Current Status and Needs of Long-Term Follow-Up Clinics for Hematopoietic Cell Transplantation Survivors: Results of a Nationwide Survey in Japan

Saiko Kurosawa, Ayako Mori, Mayumi Tsukagoshi, Yasushi Onishi, Chikako Ohwada, Takehiko Mori, Hideki Goto, Yuki Asano-Mori, Yuichiro Nawa, Masayuki Hino, Tomoko Fukuchi, Yasuo Mori, Reiko Yamahana, Yoshihiro Inamoto, Takahiro Fukuda

Research output: Contribution to journalArticle

Abstract

With increasing focus on the importance of long-term survivorship care after allogeneic hematopoietic cell transplantation (allo-HCT), more institutions have been establishing long-term follow-up (LTFU) clinics. Currently, however, with varying volumes of HCT procedures and resources, there is no standardized operation of these clinics in HCT centers. We conducted a nationwide questionnaire survey to characterize the current operation of LTFU clinics in Japan. We targeted 271 HCT centers (189 adult and 82 pediatric) that registered allo-HCT cases to the national transplant registry database. The response rate was 69%, and 117 of the 188 participating centers (62%) had an established LTFU clinic. The most frequent reason cited for not operating an LTFU clinic was a “lack of human resources,” especially nurses. Most centers with an LTFU clinic targeted allo-HCT recipients, although autologous HCT survivors were followed up at 18% of adult centers and 48% of pediatric centers. Ninety-two percent of centers did not terminate LTFU at a specific time point, and 56% recommended that patients visit the LTFU clinic beyond 5 years after HCT. Fifteen of 20 pediatric centers indicated that they did not routinely refer survivors who underwent HCT at a young age to an adult HCT center for their adulthood LTFU. We found that staffing and standard practices varied widely among centers, and that most centers continued to see long-term HCT survivors at their own outpatient clinics. The development of common LTFU tools may help standardize LTFU practices and facilitate efficient transitions.

Original languageEnglish
Pages (from-to)949-955
Number of pages7
JournalBiology of Blood and Marrow Transplantation
Volume26
Issue number5
DOIs
Publication statusPublished - 2020 May

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Keywords

  • Allogeneic hematopoietic cell transplantation
  • Late effects
  • Long-term follow-up
  • Survivorship
  • Transition

ASJC Scopus subject areas

  • Hematology
  • Transplantation

Cite this

Kurosawa, S., Mori, A., Tsukagoshi, M., Onishi, Y., Ohwada, C., Mori, T., Goto, H., Asano-Mori, Y., Nawa, Y., Hino, M., Fukuchi, T., Mori, Y., Yamahana, R., Inamoto, Y., & Fukuda, T. (2020). Current Status and Needs of Long-Term Follow-Up Clinics for Hematopoietic Cell Transplantation Survivors: Results of a Nationwide Survey in Japan. Biology of Blood and Marrow Transplantation, 26(5), 949-955. https://doi.org/10.1016/j.bbmt.2020.01.008