What is diabetes distress and how can we measure it? A narrative review and conceptual model.

BACKGROUND: Diabetes distress is the negative emotional impact of living with diabetes. It has tangible clinical importance, being associated with sub-optimal self-care and glycemic control. Diabetes distress has been operationalized in various ways and several measures exist. Measurement clarity is needed for both scientific and clinical reasons. OBJECTIVES: To clarify the conceptualization and operationalization of diabetes distress, identify and distinguish relevant measures, and evaluate their appropriateness for this purpose. RESULTS: Six measures were identified: Problem Areas in Diabetes (PAID) scale, Diabetes Distress Scale (DDS); Type I Diabetes Distress Scale (T1-DDS), Diabetes-specific Quality of Life Scale-Revised (DSQoLs-R) 'Burden and Restrictions-Daily Hassles' sub-scale, Well-being Questionnaire 28 (W-BQ 28) 'Diabetes Well-being' sub-scale, and Illness Perceptions Questionnaire-Revised (IPQ-R) 'Emotional Representations' sub-scale. Across these measures a broad spectrum of diabetes distress is captured, including distress associated with treatment regimen, food/eating, future/complications, hypoglycemia, social/interpersonal relationships, and healthcare professionals. No single measure appears fully comprehensive. Limited detail of the qualitative work informing scale design is reported, raising concerns about content validity. CONCLUSIONS: Across the available measures diabetes distress is seemingly comprehensively assessed and measures should be considered in terms of their focus and scope to ensure the foci of interventions are appropriately targeted.

The detection and management of diabetes distress in people with type 1 diabetes.

Diabetes distress (DD) represents a significant clinical burden in which levels of DD are related to both glycated haemoglobin (HbA1c) and some self-management behaviours. DD is related to, but different from, depression. Differences in DD experienced in people with type 1 and type 2 diabetes have been observed. Commonly measured using the Problem Areas in Diabetes Scale (PAID) and the Diabetes Distress Scale (DDS), rates of elevated DD in research study participants range from 20 to 30 %. Risk factors for elevated DD in type 1 diabetes are longer duration of diabetes, severe hypoglycaemia, younger age and being female. A systematic review of intervention studies assessing DD identified eight randomised controlled trials (RCTs) and nine pre-post design studies. Only three studies targeted DD with the intervention. Intervention types were diabetes self-management education (DSME), psychologically informed self-management and devices. DSME pre-post studies, namely the Dose Adjustment For Normal Eating (DAFNE) programme, produced more consistent improvements in DD and HbA1c at follow-up. Psychologically informed self-management was more heterogeneous, but several RCTs were effective in reducing DD. Group interventions offered the greatest benefits across intervention designs.

Improving health outcomes for young people with long term conditions: The role of digital communication in current and future patient-clinician communication for NHS providers of specialist clinical services for young people - LYNC study protocol.

BACKGROUND: Young people living with long term conditions are vulnerable to health service disengagement. This endangers their long term health. Studies report requests for digital forms of communication - email, text, social media - with their health care team. Digital clinical communication is troublesome for the UK NHS. AIM: In this article we aim to present the research protocol for evaluating the impacts and outcomes of digital clinical communications for young people living with long term conditions and provide critical analysis of their use, monitoring and evaluation by NHS providers (LYNC study: Long term conditions, Young people, Networked Communications). METHODS: The research involves: (a) patient and public involvement activities with 16-24 year olds with and without long term health conditions; (b) six literature reviews; (c) case studies - the main empirical part of the study - and (d) synthesis and a consensus meeting. Case studies use a mixed methods design. Interviews and non-participant observation of practitioners and patients communicating in up to 20 specialist clinical settings will be combined with data, aggregated at the case level (non-identifiable patient data) on a range of clinical outcomes meaningful within the case and across cases. We will describe the use of digital clinical communication from the perspective of patients, clinical staff, support staff and managers, interviewing up to 15 young people and 15 staff per case study. Outcome data includes emergency admissions, A&E attendance and DNA (did not attend) rates. Case studies will be analysed to understand impacts of digital clinical communication on patient health outcomes, health care costs and consumption, ethics and patient safety.

Written emotional disclosure for adults with Type 2 diabetes: a primary care feasibility study.

AIM: To test the feasibility of written emotional disclosure (WED) for UK primary care patients with Type 2 diabetes. BACKGROUND: WED holds potential to address depressive symptoms in diabetes, yet its feasibility, and potential benefit, for primary care patients has not been established. METHOD: Forty-one adults with Type 2 diabetes were randomised to WED (n=23) or neutral writing (n=18). Principal outcomes were feasibility of recruitment, compliance, acceptability and intervention fidelity. Potential benefit was assessed on between-group differences in depressive symptoms (Centre for Epidemiological Studies Depression scale), diabetes distress (Problem Areas in Diabetes scale), diabetes self-management behaviours (Summary of Diabetes Self-care Activities questionnaire) and perceived health status (EQ-5D) at three-month follow-up. FINDINGS: Recruitment was modest (6%), yet an unmet treatment need was identified. Fourteen intervention (61%) and 13(72%) control participants returned their writing, while 12 in each group (89%) then completed all sessions. Intervention fidelity was confirmed. Acceptability to patients was mixed. Exploratory effectiveness analyses suggested that relative to improvement in controls, WED is associated with a potentially clinically important worsening in depressive symptoms (P=0.006) and a non-significant trend for a reduction in healthy dietary behaviour (P=0.057). There was no significant effect on other outcomes. The exploratory nature of the study, however, necessitates that the observed effects are interpreted with caution, and both the feasibility and effectiveness findings may be an artefact of the sample obtained. The evidence for the feasibility of WED in primary care diabetes was hence mixed, and in an unevaluated environment it may cause iatrogenic harm. On balance, WED is apparently not appropriate for use in this context in its current format. At most, further research with a more appropriate sample is required. The feasibility that was demonstrated and the unmet need identified suggest that this may be a worthy endeavour.

Retrospective review of the drop in observer detection performance over time in lesion-enriched experimental studies.

The vigilance decrement describes a decrease in sensitivity or increase in specificity with time on task. It has been observed in a variety of repetitive visual tasks, but little is known about these patterns in radiologists. We investigated whether there is systematic variation in performance over the course of a radiology reading session. We re-analyzed data from six previous lesion-enriched radiology studies. Studies featured 8-22 participants assessing 27-100 cases (including mammograms, chest CT, chest x-ray, and bone x-ray) in a reading session. Changes in performance and speed as the reading session progressed were analyzed using mixed effects models. Time taken per case decreased 9-23% as the reading session progressed (p < 0.005 for every study). There was a sensitivity decrease or specificity increase over the course of reading 100 chest x-rays (p = 0.005), 60 bone fracture x-rays (p = 0.03), and 100 chest CT scans (p < 0.0001). This effect was not found in the shorter mammography sessions with 27 or 50 cases. We found evidence supporting the hypothesis that behavior and performance may change over the course of reading an enriched test set. Further research is required to ascertain whether this effect is present in radiological practice.