Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

More young adults (YAs) with life limiting conditions (LLC) are surviving into adulthood as earlier diagnosis and improved medical management in pediatric care lead to higher rates of survival for cancer, congenital heart and neuromuscular conditions. When these YAs leave pediatric care, they leave behind comprehensive and coordinated health, social and education services for uncoordinated adult systems, with limited access to palliative services they received in pediatric care.

YAs with LLCs will benefit from a public health palliative approach to care. This approach better matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. Public health palliative care is a blended provision of health care and community services based on evidence that health care is most effective and least expensive when offered in conjunction with a complement of services that reflects social determinants of health and well-being. For YAs with LLCs, these resources will support their health, social, vocational, independent living, and educational goals to maximize their opportunities in an abbreviated time frame.


The objectives of this workshop are to:

1. Provide an overview of the young adult population with palliative care needs.
2. Discuss current care of this population.
3. Highlight results from three recent projects to examine and address needs of this population.
4. Dialogue with audience about other programs, initiatives, or ideas to address the needs of this population.

We look forward to robust conversations and ideas from your practice and research.

Future trends in cystic fibrosis demography in 34 European countries

Median survival has increased in people with cystic fibrosis (CF) during the past six decades, which has led to an increased number of adults with CF. The future impact of changes in CF demographics has not been evaluated. The aim of this study was to estimate the number of children and adults with CF in 34 European countries by 2025. Data were obtained from the European Cystic Fibrosis Society Patient Registry. Population forecasts were performed for countries that have extensive CF population coverage and at least 4 years of longitudinal data by modelling future entering and exiting flows in registry cohorts. For the other countries, population projections were performed based on assumptions from knowledge of current CF epidemiology. Western European countries' forecasts indicate that an increase in the overall number of CF patients by 2025, by approximately 50%, corresponds to an increase by 20% and by 75% in children and adults, respectively. In Eastern European countries the projections suggest a predominant increase in the CF child population, although the CF adult population would also increase.It was concluded that a large increase in the adult CF population is expected in the next decade. A significant increase in adult CF services throughout Europe is urgently required.