BCMA strives to ‘close the gap’ for youth with complex, chronic illnesses

VANCOUVER, BC – BC physicians are calling for more focused planning and resources for young people with complex and chronic conditions when they make the transition from pediatric care to the adult health care system.

Youth can access pediatric care services until their eighteenth birthday, when they must transfer, with little preparation, to adult care services provided by regional health authorities. Approximately 1700 patients per year make this transition.

In its just released policy paper entitled, Closing the Gap – Youth Transitioning to Adult Care in BC, the BCMA notes that as a result of improved treatments it is estimated that 90 per cent of pediatric patients with complex or chronic illness will reach the age of 20.  In some areas significant progress has been made.  In the 1960s the majority of children with cystic fibrosis did not live long enough to attend kindergarten, but today half of these patients are expected to live into their 40s and beyond. 

The profound success in extending the life of these young people into adulthood carries with it an unanticipated problem: how to transition these patients to an adult system that historically didn’t expect to care for them. 

“There are dual issues at play here that concern physicians,” says Dr. Shelley Ross, president of the BC Medical Association.  “On one hand our young people are falling through the cracks as many have trouble managing their condition in an unfamiliar adult system that is less structured than the pediatric system they are used to.  And on the other hand, physicians don’t necessarily have the training required to effectively take care of these young people and these conditions.”

The policy paper offers ten specific recommendations for improving care for pediatric patients ‘graduating’ to the adult acute care system including:

• Ensuring young patients have a family physician, as well as a pediatrician, from birth who is kept in the loop and will be familiar with the young patient upon transition;

• Providing ongoing support for specialist and family physicians to develop the necessary skills to manage young adults who transition into their care;

• Developing and implementing individualized transition plans;

• Developing a method to identify, track and evaluate successful transition and improving long-term health outcomes.

While both government and BC health authorities have acknowledged the importance of transition planning and some improvement has been achieved, there is no over-arching program in the province to address the unique needs of this growing patient group.  Without this support, these patients may receive fewer follow-up visits, fail to take their medication consistently or fail to seek help early for complications they may face – resulting in increased emergency room visits, unnecessary diagnostic testing or even death.

“Even though we have a pretty good health care system in BC, it really is designed for children and for adults, not for young adults living with complex conditions developed in childhood,” says Ms Jocelyn Tomkinson a young adult who has experienced transitioning out of the pediatric system.  “But now that we’re here, a better way has to be found to make sure we can live like adults and contribute to and manage our health care in a way that works for us.”

Ross notes that several existing joint working groups between the BC government and the BCMA are ideally suited to play a leading role in finding solutions, including the General Practice Services Committee, the Specialist Services Committee, and the Shared Care Committee.

“We have a prime opportunity to use the new physician master agreement to target existing resources and build on the success of our joint committees to work collaboratively with government and health authorities to not only improve the quality of life of these patients but ensure the physicians caring for them are armed with the tools they need to provide them the best possible care,” said Dr Ross.

The Shared Care Committee has underway a Youth Transitions initiative at BC Children’s Hospital that is working to address a number of challenges to seamless transition. The initiative is one component of a broader project developed at BC Children’s Hospital called ON TRAC that seeks to improve continuity of care for this vulnerable patient group.   

The Closing the Gap policy paper can be found on the BCMA website here. 

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For more information:
Sharon Shore,
Senior Manager, Communications and Media Relations
604-638-2832
604-306-1866 (pager)