Development of a Pediatric HSCT Multi-Disciplinary Survivor Clinic

Pediatric cancer survivorship is a growing subspecialty however few clinicians focus solely on survivors of hematopoietic stem cell transplant (HSCT). There were 100,000 HSCT survivors in the US in 2009 and an estimated 250,000 survivors by 2020 (CIBMTR data).  Approximately 80% of pediatric HSCT patients survive at least two years post transplant and are expected to become long term survivors. Post-transplant complications are the third cause of death in this patient population.  The focus of clinical management then shifts toward decreasing the morbidity of long-term treatment effects through early detection and intervention.

We piloted a multi-disciplinary pediatric HSCT survivor clinic. From more than 400 patients transplanted at our center between 2003 and 2011, 32 patients were seen at one of 5 long-term follow-up clinic days in July and August 2012.  Eligible patients were at least one year post HSCT and off immune suppression, and were invited based on availability. Fourteen patients were male, 18 female. Average age at time of transplant was 6.7 years (0.1-17 years); average age at time of survivor clinic was 10.7 years (range 2-20 years). Most were greater than 4 years post HSCT (range 17-117 months) and had undergone allogeneic HSCT. The most common late effects detected were musculoskeletal (59%, primarily vitamin D deficiency and bone mineral loss), and endocrine (56%). Cardiac late effects were seen in 2 patients and were not life threatening (1 hypertension and 1 hyperlipidemia). Pulmonary late effects were seen in 9% of patients, dermatologic in 12%, psychological in 18% and 44% were categorized as other, mostly low vaccine titers. No second malignancies were identified. School performance concerns were common (n= 40%).

More than 40 referrals were generated to other pediatric specialists as a result of our evaluation. A comprehensive cancer summary with specific recommendations from the multi-disciplinary team was mailed to each patient and appropriate medical providers.

Late effects in the growing population of HSCT survivors are common and, thus create an obligation to screen, apply early interventions, and refer to appropriate specialists as part of their post-transplant care.