Provision of Long-Term Monitoring and Late Effects Services Following Hematopoietic Cell Transplantation (HCT): A Survey of European Programs By the Complications and Quality of Life Working Party of the EBMT

Introduction:Wider indications and improvements in outcome continue to increase the number of HCT recipients requiring long term post-HCT survivorship care. The Institute of Medicine of the US National Academy of Sciences specifically recognizes the importance of coordination of care to optimize delivery in cancer survivors. HCT recipients have particularly complex clinical needs (Majhail et al; Bone Marrow Transplant 2012), but existing evidence on which to base models of care is weak in relation to either cost-effectiveness or quality of care. Additional complexity occurs where models of care require transition from pediatric to adult services.

Methods:We undertook an online survey of 430 centers within 48 countries registered with the EBMT as of February 2016. This included questions about service organization including transition models, access to non-hematological specialist services, and perceived barriers to improving services.

Results:74 centers (17%) responded including data from 28 countries (58%). 83% centers were JACIE accredited or else working towards it. 41 centers included pediatric patients and follow up was until age 14-25 (median 18) years. Several models of transition were cited, the most frequent being for children to go into an adult transplant or haem-oncology clinic . Although 5 models included transfer to a different town/city, the majority transitioned within the same hospital.

Late effects services were not invariably led by a single individual and sometimes occurred within the unit as part of good practise. Co-ordinated models, were most likely to be led by medical consultants (60/72 ) and the minority (only 6/72, 8%) by nurse specialists. The most frequent model of care was review within a dedicated transplant clinic that also included new patients (34/74; 46%). Management was frequently guided by a dedicated internal structured guideline (45/74; 61%). 12 centers only (16%) had a dedicated clinic for patients with chronic GVHD.

Almost two thirds of responding centers (45) had a late effects mutli-disciplinary team (MDT) and for 19 centers this applied to all ages. Composition of the MDT varied. Most frequent components were: consultant hematologist (n=36), psychologist (31), endocrinologist (28), social workers (26) and nurses (20). There was widespread access (80% or more) to endocrine, cardiology, respiratory, dermatology, gastroenterology and ophthalmology.Less than half of the specialist consultant support services available had an interest in late effects however.

Systematic screening for medical problems occurred within 2 years for more than 80% of centers for at least one parameter (e.g. endocrine), however some centers did not initiate routine surveillance until 10 years or more post SCT. Only 5 centers incorporated psychological assessment into their follow up.

The number of responding centers with well-coordinated late effects services was high. However,notably the number of centers following up the majority (>90% ) of their patients declined substantially with time.

The biggest perceived barrier to late effects services was resources: either clinical staffing or costs of investigations. Financial barriers arose from policy decision making at a National or hospital level rather than departmental level.

Conclusions:This hospital based survey has identified frequent examples of good practice including dedicated clinics, clear transition services for pediatric patients undergoing HCT and the use of MDT. Notably, however, these services only cover the very long term survivors who remain under follow up at their transplant center and systematic screening starts late (>10 years) in some models. Psychological support services were not widely available.

The study indicates some variation in models of care for addressing late effects after HCT across European centers. As many of the models described do not include all of the very long term survivors of HCT, it will be important to ensure engagement of non-transplant doctors in the community or referring hospitals. With a 17% response rate it is probable that there is a bias towards reporting details of services with a particular interest in this area. Nonetheless this survey is a useful starting point to improve practice and a basis to design studies that address outcome measures linked to model of care.