This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns.

BackgroundYoung people with type 1 diabetes often struggle to self-manage their disease. Mobile health (mHealth) apps show promise in supporting self-management of chronic conditions such as type 1 diabetes. Many health care providers become involved in app development. Unfortunately, limited information is available to guide their selection of appropriate methods, techniques, and tools for a participatory design (PD) project in health care.ObjectiveThe aim of our study was to develop an mHealth app to support young people in self-managing type 1 diabetes. This paper presents our methodological recommendations based on experiences and reflections from a 2-year research study.MethodsA mixed methods design was used to identify user needs before designing the app and testing it in a randomized controlled trial. App design was based on qualitative, explorative, interventional, and experimental activities within an overall iterative PD approach. Several techniques and tools were used, including workshops, a mail panel, think-aloud tests, and a feasibility study.ResultsThe final mHealth solution was “Young with Diabetes” (YWD). The iterative PD approach supported researchers and designers in understanding the needs of end users (ie, young people, parents, and health care providers) and their assessment of YWD, as well as how to improve app usability and feasibility. It is critical to include all end user groups during all phases of a PD project and to establish a multidisciplinary team to provide the wide range of expertise required to build a usable and useful mHealth app.ConclusionsFuture research is needed to develop and evaluate more efficient PD techniques. Health care providers need guidance on what tools and techniques to choose for which subgroups of users and guidance on how to introduce an app to colleagues to successfully implement an mHealth app in health care organizations. These steps are important for anyone who wants to design an mHealth app for any illness.

BackgroundProviding care for adolescents with type 1 diabetes is complex, demanding, and often unsuccessful. Guided self-determination (GSD) is a life skills approach that has been proven effective in caring for adults with type 1 diabetes. To improve care, GSD was revised for adolescents, their parents, and interdisciplinary healthcare providers (HCP) to create GSD-Youth (GSD-Y). We evaluated the impact of GSD-Y after it was integrated into pediatric outpatient visits versus treatment-as-usual, focusing on glycemic control and the development of life skills in adolescents with type 1 diabetes.MethodsSeventy-one adolescents (mean age: 15 years, mean duration of diabetes: 5.7 years, mean HbA1c: 77 mmol/mol (9.1%), upon entering the study) from two pediatric departments were randomized into a GSD-Y group (n = 37, GSD-Y was provided during individual outpatient sessions) versus a treatment-as-usual group (n = 34). The primary outcome was the HbA1c measurement. The secondary outcomes were life skills development (assessed by self-reported psychometric scales), self-monitored blood glucose levels, and hypo- and hyperglycemic episodes. The analysis followed an intention-to-treat basis.ResultsFifty-seven adolescents (80%) completed the trial, and 53 (75%) completed a six-month post-treatment follow-up. No significant effect of GSD-Y on the HbA1c could be detected in a mixed-model analysis after adjusting for the baseline HbA1c levels and the identity of the HCP (P = 0.85). GSD-Y significantly reduced the amotivation for diabetes self-management after adjusting for the baseline value (P = 0.001). Compared with the control group, the trial completion was prolonged in the GSD-Y group (P <0.001), requiring more visits (P = 0.05) with a higher rate of non-attendance (P = 0.01). GSD-Y parents participated in fewer of the adolescents’ visits (P = 0.05) compared with control parents.ConclusionsCompared with treatment-as-usual, GSD-Y did not improve HbA1c levels, but it did decrease adolescents’ amotivation for diabetes self-management.Trial registrationISRCTN 54243636, registered on 10 January 2010. Life skills for adolescents with type 1 diabetes and their parents.

Aim of the databaseThe aim of the Danish Adult Diabetes Registry (DADR) is to provide data from both the primary health care sector (general practice [GP]) and the secondary sector (specialized outpatient clinics) to assess the quality of treatment given to patients with diabetes. The indicators represent process and outcome indicators selected from the literature.Study populationThe total diabetes population in Denmark is estimated to be ~300,000 adult diabetes patients. Approximately 10% have type 1 diabetes, which is managed mainly in the secondary sector, and 90% have type 2 diabetes with the majority (80%) being treated in primary health care. In 2014, DADR included data from a total of 70,826 patients.Main variablesThe following variables are assessed: date of analysis as well as the outcome for hemoglobin A1c, blood pressure, lipids, urinary albumin–creatinine ratio, smoking status, glucose-, blood pressure-, and lipid-lowering treatment (yes/no), insulin pump treatment (yes/no), and date of last eye and foot examination.Descriptive dataIn 2014, the annual report included data regarding over 38,000 patients from outpatient clinics, which is assumed to have included almost all patients in this setting, and >32,000 from GPs, reflecting improved but still limited coverage from this setting. The annual results are published in a compiled report of Danish Diabetes Care, which included DADR, data from the pediatric diabetes database, and the national ophthalmological diabetes database. The annual report is published, which included data on national, regional, and local level (individual outpatient clinics and corresponding GPs). This allows a comprehensive overview of diabetes care in Denmark.ConclusionThe database covers an increasing fraction of patients with diabetes in Denmark, and the structure for full coverage is in place. Annual reporting has helped to ensure focus on the quality of diabetes treatment in the primary and secondary health care. Furthermore, it is an important resource for Danish register-based diabetes research.