Information and support needs of childhood, adolescent, and young adult cancer survivors (CAYACS) across europe and associations with patient activation and health-related quality of life: Results from the e-QuoL project

Abstract

Purpose

This study assessed the prevalence and type of information and support needs among European childhood, adolescent, and young adult cancer survivors (CAYACS), their socio-demographic and clinical predictors, and associations with patient activation and health-related quality of life (HRQoL).

Methods

The e-QuoL Needs Study is a cross-sectional survey conducted in 15 European countries. Adult CAYACS (≥18 years, diagnosed before age 25 years) completed the modified Childhood Cancer Survivor Study–Needs Assessment Questionnaire (CCSS-NAQ), Patient Activation Measure® (PAM®), and PROMIS Global Health scales (HRQoL). Logistic and linear regression models were used to examine associations between socio-demographic and clinical characteristics, patient activation, and HRQoL.

Results

Overall, 571 CAYACS who completed ≥ 50% of the items in at least one CCSS-NAQ domain were included (71% female; 75% in the age group 18–35 years; 47% diagnosed >10 years ago). In all domains, except spirituality, most participants (62–90%) reported at least one need, with the highest prevalence found for cancer-related health information (90%), psycho-emotional consequences (87%), and health system concerns (84%). Females, survivors residing in Eastern Europe, and those with neurocognitive late effects were most likely to report needs (p < 0.05). Reporting needs was associated with lower patient activation and poorer mental and physical HRQoL.

Conclusions

Information and support needs remain highly prevalent among European CAYACS, even long after diagnosis. Routine assessment of individual needs and targeted information strategies tailored to survivor groups identified as having higher needs may help reduce regional inequities, improve patient activation, and optimize HRQoL.