their lives and lifestyles. Identify policymakers' priorities for local diabetes prevention programmes, including their evidence needs. Hold preliminary inter-sectoral workshops with a view to refining current diabetes prevention programmes. Research questions How (and in what context) is the diagnosis of pre-diabetes communicated to patients in General Practice? How does this differ in individuals from different cultural groups, those with limited English and those with low health literacy? How do people from different backgrounds internalise and respond to the pre-diabetes categorisation? How do socio-cultural and structural influences affect this response and subsequent action or inaction relating to health behaviours? What opportunities and constraints do local commissioners and policymakers foresee in implementing socio-culturally tailored diabetes prevention policies? How can we align evidence, policymakers and public participation to co-design effective diabetes prevention programmes? Plan of investigation Work Package 1 Focus groups with clinicians who convey the diagnosis of pre-diabetes. Questions will be directed at understanding their perspectives on the pre-diabetes diagnosis, how they make and interpret such a diagnosis and how they communicate results. Emphasis will be placed on discussing critical cases in which practitioners felt the patient had not understood or did not intend to act on the information. Work Package 2 A variety sample of 30 people will be recruited via local GPs from 2-3 different localities whose population is at high risk of developing diabetes. For each individual, a rich case study will be prepared using three different qualitative methods (and using interpreters or bilingual health advocates as required). Narrative interview (the story of how they came to be diagnosed, what they felt about it and what they have done about it) (9); Cultural probes' such as camera, scrapbook (to record likes/dislikes, concerns, wishes, maps of relationships or places), diary (to record specific events and reactions to these), postcards or sticky notes (for things that occur spontaneously) (10). Go-along interviews' to explore how people interact with their local environment (e.g. green spaces, leisure facilities, shops, cafs etc) (11).Work Package 3 Interviews will be undertaken with commissioners and local policy makers with two objectives: [a] building relationships and creating an appetite for the findings of work package 1 and 2; and [b] gaining an understanding of policymakers' evidence needs and the constraints they are working under.Work Package 4 Two facilitated co-design workshops bringing together stakeholders to discuss the ethnographic case studies from work package 2 along with other local data (visual maps, public health reports, photographs of local features). Potential benefits to patients and the NHSFor people with pre-diabetes: Clinical and policy responses better adapted to their needs. For clinicians: Richer understanding of the lived experience of pre-diabetes and how this diagnosis might best be communicated to patients. For policymakers: Understanding social, cultural and material constraints that affect people's ability and willingness to engage in preventive interventions.

Lay abstract: Background Because of significant health impact and economic costs, preventing type 2 diabetes is a major national priority (1). The NHS Diabetes Prevention Programme was introduced in April 2016 (2) based on evidence that lifestyle programmes can reduce an individual's risk of developing diabetes (3). Diabetes rates are highest in deprived and minority ethnic groups; for example, South Asians are four times more likely to develop diabetes than those from white backgrounds (4). Interventions have not been very successful in reducing diabetes incidence in these groups (5, 6) partly but not wholly because of low uptake of prevention programmes. The reasons behind this lack of success are poorly understood.Few published studies have considered how pre-diabetes diagnosis is communicated to people, how people react to the diagnosis, or how their efforts to implement lifestyle change is influenced by socio-cultural context (7,8). Yet understanding this context and how people make choices about their lifestyles is surely key to the success of diabetes prevention policies.Aim: To inform prevention programmes for type 2 diabetes with a richer understanding of how the diagnosis of pre-diabetes affects people's feelings, attitudes and behaviour in different socio-cultural contexts.Research Questions How is the diagnosis of pre-diabetes communicated to patients in General Practice? How do people from different socio-economic and ethnic backgrounds react to the pre-diabetes diagnosis (that is, what are their feelings and attitudes) and how do they respond to it (e.g. with efforts to change their lifestyle)? How do local policymakers use evidence to make their decisions? What opportunities and constraints do they foresee in implementing socio-culturally tailored diabetes prevention policies? How can we align evidence, policymakers and public participation to co-design effective diabetes prevention programmes? Design and Methods Work Package 1: Focus groups of Healthcare Professionals Undertake three focus groups, in different localities, with clinicians (doctors, nurses, others) who inform people of their pre-diabetes diagnosis. Explore cases where the practitioner felt the patient didn't understand the diagnosis or felt that they would not follow the advice given.Work Package 2: Qualitative research in 30 people with pre-diabetes from identified high risk areas. Three qualitative methods: narrative interviews (in which participants tell stories); cultural probes' (in which participants use cameras, scrapbooks and other tools to build a picture of what is important in their lives); go along' interviews (in which the participant takes the researcher on a journey around their local area). These methods will provide insights into how pre-diabetes' affects identity and the mundane aspects of daily life, and how peer relationships and material environments affect lifestyle choices. Work Package 3: Interviews with policymakers Interviews with commissioners and local policymakers to ascertain how they use evidence alongside nationally set priorities and economic constraints to make diabetes prevention policy decisions. These interviews will lay groundwork (building relationships) for dissemination of findings.Work Package 4: Groundwork for co-design of local interventions Findings from Work Packages 1, 2 and 3 will be discussed at workshops with a range of people involved in diabetes prevention. A co-design group including citizens, local clinicians, policymakers and others (e.g. schools) will be facilitated to produce an infographic that draws together the multiple interacting influences (at individual, locality and national level) on diabetes prevention, and draw out implications for local programme design/adaptation. These workshops will inform a postdoctoral application for funding for taking forward the co-design work.Public Participation and Involvement The study steering group will have a lay chair and two lay members from different social and ethnic groups. PPI input will be sought for production of lay summaries and other written and visual outputs. The dissemination phase (work package 4) will be run with a wide range of patient, lay and community groups as equal partners.Outputs and dissemination This project will produce different outputs for different audiences:For people with diagnosis of pre-diabetes: A lay summary of the ways in which this diagnosis and associated lifestyle change may affect them. For clinicians: A richer understanding of the lived experience of pre-diabetes and how this diagnosis might best be communicated to patients. For academics: research papers and conference presentations. For local policymakers: Strong local collaborations and increased mutual trust among key stakeholders who will be ready to move forward with a co-design phase for refining local diabetes prevention policy. For national policymakers: A policy brief detailing how this research has influenced the policy process and intervention adaptation. For the candidate: A DPhil thesis according to Oxford standards and regulations.

Research activity codes: 3.1 PRIMARY PREVENTION INTERVENTIONS TO MODIFY BEHAVIOURS OR PROMOTE WELL-BEING;7.3 MANAGEMENT AND DECISION MAKING;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: METABOLIC AND ENDOCRINE