Over the past 25 years, there has been significant acknowledgement of the importance of assessing the impact of diabetes on quality of life. Yet, despite the development of several diabetes‐specific quality of life measures, the challenges we faced in 1995 remain. There is little consensus on the definition of quality of life because of the complexity and subjectivity of the concept. General quality of life comprises several domains of life, and these are highly individualized. Assessing the impact of diabetes on these life domains adds to the complexity. While comprehensive diabetes‐specific quality‐of‐life measures typically increase respondent burden, brief questionnaires may not capture all relevant/important domains. Today, the lack of resolution of these challenges may explain why the impact of diabetes on quality of life is not systematically assessed in research or clinical care. Few researchers report detailed rationales for assessment, there is often a mismatch between the concept of interest and the measure selected, and data are misinterpreted as assessing the impact of diabetes on quality of life when, in reality, related but distinct constructs have been assessed, such as diabetes distress, treatment satisfaction or health status. While significant efforts are being made to increase routine monitoring of psychological well‐being and understand the lived experience, no guidelines currently recommend routine clinical assessment of diabetes‐specific quality of life, and there is no consensus on which questionnaire(s) to use. The gaps identified in this review need urgent attention, starting with recognition that assessment of diabetes‐specific quality of life is as important as biomedical markers, if we are to improve the lives of people with diabetes.

BackgroundSuccessful management of diabetes requires attention to the behavioural, psychological and social aspects of this progressive condition. The Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Study is an international collaborative. Diabetes MILES--Australia, the first Diabetes MILES initiative to be undertaken, was a national survey of adults living with type 1 or type 2 diabetes in Australia. The aim of this study was to gather data that will provide insights into how Australians manage their diabetes, the support they receive and the impact of diabetes on their lives, as well as to use the data to validate new diabetes outcome measures.Methods/designThe survey was designed to include a core set of self-report measures, as well as modules specific to diabetes type or management regimens. Other measures or items were included in only half of the surveys. Cognitive debriefing interviews with 20 participants ensured the survey content was relevant and easily understood. In July 2011, the survey was posted to 15,000 adults (aged 18-70 years) with type 1 or type 2 diabetes selected randomly from the National Diabetes Services Scheme (NDSS) database. An online version of the survey was advertised nationally. A total of 3,338 eligible Australians took part; most (70.4%) completed the postal survey. Respondents of both diabetes types and genders, and of all ages, were adequately represented in both the postal and online survey sub-samples. More people with type 2 diabetes than type 1 diabetes took part in Diabetes MILES--Australia (58.8% versus 41.2%). Most respondents spoke English as their main language, were married/in a de facto relationship, had at least a high school education, were occupied in paid work, had an annual household income > $AUS40,000, and lived in metropolitan areas.DiscussionA potential limitation of the study is the under-representation of respondents from culturally and linguistically diverse backgrounds (including Aboriginal and Torres Strait Islander origin). Diabetes MILES--Australia represents a major achievement in the study of diabetes in Australia, where for the first time, the focus is on psychosocial and behavioural aspects of this condition at a national level.

ObjeCtiveTo compare the effectiveness of a novel model of care ("Stepping Up") with usual primary care in normalising insulin initiation for type 2 diabetes, leading to improved glycated haemoglobin (HbA1c) levels. DesignCluster randomised controlled trial.setting Primary care practices in Victoria, Australia, with a practice nurse and at least one consenting eligible patient (HbA1c ≥7.5% with maximal oral treatment).PartiCiPants 266 patients with type 2 diabetes and 74 practices (mean cluster size 4 (range 1-8) patients), followed up for 12 months.interventiOn The Stepping Up model of care intervention involved theory based change in practice systems and reorientation of the roles of health professionals in the primary care diabetes team. The core components were an enhanced role for the practice nurse in leading insulin initiation and mentoring by a registered nurse with diabetes educator credentials. Main OutCOMe MeasuresThe primary endpoint was change in HbA1c. Secondary endpoints included the proportion of participants who transitioned to insulin, proportion who achieved target HbA1c, and a change in depressive symptoms (patient health questionnaire, PHQ-9), diabetes specific distress (problem areas in diabetes scale, PAID), and generic health status (assessment of quality of life instrument, AQoL-8D).results HbA1c improved in both arms, with a clinically significant between arm difference (mean difference −0.6%, 95% confidence interval −0.9% to −0.3%), favouring the intervention. At 12 months, in intervention practices, 105/151 (70%) of participants had started insulin, compared with 25/115 (22%) in control practices (odds ratio 8.3, 95% confidence interval 4.5 to 15.4, P<0.001). Target HbA1c (≤7% (53 mmol/mol)) was achieved by 54 (36%) intervention participants and 22 (19%) control participants (odds ratio 2.2, 1.2 to 4.3, P=0

Aims Optimal diabetes management requires daily selfmanagement. While little time is spent with health professionals, they can have a substantial impact on how a person manages and feels about living with diabetes. The aim of this qualitative study was to explore what people with diabetes wish their health professionals understood about living with diabetes.Methods Thematic analysis was conducted of responses to a single open-ended question, 'What do you wish your health professional understood about living with diabetes?', which was part of the Diabetes MILES-2 survey, assessing the psychological and behavioural aspects of living with type 1 or type 2 diabetes in Australian adults.Results In total, 1316 responses (56% response rate) were collected, with 1190 responses included for analysis (54% from respondents with type 1 diabetes, 46% from those with type 2 diabetes). Seven major themes emerged; respondents wished their health professional understood: 1) the potential barriers to diabetes management; 2) that it is 'easier said than done'; 3) the social/emotional impact; 4) that they want, need and deserve more; 5) that judgements, assumptions and negative perspective are not helpful; 6) more about diabetes; and 7) that the respondent is the expert in his/her diabetes. Other comments suggested satisfactory experiences with health professionals, highlighting that some respondents had no wish for their health professional to understand more.Conclusions This study highlights that, although some adults with diabetes are satisfied with their health professionals' understanding of living with diabetes, many report unmet needs and perceive a lack of person-centred care from their health professionals. Diabet. Med. 37, 971-981 (2020)