Читать книгу Blood and Marrow Transplantation Long Term Management - Группа авторов - Страница 144

Compliance with LTFU guidelines is suboptimal with non‐adherence by survivors and healthcare providers [9,10,117]. Young adults are most at risk, often because routine LTFU attenuates over time, possibly more at risk if their HCP perceives that the patient is doing well. Given the latency of late effects, LTFU requires education of survivors, their families, and also their pediatric and future adult HCPs. The Institute of Medicine has recommended that all survivors receive treatment summaries with individualized care plans [118]. Survivorship care plan usage appears to improve quality of life among HCT survivors [119]. There is inability of transplant centers to provide comprehensive survivorship care. More work is needed to assess the impact of models of survivor care [120, 121]. An ASTCT Practice Guidelines Committee survey found that respondents agreed that allogeneic HCT survivors have needs separate from GVHD, that complications could arise during transitions of care from pediatric to adult or from transplant center to PMD, but 55% did not have an LTFU clinic; 84% of individual practitioners prefer to provide their own survivorship care. Other barriers include a lack of expertise in sub‐specialties relevant to LTFU, logistics of the LTFU model of care, and financial issues [120]. Clearly, there is much more work to be done to optimize LTFU particularly for pediatric HCT survivors who are more prone to becoming lost to follow‐up.