Cross-sectional study: long term follow-up care for pediatric cancer survivors in a
developing country, Turkey: current status, challenges, and future perspectives

Sonay İNCESOY ÖZDEMİR; Nurdan TAÇYILDIZ; Ali VARAN; Rejin KEBUDİ; Bülent ZÜLFİKAR; Tiraje CELKAN; Gürses ŞAHİN; Funda ÇORAPÇIOĞLU; Zuhal KESKİN YILDIRIM; Faruk Güçlü PINARLI; Nur OLGUN; Neriman SARI; Ayhan DAĞDEMİR; Derya ÖZYÖRÜK; Tuba EREN; Fatma Betül ÇAKIR; Başak AKSOY; Ceyhun BOZKURT; Elif GÜLER; Ali Aykan ÖZGÜVEN; Fatih ERBEY; Melda BERBER; Handan DİNÇASLAN; Emel ÜNAL; Mehmet KANTAR

Cross-sectional study: long term follow-up care for pediatric cancer survivors in a developing country, Turkey: current status, challenges, and future perspectives

Date

2020

Authors

Sonay İNCESOY ÖZDEMİR

Zuhal KESKİN YILDIRIM

Faruk Güçlü PINARLI

Abstract

Aim: The main purpose of this study is to determine the current status of long-term follow-up (LTFU) for childhood cancer survivors and the challenges of LTFU for pediatric cancer survivors at pediatric oncology institutions in Turkey. Material and methods: A questionnaire was e-mailed to the directors of 33 pediatric oncology centers (POCs) registered in the Turkish Pediatric Oncology Group (TPOG). Of these 33 active TPOG institutions, 21 participated in the study and returned their completed questionnaires. Results: Only 1 of the 21 participating centers had a separate LTFU clinic. The remaining centers provided LTFU care for childhood cancer survivors at the pediatric oncology outpatient clinic. Of these centers, 17 (80.9%) reported difficulty in transition from the pediatric clinic to the adult clinic, 14 (66.6%) reported insufficient care providers, and 12 (57.1%) reported insufficient time and transportation problems. As neglected late effects, 16 (76.1%) centers reported psychosocial and getty job problems and 11 (52.3%) reported sexual and cognitive problems. None of the centers had their own LTFU guidelines for their daily LTFU practice. Conclusion: This study was the first to gain an overview of the needs of POCs and the gaps in survivorship services in Turkey. The results from this study will help to develop a national health care system and national guidelines for pediatric cancer survivors.