Ask the Expert: Lost in Transition

Change is constant - from the day we are born, our environment is in a constant process of change. For the most part, we are wired to adapt to these changes. Mostly - until a major life event that tends to disrupt the normal ups and downs along the journey. Cancer is one such event. Childhood cancer brings with it a specific set of challenges. Normal growth and development milestones are paired with not so normal milestones; keeping up to date with immunization schedules versus chemotherapy/radiation/surgery schedules. The focus tends to be on the here and now; surviving today rather than the future. Life becomes a balancing act of schedules - school, doctor’s appointments, soccer, chemotherapy, play dates, scans, sleepovers, follow-up visits, family time, to mention just a few.

Then your child becomes a young adult and what has become your new normal is about to change again. You are now transitioning to the adult care world. A new team, with new schedules, new rules, new everything. This transition does not happen in a vacuum. Adolescence/young adulthood brings its own challenges. Finishing high school, choosing colleges, employment, relationships, contemplating moving out on your own, etc. Add to this a new health care team and you are off to the races. It is not surprising that some young adults and their families feel lost in the transition from the pediatric setting to the adult care setting.

Multiple factors contribute to the difficulty of the transitioning process. Survivors of childhood cancer may be focused on rebuilding their lives (they may have missed out on important events while in treatment such as attending prom) and just want to move on. Lack of education regarding late effects and the importance of early detection of secondary cancers and other treatment related health risks also contribute the difficulty of the transition. Another barrier is limited and/or available resources. In British Columbia, the majority of treatment for childhood cancer is provided in Vancouver, with families traveling from all over the province in order to receive treatment. Once treatment is completed, families return to their communities, where available resources might be limited. These limitations include, but are not limited to, lack of experienced health care practitioners (specific to late effects and the complexity of childhood cancer survivorship), financial concerns, ongoing mental health concerns, and more.

Research shows that the success of the transition process lies in early, purposeful planning with a biopsychosocial (physical, mental and social) approach. This should be a process that includes ongoing dialogue that includes the health care team, the patient, the family and the community. Keeping a complete medical record is extremely important. This could be an ongoing process, requesting a copy of test results and clinic notes, or requesting a complete medical record at the end of treatment. The importance of ongoing medical surveillance should also be a part of the continual discussion, including the health concerns related to specific diagnoses and treatments.

As mentioned before, the transition should also include mental health resources like counselling and/or support groups. Survivors demonstrates remarkable resilience, however some may demonstrate post-traumatic stress symptoms following their diagnosis and treatment. Linkage to a mental health care team is important. Career and vocational planning is another part of the transition process. Unfortunately, this is an area with fewer resources, often linked to funding sources that are limited or changing all the time.

The ultimate goal in the pediatric-to-adult transition process it to provide the necessary education and information for continuality of care that promotes healthy habits, as well as ongoing surveillance that promotes prevention and/or early detection of treatment related health concerns and the tools/resources that address planning for the future.

Thank you to Susara A. Joubert, MSW, RSW, for sharing her expertise. 

Susara completed her MSW degree at The University of Houston in 2001. Following an internship at University of Texas M.C. Anderson Cancer Center, she was hired as a full-time social work counsellor. For the next eight years, Susara’s primary assignment included the Gastrointestinal Cancer Outpatient Clinic; however she also provided coverage in the Brain and Spine Clinic, and Children and Adolescents Clinic. Susara moved to Vancouver in November 2008 and since has been with the BC Children’s Hospital as a social worker in the Department of Oncology/Hematology and BMT.

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