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Good 2 Go
Good 2 Go

Research

While many clinicians, adolescents and their parents agree that transition interventions are needed, there is little evidence to support what types of interventions actually make a difference. A handful of researchers have looked at pre and post-satisfaction questionnaires for youth and their families around the transition period, and some have started examining concrete outcome measures before and after a transition intervention was implemented.  Nonetheless, there is much more research needed in the transition field to learn how to best support youth throughout transitions.

The Good 2 Go team aims to meet the challenge of improving transitions at SickKids in an informed, rigorous and scientific manner. We would like to increase transition efforts throughout SickKids by promoting those techniques that have the best evidence to support their efficacy. We also aim to aid programs in the testing of existing and new interventions with strong research designs. Together, we can better understand our patients’ needs and move the transition field forward.  

Support of research and quality improvement projects at SickKids is part of Good 2 Go’s four domains of activities. We are eager to assist clinicians and researchers at SickKids and their adult health-care partners in developing ways of evaluating transition program initiatives at any scale.  Contact us for an appointment.

Here is an outline of easy-to-understand steps to conduct research, an example of a transition-related research problem and some example outcome measures.

Steps to conduct research

1.       Define the problem

  • What would you like to change?
  • What do you worry is not working well now?

2.       Demonstrate the problem with data

3.       Plan an intervention

  • Are your outcome measures operationalized?
  • What transition intervention(s) would you like to implement?
  •  What kind of research design makes sense for your clinic? For example:
    • Cross sectional versus longitudinal
    • Within subjects versus between subjects
  • Power analysis; how many subjects do you need to show an effect?

4.       Share your results

  •    Who would be interested in knowing your findings?

Transition-related research example 

Some clinicians and researchers are concerned that their paediatric patients delay their first adult appointment well past the time frame that is recommended. The first step in tackling this problem would be to collect objective data—specifically, the number of days between the last paediatric and the first adult appointment. If it was determined that 30 per cent of patients did not make it to their first adult health care appointment within two years of their last paediatric appointment despite the recommendation that they meet with an adult provider within a year, further research may be conducted to determine the reason for the delay and subsequently design a transition intervention to improve (lower) this percentage.

Example outcome measures:

Outcome

Operational measurement

Duration until first adult appointment

Number of days between the last pediatric appointment to the first adult health-care appointment minus the number recommended

Patient adherence to medical regimen

Number of refills in last year minus the number recommended

Decreased depression

Score on the Children’s Depression Inventory

Decreased anxiety

Score on the Children’s Anxiety Inventory

Patient increased satisfaction with the pediatric health-care system

Develop a satisfaction questionnaire that is implemented before and after an intervention

Increase quality of life for the patient

Quality of Life questionnaire

Patient acquisition of employment

Number of days working in the past year

Stability of illness:

Diabetes

HIV

HbA1c levels

CD4 count, viral load