B. Cao1,2, F. C. Njoku1,3, Y. J. Bababekov1, A. King1, B. J. Luby1, D. C. Chang1, H. Yeh1 1Massachusetts General Hospital,Department Of Surgery,Boston, MA, USA 2University Of Rochester,School Of Medicine,Rochester, NY, USA 3University Of California – Irvine,School Of Medicine,Orange, CA, USA
Introduction:
The period of transition from pediatric to adult care in organ transplant patients is associated with increased risk of graft loss, which may be attributed to poor compliance secondary to knowledge gaps. Previous work has largely utilized subjective questionnaire tools to assess patient readiness to transition to the adult health care system. We observed anecdotally that patient perception of readiness did not always correspond to caregiver perception, so we developed a novel objective questionnaire to assess the accuracy of these perceptions.
Methods:
Pediatric kidney and liver transplant patients ≥ 15 years old completed paired subjective and objective transition readiness questionnaires measuring health knowledge, self-management skills, and psychosocial adjustment. Patients completed the surveys while being seen in the transplant clinic or over the telephone. Each paired survey question was considered in “agreement” if the patient’s answers to both the subjective and objective forms of the question matched; “overconfident” if the patient answered the subjective form of the question claiming full knowledge but was unable to answer the objective form of the question accurately; and “underconfident” if the patient answered the subjective form of the question doubting their knowledge but was able to answer the objective form of the question accurately. Non-parametric tests and regression analysis were used to determine differences in survey responses based on age, gender, time since transplant, and type of organ transplant.
Results:
Of the 47 patients identified as age ≥ 15 years old, 21 completed the survey (44.7%). The patients ranged from age 15 to 25 years old. The median percent of paired questions scored as “agreement,” “overconfident,” and “underconfident” were 68.2% (IQR = 66.7%-77.3%), 18.2% (IQR = 9.1%-27.3%), and 9.5% (IQR = 4.5%-13.6%). Age >18 years old at the time of questionnaire completion and liver transplantation (vs. kidney transplantation) were associated with slightly higher rates of overconfidence, but these differences were not statistically significant. Male gender and greater time since transplant were associated with slightly lower rates of overconfidence, but again, these were not statistically significant.
Conclusion:
Accurately assessing transition readiness among pediatric transplant patients is vital in educating and supporting patients as they prepare to transition to independent care. We found that patients’ perception of their skills agreed with their demonstrated skills less than 70% of the time. This disconnect suggests that not all adolescent and young adult patients may be ready to make informed decisions regarding their care. Moreover, assessment tools depending only on subjective questionnaires may not adequately guide patient education or accurately determine readiness for transition and transfer.