Do-it-yourself artificial pancreas systems in type 1 diabetes: perspectives of two adult users, a caregiver and three physicians

Advances in continuous glucose monitoring and insulin pumps have allowed people with type 1 diabetes (T1D) and caregivers to accurately and continuously measure their glucose levels and make adjustments to insulin infusion. In recent years, algorithms for subcutaneous insulin dosing have been developed that can respond to changes in glucose in an automated fashion and “close the loop”. At present, a first-generation ‘hybrid closed-loop’, ‘artificial pancreas’ or ‘automated insulin dosing’ system, Medtronic 670G, is available commercially. Further systems are in clinical trials. Frustrated by the slow pace of innovation, people affected by diabetes have united online under the hashtag ‘#WeAreNotWaiting,’ to disseminate open-source diabetes technologies. One dimension of #WeAreNotWaiting is “looping” with a do-it-yourself artificial pancreas. Here we provide the perspectives of two adults with T1D, the parent of a child with T1D and three physicians who detail their experience with these systems. These personal and clinical perspectives highlight very clear metabolic and psychological benefits of these systems in real-world settings

Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's Disease patients

Peer reviewedPublisher PD

Quality of life in couples living with Huntington’s disease: the role of patients’ and partners’ illness perceptions

Research suggests that chronically ill patients and their partners perceive illness differently, and that these differences have a negative impact on patients’ quality of life (QoL). This study assessed whether illness perceptions of patients with Huntington’s disease (HD) differ from those of their partners, and examined whether spousal illness perceptions are important for the QoL of the couples (n = 51 couples). Partners reported that their HD-patient spouses suffered more symptoms and experienced less control than the patients themselves reported. Illness perceptions of patients and partners correlated significantly with patient QoL. Partners’ beliefs in a long duration of the patients’ illness and less belief in cure, were associated with patient vitality scores. Suggestions for future research emphasize the importance of qualitative research approaches in combination with cognitive-behavioural approaches

Further evidence of reliability and validity of the Huntington’s disease quality of life battery for carers: Italian and French translations

Background Existing research suggests that family caregivers of persons with Huntington’s disease (HD) face a distinct series of problems, linked to the complex nature of the disease. Aubeeluck and Buchanan (Clin Genet, 71(5):434–445, 2007) developed and validated a disease-specific measure used to explore caregivers quality of life and assess the efficacy of therapeutic interventions. This current study builds on this research through the validation of French and Italian translations of the Huntington’s disease quality of life battery for carers (HDQoL-C). Method A total of 301 family carers completed the HDQoL-C. Participants were recruited through the “Euro-HDB” study which is measuring the burden in HD across Europe and the USA. Results Factor analysis demonstrated good internal consistency, reliability and congruent validity. Carers who cared for patients with less clinically severe symptoms reported significantly better QoL than carers of patients with more clinically severe symptoms. Discussion Findings indicate the HDQoL-C is multi-lingual, multi-cultural and easily applicable in other languages