Knowledge gaps among adult Hodgkin lymphoma survivors: implications for risk‑based care

Survivors of Hodgkin lymphoma (HL) face lifelong risks of treatment-related late adverse effects, yet many lack adequate knowledge of these risks. This study examined sociodemographic, clinical, and care-related correlates of survivorship knowledge among adult HL survivors engaged in a national, risk-based survivorship program.

Adult HL survivors participating in the Dutch INSIGHT study within the BETER survivorship-care infrastructure completed a multi‑domain survivorship knowledge questionnaire assessing awareness of endocrine, cardiovascular, oncologic, infectious, and symptom-related late effects. A 12-item sex-comparable knowledge index was constructed and scored using partial-credit rules. Missing data were handled using multiple imputation. Multiple linear regression models were used to estimate independent associations between sociodemographic characteristics, treatment exposures, survivorship-care utilization, and knowledge scores.

Among 370 survivors (53% female; median age at survey 55.2 years), survivorship knowledge was low overall (median 38.9% correct) and heterogeneous. Female sex and younger age demonstrated the largest independent associations with survivorship knowledge, compared with treatment-related factors. Chemotherapy exposure, splenic radiotherapy/splenectomy, and a greater number of survivorship-care visits were also associated with higher knowledge. Numeric risk-estimation items demonstrated lower correct response rates than categorical knowledge items.

Survivorship knowledge among adult HL survivors remains suboptimal and varied primarily by demographic characteristics rather than clinical risk alone.

Targeted, demographically tailored educational strategies may be warranted to support equitable engagement in long-term, risk-based survivorship care, particularly for male and older HL survivors.