Political concerns in transitioning medical care

As more children with long-term congenital conditions survive into adulthood, the need for successful transition of care from pediatric providers to adult care providers becomes more important. This chapter considers how laws, rules, and regulations of medical specialties, hospital systems and governments affect this transition. The effect of governmental support programs on this process are reviewed. The differences that exist between countries like the United States (where health care is primarily supported by private insurance and government sponsored programs) alongside countries like Canada and the United Kingdom, which have a more socialized health insurance policy, are examined. The impact on access to healthcare, of cultural issues and differences that exist in adolescents and emerging adults across the world are also assessed. Finally, some of the differences in the ranges of services provided in different countries and organizations that have played a role in supporting patients and families with congenital conditions across the world are considered

Elucidating the burden of recurrent and chronic digital ulcers in systemic sclerosis: long-term results from the DUO Registry

Objectives Digital ulcers (DUs) occur in up to half of patients with systemic sclerosis (SSc) and may lead to infection, gangrene and amputation with functional disability and reduced quality of life. This study has elucidated the burden of SSc-associated DUs through identification of four patient categories based on the pattern of DU recurrence over a 2-year observation period.Methods Patients with SSc-associated DUs enrolled in the Digital Ulcers Outcome Registry between 1 April 2008 and 19 November 2013, and with 2years of observation and 3 follow-up visits during the observation period were analysed. Incident DU-associated complications were recorded during follow-up. Work and daily activity impairment were measured using a functional assessment questionnaire completed by patients after the observation period. Potential factors that could predict incident complications were identified in patients with chronic DUs.Results From 1459 patients, four DU occurrence categories were identified: 33.2% no-DU; 9.4% episodic; 46.2% recurrent; 11.2% chronic. During the observation period, patients from the chronic category had the highest rate of incident complications, highest work impairment and greatest need for help compared with the other categories. Independent factors associated with incident complications included gastrointestinal manifestations (OR 3.73, p=0.03) and previous soft tissue infection (OR 5.86, p=0.01).Conclusions This proposed novel categorisation of patients with SSc-associated DUs based on the occurrence of DUs over time may help to identify patients in the clinic with a heavier DU burden who could benefit from more complex management to improve their functioning and quality of life