Disparities in pediatric oncology patient education and linguistic resources: results of a national survey of pediatric oncologists.

BACKGROUND: Extensive patient and family education is required at the time of a new diagnosis of pediatric cancer yet little data exist regarding the availability and linguistic competency of new cancer diagnosis education provided by pediatric oncology institutions. PROCEDURE: Using the American Society of Pediatric Hematology/Oncology (ASPHO) membership list, a web-based survey was conducted among a cohort of pediatric oncologists to determine pediatric oncologists' assessment of institutional resources for new cancer diagnosis education and the availability of linguistically appropriate education.
RESULTS: Of 1,294 ASPHO members sent email survey invitations, 573 (44.3%) responded with 429 meeting eligibility criteria. Oncologists at academic institutions reported their institutions had more availability of resources for new diagnosis education compared with those from non-academic institutions (mean 78.6 vs. 74.3; 0 [not at all]-100 [well equipped]; P = 0.05). The mean score increased with volume of new cancer diagnoses/year: small (<75) = 73.4; medium (75-149) = 76.7; large (>150) = 84.5 (P < 0.001). Oncologists at large volume institutions reported more availability of an established patient education protocol (50.8% vs. 38.1%, P < 0.001) and increased use of dedicated non-physician staff (79.9% vs. 66.1%, P = 0.02), but less use of websites for patient education (17.2% vs. 33.3%, P = 0.001). Availability of linguistically appropriate education improved with increasing institution size: small (76.4), medium (82.3), and large (84.0) patient volume (P < 0.011).
CONCLUSION: According to pediatric oncologists, a disparity in educational and linguistic resources for new pediatric cancer diagnosis education exists depending on institution type and size.