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

Sophia K Smith ,
Lonneke V van de Poll-Franse ,
Eline M J Lammers ,
Josée M Zijlstra ,
Michael Schaapveld ,
Cécile P M Janus ,
Karin M Aarsman ,
Liane C J Te Boome ,
Maaike M G Schippers ,
Rinske S Boersma ,
Saskia E Rademakers ,
Wouter J Plattel ,
Lara H Böhmer ,
Marieke van den Berg ,
Adriaantje C Kroeze ,
Leonie S Strobbe ,
Wendy Deenik ,
Heleen S de Lil ,
Berthe M P Aleman ,
Flora E van Leeuwen ,
Annelies Nijdam

Abstract

METHODS

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.

CONCLUSIONS

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

RESULTS

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.

IMPLICATIONS FOR CANCER SURVIVORS

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.

PURPOSE

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.

More about this publication

Journal of cancer survivorship : research and practice

Publication date 15-07-2026

Full text links

Publisher website (DOI) 10.1007/s11764-026-02079-1
Europe PubMed Central 42455229
Pubmed 42455229

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