Predictive factors of long‐term follow‐up attendance in very long‐term childhood cancer survivors
Authors: Dumas Agnes , Milcent Karen , Bougas Nicolas , Bejarano‐Quisoboni Daniel , El Fayech Chiraz , Charreire Hélène , Oberlin Odile , Patte Catherine , Allard Julie , Thebault Eric , Boumaraf Amel , Belhout Amel , Giao Vu‐Bezin , Souchard Vincent , Jackson Angela , Allodji Rodrigue , Valteau‐Couanet Dominique , Dufour Christelle , Vassal Gilles , Haddy Nadia , De Vathaire Florent , Fresneau Brice 
Published: July 2023

Background

Long‐term follow‐up (LTFU) clinics have been developed but only some childhood cancer survivors (CCS) attend long‐term follow‐up (LTFU).

Objective

To identify factors that influence LTFU attendance.

Methods

Five‐year CCS treated for a solid tumor or lymphoma in Gustave Roussy before 2000, included in the FCCSS cohort (French Childhood Cancer Survivor Study), aged >18 years and alive at the date of the LTFU Clinic opening (January 2012) were invited to a LTFU visit. Factors associated with attendance at the LTFU clinic between 2012 and 2020 were estimated using logistic regression analyses. Analyses included different types of factors: clinical (tumor characteristics, cancer treatments, late effects), medical (medical expenses were used as a proxy of survivor’s health status), social (deprivation index based on census‐tract data relating to income, educational level, proportion of blue‐collar workers, and unemployed people living in the area of residence), and spatial (distance to the LTFU clinic).

Results

Among 2341 CCS contacted (55% males, mean age at study, 45 years; SD ± 10 years; mean age at diagnosis, 6 years; SD ± 5 years), 779 (33%) attended at least one LTFU visit. Initial cancer‐related factors associated with LTFU visit attendance were: treatment with both radiotherapy and chemotherapy (odds ratio [OR], 4.02; 95% CI, 2.11–7.70), bone sarcoma (OR, 2.43; 95% CI, 1.56–3.78), central nervous system primitive tumor (OR, 1.65; 95% CI, 1.02–2.67), and autologous hematopoietic cell transplant (OR, 2.07; 95% CI, 1.34‐3.20). Late effects (OR, 1.70; 95% CI, 1.31–2.20), highest medical expenses (OR, 1.65; 95% CI, 1.22–2.22), living in the most advantaged area (OR vs. the most deprived area = 1.60; 95% CI, 1.15–2.22), and shorter distance from LTFU care center (<12 miles) also increased attendance.

Conclusions

Patients who are apparently healthy as well as socially disadvantaged and living far away from the center are less likely to attend LTFU care.

Plain Language Summary

Among 2341 adult childhood cancer survivors contacted between 2012 and 2020, 33% attended at least one long‐term follow‐up visit.

Clinical factors related to attendance were multimodal treatment of first cancer (combining chemotherapy and radiotherapy), stem cell transplant, type of diagnosis (bone tumor and central nervous system primitive tumor), late effects (at least one disease among second malignancy, heart disease, or stroke), and highest medical expenses.

In addition, the study identified social and spatial inequalities related to attendance, with independent negative effects of distance and social deprivation on attendance, even though the medical costs related to the long‐term follow‐up examinations are covered by the French social security system.