Transition to Adulthood Can Lead To Lapses In Care For Young CF Patients

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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shutterstock_146347364Young people who suffer from physical disabilities or illnesses, such as cystic fibrosis, don’t always receive all of the necessary care and support they need to make a transition to care services. These are the conclusions of a study from the English Care and Quality Commission that reviewed the adjustments children with health complications need to switch into adult services.

During the vulnerable transition process, youngsters stop receiving health services that followed them since they were children, which include support mobility, breathing, swallowing, or pain care. When they change to the equivalent adult service, it can be structured in a different way. Moreover, this change in care can be an even more significant problem when children’s care services stop providing care to the patient before equivalent adult services have begun, thus leaving the patient vulnerable to health complications. In addition, families are often confused and distressed by the lack of information and support given, according to the study.

The Commission has established three priorities, which they believe may help defray these transition issues. First, “commissioners and providers must listen to, involve and learn from young people and their families and understand what they want from their care.” Second, national guidance on continuing care “must be followed so that young people are appropriately supported and GPs should be more involved at an earlier stage.” Third, the services “must be tailored to meet the needs of young people transferring from children’s health services and include extra training for health care staff in caring for young people.”

The study not only analyzed information from young people between 14 and 25 years-old who have shared their experience of transition, but also their parents’ experiences as well. For the study, the commission approached 100 clinical commissioning groups (CCG), inspected 23 care providers services designed to people experiencing the transition and reached health care professionals and commissioners who work with youngsters.

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CF affects more than 30,000 children and young adults in the United States alone, with the disease affecting the vast majority of the patient population in early childhood. As a result, improving patient care and adherence is a key objective for health practitioners who care for those with the disease.