Surgeon crossover between pediatric and adult centers is associated with decreased rate of loss to follow-up among adolescent renal transplantation recipients.

The risk of adverse outcomes for pediatric renal transplant patients is highest during the transition from pediatric to adult care. While there have been many studies focus on graft failure and death, loss to follow-up likely plays a large role in patient outcomes. We hypothesize patients are lost to follow-up during this transition period and that patients transplanted at pediatric centers with a closely affiliated adult center (AFFs) are less likely to suffer from fragmentation of care and become lost to follow-up. AFFs were defined as those pediatric centers whose transplant surgeons were also on staff at an adult center and were identified using center websites. We included patients undergoing renal transplantation at <=18 years of age and had data for the entire transition period on the Scientific Registry of Transplant Recipients (n = 6,762, 92.3% in 95 AFFs). 32% of patients were lost to follow-up. On regression, patients transplanted at AFF were 33% less likely to be lost to follow-up compared with those from non-AFF (OR 0.67 CI 0.54-0.82, P < 0.01). The proportion of patients lost to follow-up during the transition period is remarkably high, but lower among recipients transplanted at AFFs. Poor follow-up may be mitigated by improving integration of care.

Assessing the Understandability and Actionability of Online Neurosurgical Patient Education Materials.

BACKGROUND: Most Americans consult the Internet to address their health concerns. Limited health literacy among the public highlights the need for patient education Web sites to deliver understandable health information. We assessed the understandability and actionability of online neurosurgical patient education materials (PEMs) provided by the American Association of Neurological Surgeons (AANS) and MedlinePlus. METHODS: Articles on neurosurgical conditions and treatments listed on both the AANS site and MedlinePlus were analyzed. Two reviewers scored articles using 2 validated health literacy tools, the Centers for Disease Control and Prevention Clear Communication Index (CCI) and the Agency for Healthcare Research and Quality (AHRQ) Patient Education Materials Assessment Tool (PEMAT). These tools evaluate the quality of written health information and assess for content, organization, and actionability of PEMs. RESULTS: One hundred and thirty-eight articles were evaluated from the AANS (n = 61) and MedlinePlus (n = 77). The median CCI score for MedlinePlus and AANS articles was 68.9 (interquartile range [IQR], 62.5-81.3) and 56.3 [IQR, 46.7-73.7], respectively (P < 0.001). Only 1 article scored ≥90%, which is the CCI threshold for PEMs to be considered easy to read. Although the AANS and Medline performed similarly on the understandability component of the PEMAT (66.7 [IQR, 53.8-69.2] vs. 69.2 [IQR, 66.7-83.3], respectively; P < 0.001), significant differences were observed for the actionability section of the PEMAT (Medline 60 [IQR, 60-60] vs. AANS 0 [IQR, 0-60]; P < 0.001). Less than 13% of articles provided summaries, visual aids, and tangible tools to aid patient action. CONCLUSIONS: Neurosurgical online PEMs may be difficult to understand and potentially act as barriers for patients' engagement with health systems. There is a need to deliver patient-centered health information that effectively informs patients, aiding in meaningful health decision making.