ObjectivesThere is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes.DesignSemistructured qualitative interviews analysed using content analysis.SettingHospital-based outpatient clinics and primary healthcare clinics in Sweden.Participants29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). Inclusion criteria: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics.ResultsTo live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme ‘To live a good life with diabetes’ constituting the two main categories ‘How I feel and how things are going with my diabetes’ and ‘Support from diabetes care in managing diabetes’ including five different categories.ConclusionsCommon aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

PurposeThe Swedish National Diabetes Register (NDR) has developed a diabetes-specific questionnaire to collect information on individuals' management of their diabetes, collaboration with healthcare providers and the disease’s impact on daily life. Our main objective was to develop measures of well-being, abilities to manage diabetes and judgements of diabetes care, and to detect and quantify differences using the NDR questionnaire.Design, setting and participantsThe questionnaire was analysed with using responses from 3689 participants with type 1 and 2 diabetes, randomly sampled from the NDR population, combined with register data on patient characteristics and cardiovascular and diabetes complication risk factors.MethodsWe used item response theory to develop scales for measuring well-being, abilities to manage diabetes and judgements of diabetes care (scores). Test–retest reliability on the scale level was analysed with intraclass correlation. Associations between scores and risk factor levels were investigated with subgroup analyses and correlations.ResultsWe obtained scales with satisfactory measurement properties, covering patient reported outcome measures such as general well-being and being free of worries, and patient reported experience measure, for example, access and continuity in diabetes care. All scales had acceptable test–retest reliability and could detect differences between diabetes types, age, gender and treatment subgroups. In several aspects, for example, freedom of worries, type 1 patients report lower than type 2, and younger patients lower than older. Associations were found between some scores and glycated haemoglobin, but none with systolic blood pressure or low-density lipoprotein cholesterol. Clinicians report positive experience of using scores, visually presented, in the patient dialogue.ConclusionsThe questionnaire measures and detects differences in patient well-being, abilities and judgements of diabetes care, and identifies areas for improvement. To further improve diabetes care, we conclude that patient-reported measures are important supplements to cardiovascular and diabetes complication risk factors, reflecting patient experiences of living with diabetes and diabetes care.

Background Health-related quality of life and glycaemic control are some of the central outcomes in clinical diabetes care and research. The purpose of this study was to describe the health-related quality of life and assess its association with glycaemic control in adults with type 1 and type 2 diabetes in a nationwide setting. Methods In this cross-sectional survey, people with type 1 ( n = 2479) and type 2 diabetes ( n = 2469) were selected at random without replacement from the Swedish National Diabetes Register. Eligibility criteria were being aged 18–80 years with at least one registered test of glycated haemoglobin (HbA 1c ) the last 12 months. The generic 36-item Short Form version 2 (SF-36v2) was answered by 1373 (55.4%) people with type 1 diabetes and 1353 (54.8%) with type 2 diabetes. Results Correlation analyses showed weak correlations between scores on the SF-36v2 and glycaemic control for both diabetes types. After the participants were divided into three groups based on their levels of HbA 1c , multivariate regression analyses adjusted for demographics, other risk factors and diabetes complications showed that among participants with type 1 diabetes, the high-risk group (≥70 mmol/mol/8.6%) had statistically significantly lower means in five out of eight domains of the SF-36v2 and the mental component summary measure, as compared with the well-controlled group (< 52 mmol/mol/6.9%). Among the participants with type 2 diabetes, the high-risk group had the lowest statistically significantly means in seven domains and both summary measures. Conclusions Among people with type 1 and type 2 diabetes, adults with high-risk HbA 1c levels have lower levels of health-related quality of life in most but not all domains of the SF-36v2. This finding was not explained by demographics, other risk factors, or diabetes complications. The weak individual-level correlations between HRQOL scores and levels of glycaemic control argues for the need to not focus exclusively on either HbA 1c levels or HRQOL scores but rather on both because both are important parts of a complex, life-long, challenging condition. Electronic supplementary material The online version of this article (10.1186/s12955-019-1212-z) contains supplementary material, which is available to authorized users.