Although pediatric stem cell transplantation is associated with elevated risks for quality-of-life (QOL) deficits, morbidity, and late effects, little is known about how supportive care needs are addressed across different pediatric centers. This study examined practice patterns among centers enrolled in the Pediatric Blood and Marrow Transplant Consortium. In all, 65 centers (response rate = 82.2%) were surveyed regarding QOL screening, psychosocial intervention services, and long-term follow-up care. Approximately 80% of centers provided routine screening for psychological difficulties and pain. A smaller number screened for fatigue (69.2%), cognitive deficits (52.3%), sleep difficulties (60.0%) or spiritual concerns (38.5%). Screening was conducted predominantly via interview; little use was made of standardized measures. Community-based centers screened some deficits more frequently than did academic ones (all P's≤0.09). In all, 60% of centers provided support groups and 49.2% offered arts-in-medicine programs. Most centers provided extended follow-up care. In some, follow-up continued until age 21 (45.4%), while in others it was sustained indefinitely (40.6%). Findings suggest that QOL screening would be enhanced by greater attention to domains that currently receive limited scrutiny, and by increased use of validated measures to supplement interview information. The proportion of centers that provide extended follow-up is encouraging, and offers opportunities to study long-term outcomes.
- Follow-up care
- Pediatric bone marrow transplantation
- Quality of life screening
- Supportive care services
ASJC Scopus subject areas