Jane Speight

Not all roads lead to Rome-a review of quality of life measurement in adults with diabetes.

Aims  Quality of life (QoL) is recognized widely as an important health outcome in diabetes, where the burden of self‐management places great demands on the individual. However, the concept of QoL remains ambiguous and poorly defined. The aim of our review is to clarify the measurement of QoL in terms of conceptualization, terminology and psychometric properties, to review the instruments that have been used most frequently to assess QoL in diabetes research and make recommendations for how to select measures appropriately.

Long-term biomedical and psychosocial outcomes following DAFNE (Dose Adjustment For Normal Eating) structured education to promote intensive insulin therapy in adults with sub-optimally controlled Type 1 diabetes

AIMS To explore long-term outcomes of participation in a Dose Adjustment For Normal Eating (DAFNE) training course, which provided one-off exposure to structured education in intensive insulin therapy to people with established Type 1 diabetes. METHODS A cohort design follow-up of original trial participants at a mean of 44 months (range: 37-51 months) in hospital diabetes clinics in three English health districts. 104 (74%) original participants provided biomedical data; 88 (63%) completed questionnaires including the ADDQoL, measuring impact of diabetes on quality of life (QoL). RESULTS At 44 months, mean improvement in HbA(1c) from baseline was 0.36% (9.32+/-1.1% to 8.96+/-1.2%, p<0.01) remaining significant but deteriorated from 12 months (p<0.05). Improvements in QoL seen at 12 months were sustained at 44 (e.g. impact of diabetes on dietary freedom: -1.78+/-2.33 at 44 months versus -4.27+/-2.94, baseline, p<0.0001; versus 1.80+/-2.32 at 12 months, ns). Similar results were obtained using last observation carried forward for patients not supplying follow-up data. CONCLUSIONS The impact of a single DAFNE course on glycaemic control remains apparent in the long term, although further interventions will be required to achieve recommended HbA(1c). In contrast, improvements in QoL and other patient-reported outcomes are well maintained over approximately 4 years.

FDA guidance on patient reported outcomes.

A prompt for the industry to raise scientific standards

Social Stigma in Diabetes

A comprehensive understanding of the social and psychological impact of diabetes mellitus is important for informing policy and practice. One potentially significant, yet under-researched, issue is the social stigma surrounding diabetes. This narrative review draws on literature about health-related stigma in diabetes and other chronic conditions in order to develop a framework for understanding diabetes-related stigma. Our review of the literature found that people who do not have diabetes assume that diabetes is not a stigmatized condition. In contrast, people with diabetes report that stigma is a significant concern to them, experienced across many life domains, e.g., in the workplace, in relationships. The experience of diabetes-related stigma has a significant negative impact on many aspects of psychological well-being and may also result in sub-optimal clinical outcomes for people with diabetes. We propose a framework that highlights the causes (attitudes of blame, feelings of fear and disgust, and the felt need to enforce social norms and avoid disease), experiences (being judged, rejected, and discriminated against), and consequences (e.g., distress, poorer psychological well-being, and sub-optimal self-care) of diabetes-related stigma and also identifies potential mitigating strategies to reduce diabetes-related stigma and/or enhance coping and resilience amongst people with diabetes. The systematic investigation of the experiences, causes, and consequences of diabetes-related stigma is an urgent research priority.

The impact of hypoglycaemia on quality of life and related patient-reported outcomes in Type 2 diabetes: a narrative review.

Diabet. Med. 29, 293–302 (2012)

The ADKnowl: identifying knowledge deficits in diabetes care

Aims  To present the ADKnowl measure of diabetes‐related knowledge and evaluate its use in identifying the nature and extent of patient and health professional knowledge deficits.

‘I call it the blame and shame disease’: a qualitative study about perceptions of social stigma surrounding type 2 diabetes

Objectives While health-related stigma has been the subject of considerable research in other conditions (obesity and HIV/AIDS), it has not received substantial attention in diabetes. The aim of the current study was to explore the social experiences of Australian adults living with type 2 diabetes mellitus (T2DM), with a particular focus on the perception and experience of diabetes-related stigma. Design A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis. Setting This study was conducted in non-clinical settings in metropolitan and regional areas in the Australian state of Victoria. Participants were recruited primarily through the state consumer organisation representing people with diabetes. Participants All adults aged ≥18 years with T2DM living in Victoria were eligible to take part. Twenty-five adults with T2DM participated (12 women; median age 61 years; median diabetes duration 5 years). Results A total of 21 (84%) participants indicated that they believed T2DM was stigmatised, or reported evidence of stigmatisation. Specific themes about the experience of stigma were feeling blamed by others for causing their own condition, being subject to negative stereotyping, being discriminated against or having restricted opportunities in life. Other themes focused on sources of stigma, which included the media, healthcare professionals, friends, family and colleagues. Themes relating to the consequences of this stigma were also evident, including participants’ unwillingness to disclose their condition to others and psychological distress. Participants believed that people with type 1 diabetes do not experience similar stigmatisation. Conclusions Our study found evidence of people with T2DM experiencing and perceiving diabetes-related social stigma. Further research is needed to explore ways to measure and minimise diabetes-related stigma at the individual and societal levels, and also to explore perceptions and experiences of stigma in people with type 1 diabetes.

Recovery of Hypoglycemia Awareness in Long-Standing Type 1 Diabetes: A Multicenter 2 × 2 Factorial Randomized Controlled Trial Comparing Insulin Pump With Multiple Daily Injections and Continuous With Conventional Glucose Self-Monitoring (HypoCOMPaSS)

OBJECTIVE To determine whether impaired awareness of hypoglycemia (IAH) can be improved and severe hypoglycemia (SH) prevented in type 1 diabetes, we compared an insulin pump (continuous subcutaneous insulin infusion [CSII]) with multiple daily injections (MDIs) and adjuvant real-time continuous glucose monitoring (RT) with conventional self-monitoring of blood glucose (SMBG). RESEARCH DESIGN AND METHODS A 24-week 2 × 2 factorial randomized controlled trial in adults with type 1 diabetes and IAH was conducted. All received comparable education, support, and congruent therapeutic targets aimed at rigorous avoidance of biochemical hypoglycemia without relaxing overall control. Primary end point was between-intervention difference in 24-week hypoglycemia awareness (Gold score). RESULTS A total of 96 participants (mean diabetes duration 29 years) were randomized. Overall, biochemical hypoglycemia (≤3.0 mmol/L) decreased (53 ± 63 to 24 ± 56 min/24 h; P = 0.004 [t test]) without deterioration in HbA1c. Hypoglycemia awareness improved (5.1 ± 1.1 to 4.1 ± 1.6; P = 0.0001 [t test]) with decreased SH (8.9 ± 13.4 to 0.8 ± 1.8 episodes/patient-year; P = 0.0001 [t test]). At 24 weeks, there was no significant difference in awareness comparing CSII with MDI (4.1 ± 1.6 vs. 4.2 ± 1.7; difference 0.1; 95% CI −0.6 to 0.8) and RT with SMBG (4.3 ± 1.6 vs. 4.0 ± 1.7; difference −0.3; 95% CI −1.0 to 0.4). Between-group analyses demonstrated comparable reductions in SH, fear of hypoglycemia, and insulin doses with equivalent HbA1c. Treatment satisfaction was higher with CSII than MDI (32 ± 3 vs. 29 ± 6; P = 0.0003 [t test]), but comparable with SMBG and RT (30 ± 5 vs. 30 ± 5; P = 0.79 [t test]). CONCLUSIONS Hypoglycemia awareness can be improved and recurrent SH prevented in long-standing type 1 diabetes without relaxing HbA1c. Similar biomedical outcomes can be attained with conventional MDI and SMBG regimens compared with CSII/RT, although satisfaction was higher with CSII.

Structured Type 1 Diabetes Education Delivered Within Routine Care Impact on glycemic control and diabetes-specific quality of life

OBJECTIVE To determine whether improvements in glycemic control and diabetes-specific quality of life (QoL) scores reported in research studies for the type 1 diabetes structured education program Dose Adjustment For Normal Eating (DAFNE) are also found when the intervention is delivered within routine U.K. health care. RESEARCH DESIGN AND METHODS Before and after evaluation of DAFNE to assess impact on glycemic control and QoL among 262 adults with type 1 diabetes. RESULTS There were significant improvements in HbA1c from baseline to 6 and 12 months (from 9.1 to 8.6 and 8.8%, respectively) in a subgroup with suboptimal control. QoL was significantly improved by 3 months and maintained at both follow-up points. CONCLUSIONS Longer-term improved glycemic control and QoL is achievable among adults with type 1 diabetes through delivery of structured education in routine care, albeit with smaller effect sizes than reported in trials.

Substantial reductions in the number of diabetic ketoacidosis and severe hypoglycaemia episodes requiring emergency treatment lead to reduced costs after structured education in adults with Type 1 diabetes.

To determine the impact of structured education promoting flexible intensive insulin therapy on rates of diabetic ketoacidosis, and the costs associated with emergency treatment for severe hypoglycaemia and ketoacidosis in adults with Type 1 diabetes.