Sick Kids’ transition program should not be closed

MIRIAM KAUFMAN I was recently stunned to hear that Toronto’s Hospital for Sick Children is planning to close the internationally acclaimed Good 2 Go Transition Program (G2G).

It wasn’t very long ago that most children with serious conditions died in childhood or adolescence. Pediatric researchers and clinicians have worked to extend the lives of these children well into adulthood.

Sick Kids has led a large number of these successful efforts. Many children with chronic conditions such as type 1 diabetes or cystic fibrosis now grow up and move into adult lives and adultoriented health care, a system that has a different approach, and even culture, than the family-centred pediatric system.

In 2006, Sick Kids, recognizing that young people and their families need to be carefully prepared for the move to adult services, started the Good 2 Go Transition Program. This program has been granted “leading practice” status by Accreditation Canada and is recognized internationally for its leadership.

The small G2G team has created re- sources that are freely available to families and health care workers everywhere. G2G works with clinical programs at Sick Kids to choose from this menu of resources and to customize them to best suit the needs of patients and families. And yet, with all these accomplishments, G2G will end in three months.

Joe was 17 with kidney problems in 2010. He had a hard time “remembering” to take his medications, so his mother supervised this. When he turned 18, he was referred to an adult kidney doctor.

He and his girlfriend moved in together. He felt intimidated at the new hospital and did not return. He stopped taking his medication and his kidneys quickly took a turn for the worst. He didn’t notice any difference in how he felt, until it was too late: he ended up in an emergency department. Dialysis was now his only option until a replacement kidney could be found.

Nahid was also 17 with kidney failure but in 2014, a transition program was instituted. She was seen regularly by a G2G member at her clinic visits, who helped her with strategies to take her medications, answered her questions about the effect of alcohol on her condition and discussed her life plans.

At her last Sick Kids visit, she met a doctor, nurse and social worker from Toronto General Hospital where she would be receiving her medical care. She met with a G2G member both as part of a small group with other graduating teens and individually and was assisted in making a laminated, wallet-sized card with her important health information. She felt comfortable going to her new clinic as she had met the staff already. She continues to do well, although she will need dialysis in the future. Without G2G, she could have easily ended up like Joe.

Transition planning is complex. G2G liaises with adult centres to help them provide appropriate care for young people; leads game-based group sessions for teens and parents; and facilitates transfer clinics.

As transition champions around the hospital leave, G2G supports staff to take their place. Services are provided to parents of adolescents who are not able to take responsibility for their own health decisions, recognizing that medical care for these individuals is often fragmented after age 18.

Some Sick Kids clinical programs now have robust transition services, others have not yet started the process of helping their patients make the move to the adult system and would benefit from the help of the G2G team.

I had the opportunity to help design and work with Good 2 Go until my retirement. G2G makes a crucial contribution to the care of chronically ill adolescents.

Now it is closing, ostensibly because the program is so successful it is no longer needed. This is ridiculous — Sick Kids isn’t running out of patients any time soon!

While G2G has lead to colossal improvements over the past 12 years, the needs and challenges facing young people are constantly evolving. Young people moving into the adult system need education and support from G2G. This misguided decision should be reversed.