Advancements in medical care for the hemophilia patients has created the need for an active and intentional process of transition from pediatric oriented health care to adult oriented health care. Instruments to measure transition “readiness” have not been validated in the adolescent and young adult (AYA) hemophilia population. The primary aim of this study was to identify the baseline state of transition readiness of hemophilia males in their ability to take charge of their own care as they transition from pediatrics to adult care using a validated Transition Readiness Assessment Questionnaire (TRAQ). Our secondary objective was: 1) To compare transition readiness between young adults who are transitioned to an adult hemophilia clinic in a separate facility versus those who continue to receive care in the same facility but transitioned to an adult provider.
Methods:
For this purpose, we conducted a cross-sectional study at the Hemophilia study of Western New York (HCWNY), Buffalo (same facility) and at Children’s Hospital of Michigan (CHM), Detroit (separate facility). Inclusion criteria: 1) males who are currently 16-21 years old, 2) diagnosis of hemophilia A and B regardless of severity, 3) ability to read English at a grade 8 level. TRAQ is a 20-item, 5- domain patient-reported assessment of health and health care self-management skills with possible scores ranging from 1 (low) to 5 (optimal). Parents/legal guardians of patients aged 16 to 17 and patients aged 18-21 were mailed a letter explaining the study in detail. The willing participants were directed to the questionnaire link. The responses were anonymous which were directly imported into excel spread sheet without collecting any identifying information of the participants.
Results:
A total of 13 individuals at the two sites participated. Amongst these, there were 5 from the HCWNY site, 1 with mild hemophilia and 1 patient reported unknown severity. The mean overall TRAQ score was 4+0.8. The mean scores for the different subscales were: managing medications (4.2+0.8), appointment keeping (4.1+0.9), tracking health issues (3.6+1.2), talking with providers (4.4+1.2) and managing daily activities (4.1+1.1). No differences in the overall and the subscales scores was noted between the two centers (Wilcoxon rank sum for all p>0.05).
Conclusions:
Our results suggest that the hemophilia youth in our population appear to have good readiness to transition from pediatric to adult care. We did not find a difference between the two different clinical care settings. The tracking health issues portion of TRAQ demonstrated the least readiness. Our study demonstrates that transition readiness assessments can be implemented in the hemophilia treatment centers, which can be used to guide clinical care.