A comparison of the acceptability and psychometric properties of scales assessing the impact of type 1 diabetes on quality of life-Results of 'YourSAY: Quality of Life'.

AIMS: To compare the acceptability, reliability and validity of five contemporary diabetes-specific quality of life (QoL) scales among adults with type 1 diabetes in the United Kingdom and Australia. METHODS: Adults with type 1 diabetes (UK = 1139, Australia = 439) completed a cross-sectional, online survey including ADDQoL-19, DCP, DIDP, DSQOLS and Diabetes QoL-Q, presented in randomised order. After completing each scale, participants rated it for clarity, relevance, ease of completion, length and comprehensiveness. We examined scale acceptability (scale completion and user ratings), response patterns, structure (exploratory and confirmatory factor analyses) and validity (convergent, concurrent, divergent and known groups). To assess cross-country reproducibility, analyses conducted on the UK dataset were replicated in the Australian dataset. RESULTS: Findings were largely consistent between countries. All scales were acceptable to participants: ≥90% completing all items, and ≥80% positive user ratings, except for DSQOLS' length. Scale structure was not supported for the DCP. Overall, in terms of acceptability and psychometric evaluation, the DIDP was the strongest performing scale while the ADDQoL-19 and Diabetes QoL-Q scales also performed well. CONCLUSIONS: These findings suggest that the recently developed brief (7 items), neutrally worded DIDP scale is acceptable to adults with type 1 diabetes and has the strongest psychometric performance. However, questionnaire selection should always be considered in the context of the research aims, study design and population, as well as the wider published evidence regarding both the development and responsiveness of the scales.

Supporting self-management after attending a structured education programme: a qualitative longitudinal investigation of type 1 diabetes patients' experiences and views.

BACKGROUND: Structured education programmes for patients with diabetes and other chronic conditions are being widely adopted. However, follow-up studies suggest that course graduates may struggle to sustain the self-care practices taught on their courses over time. This study explored the support needs of patients with type 1 diabetes after attending a structured education programme promoting an empowerment approach and training in use of flexible intensive insulin therapy, a regimen now widely advocated and used to manage this condition. The objective was to inform future support offered to course graduates. METHODS: Repeat, in-depth interviews with 30 type 1 diabetes patients after attending Dose Adjustment for Normal Eating (DAFNE) courses in the UK, and six and 12 months later. Data were analysed using an inductive, thematic approach. RESULTS: While the flexible intensive insulin treatment approach taught on DAFNE courses was seen as a logical and effective way of managing one's diabetes, it was also considered more technically complex than other insulin regimens. To sustain effective disease self-management using flexible intensive insulin treatment over time, patients often expected, and needed, on-going input and support from health care professionals trained in the approach. This included: help determining insulin dose adjustments; reassurance; and, opportunities to trouble-shoot issues of concern. While some benefits were identified to receiving follow-up support in a group setting, most patients stated a preference or need for tailored and individualised support from appropriately-trained clinicians, accessible on an 'as and when needed' basis. CONCLUSIONS: Our findings highlight potential limitations to group-based forms of follow-up support for sustaining diabetes self-management. To maintain the clinical benefits of structured education for patients with type 1 diabetes over time, course graduates may benefit from and prefer ongoing, one-to-one support from health care professionals trained in the programme's practices and principles. This support should be tailored and personalised to reflect patients' specific and unique experiences of applying their education and training in the context of their everyday lives, and could be the subject of future research.