Unmet supportive care needs among head and neck cancer survivors beyond 5 years after diagnosis: a multinational cohort study

Femke Jansen; Simone EJ. Eerenstein; Katherine J. Taylor; Cecilie D. Amdal; Kristin Bjordal; Guro L. Astrup; Bente B. Herlofson; Fréderic Duprez; Ricardo R. Gama; Alexandre A. Jacinto; Eva Hammerlid; Melissa Scricciolo; Giuseppe Fanetti; Orlando Guntinas-Lichius; Johanna Inhestern; Tatiana Dragan; Alexander Fabian; Andreas Boehm; Ulrike Wöhner; Naomi Kiyota; Maximilian Krüger; Pierluigi Bonomo; Monica Pinto; Sandra Nuyts; Joaquim Castro Silva; Carmen Stromberger; Pol Specenier; Francesco Tramacere; Ayman Bushnak; Pietro Perotti; Michaela Plath; Alberto Paderno; Noa Stempler; Antonia Kanellopoulou; Susanne Singer; Irma M. Verdonck-de Leeuw

doi:10.1016/j.lanepe.2025.101495

Unmet supportive care needs among head and neck cancer survivors beyond 5 years after diagnosis: a multinational cohort study

Femke Jansen^*
, Simone EJ. Eerenstein
, Katherine J. Taylor
, Cecilie D. Amdal
, Kristin Bjordal
, Guro L. Astrup
, Bente B. Herlofson
, Fréderic Duprez
, Ricardo R. Gama
, Alexandre A. Jacinto
, Eva Hammerlid
, Melissa Scricciolo
, Giuseppe Fanetti
, Orlando Guntinas-Lichius
, Johanna Inhestern
, Tatiana Dragan
, Alexander Fabian
, Andreas Boehm
, Ulrike Wöhner
, Naomi Kiyota

Maximilian Krüger, Pierluigi Bonomo, Monica Pinto, Sandra Nuyts, Joaquim Castro Silva, Carmen Stromberger, Pol Specenier, Francesco Tramacere, Ayman Bushnak, Pietro Perotti, Michaela Plath, Alberto Paderno, Noa Stempler, Antonia Kanellopoulou, Susanne Singer, Irma M. Verdonck-de Leeuw

^*Corresponding author for this work

Research output: Contribution to Journal › Article › Academic › peer-review

Abstract

Background: This study investigates unmet supportive care needs (SCNs) among head and neck cancer (HNC) survivors beyond 5 years after diagnosis and examines the association with sociodemographic, clinical and lifestyle factors, and differences in European and non-European regions and healthcare systems.

Methods: In this cross-sectional study, 1097 HNC survivors from 11 countries completed the Short-Form Supportive Care Needs Survey (SCNS-SF34) and HNC-specific module (SCNS-HNC), encompassing physical and daily living, psychological, sexuality, HNC-specific and lifestyle domains. Scores were dichotomized per domain and across domains into moderate-high unmet SCNs (yes/no). Logistic regression analyses were used to investigate associated factors.

Findings: Half (50%, proportion 100/200) of HNC survivors had unmet SCNs (overall), especially unmet HNC-specific (40%, 40/100), psychological (25%, 25/100), and physical and daily living (22%, 22/100) needs. Personal (women, lower age), lifestyle (smoking, alcohol consumption) and clinical factors (advanced tumor stage, second primary tumor, multimodality treatment [versus single surgery], poor Karnofsky performance score and comorbidities) were associated with unmet SCNs. Physical and daily living, HNC-specific and overall unmet SCNs were more likely among survivors from Northern Europe compared to Southern and Western Europe. Unmet psychological, sexuality and lifestyle needs were more likely among non-European countries. All unmet SCNs (except psychological) were more likely among survivors with a national health system compared to a social and/or etatist health insurance system.

Interpretation: Half of HNC survivors have unmet SCNs. Insight into healthcare utilization may provide insights how to improve care.

Funding: European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group.

Original language	English
Article number	101495
Pages (from-to)	1-11
Number of pages	11
Journal	The Lancet Regional Health - Europe
Volume	59
Early online date	16 Oct 2025
DOIs	https://doi.org/10.1016/j.lanepe.2025.101495
Publication status	Published - Dec 2025

Funding

The study was funded by The European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group (grant number 1629). The EORTC Quality of Life Group business model involves charges for commercial companies using EORTC instruments. The funder had no role in study design, data collection, data analysis, data interpretation, or writing of the report. The corresponding author had full access to all of the data and the final responsibility to submit for publication. The study was funded by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life group , Grant/Award Number: EORTC1629 .

Funders	Funder number
European Organisation for Research and Treatment of Cancer	1629, EORTC1629

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Jansen, F., Eerenstein, S. EJ., Taylor, K. J., Amdal, C. D., Bjordal, K., Astrup, G. L., Herlofson, B. B., Duprez, F., Gama, R. R., Jacinto, A. A., Hammerlid, E., Scricciolo, M., Fanetti, G., Guntinas-Lichius, O., Inhestern, J., Dragan, T., Fabian, A., Boehm, A., Wöhner, U., ... Verdonck-de Leeuw, I. M. (2025). Unmet supportive care needs among head and neck cancer survivors beyond 5 years after diagnosis: a multinational cohort study. The Lancet Regional Health - Europe, 59, 1-11. Article 101495. https://doi.org/10.1016/j.lanepe.2025.101495

@article{7abb2631dfae4217a5a93e6b6aca7f9f,

title = "Unmet supportive care needs among head and neck cancer survivors beyond 5 years after diagnosis: a multinational cohort study",

abstract = "Background: This study investigates unmet supportive care needs (SCNs) among head and neck cancer (HNC) survivors beyond 5 years after diagnosis and examines the association with sociodemographic, clinical and lifestyle factors, and differences in European and non-European regions and healthcare systems. Methods: In this cross-sectional study, 1097 HNC survivors from 11 countries completed the Short-Form Supportive Care Needs Survey (SCNS-SF34) and HNC-specific module (SCNS-HNC), encompassing physical and daily living, psychological, sexuality, HNC-specific and lifestyle domains. Scores were dichotomized per domain and across domains into moderate-high unmet SCNs (yes/no). Logistic regression analyses were used to investigate associated factors. Findings: Half (50\%, proportion 100/200) of HNC survivors had unmet SCNs (overall), especially unmet HNC-specific (40\%, 40/100), psychological (25\%, 25/100), and physical and daily living (22\%, 22/100) needs. Personal (women, lower age), lifestyle (smoking, alcohol consumption) and clinical factors (advanced tumor stage, second primary tumor, multimodality treatment [versus single surgery], poor Karnofsky performance score and comorbidities) were associated with unmet SCNs. Physical and daily living, HNC-specific and overall unmet SCNs were more likely among survivors from Northern Europe compared to Southern and Western Europe. Unmet psychological, sexuality and lifestyle needs were more likely among non-European countries. All unmet SCNs (except psychological) were more likely among survivors with a national health system compared to a social and/or etatist health insurance system. Interpretation: Half of HNC survivors have unmet SCNs. Insight into healthcare utilization may provide insights how to improve care. Funding: European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group.",

author = "Femke Jansen and Eerenstein, \{Simone EJ.\} and Taylor, \{Katherine J.\} and Amdal, \{Cecilie D.\} and Kristin Bjordal and Astrup, \{Guro L.\} and Herlofson, \{Bente B.\} and Fr{\'e}deric Duprez and Gama, \{Ricardo R.\} and Jacinto, \{Alexandre A.\} and Eva Hammerlid and Melissa Scricciolo and Giuseppe Fanetti and Orlando Guntinas-Lichius and Johanna Inhestern and Tatiana Dragan and Alexander Fabian and Andreas Boehm and Ulrike W{\"o}hner and Naomi Kiyota and Maximilian Kr{\"u}ger and Pierluigi Bonomo and Monica Pinto and Sandra Nuyts and Silva, \{Joaquim Castro\} and Carmen Stromberger and Pol Specenier and Francesco Tramacere and Ayman Bushnak and Pietro Perotti and Michaela Plath and Alberto Paderno and Noa Stempler and Antonia Kanellopoulou and Susanne Singer and \{Verdonck-de Leeuw\}, \{Irma M.\}",

year = "2025",

month = dec,

doi = "10.1016/j.lanepe.2025.101495",

language = "English",

volume = "59",

pages = "1--11",

journal = "The Lancet Regional Health - Europe",

issn = "2666-7762",

publisher = "Elsevier Ltd",

}

Jansen, F, Eerenstein, SEJ, Taylor, KJ, Amdal, CD, Bjordal, K, Astrup, GL, Herlofson, BB, Duprez, F, Gama, RR, Jacinto, AA, Hammerlid, E, Scricciolo, M, Fanetti, G, Guntinas-Lichius, O, Inhestern, J, Dragan, T, Fabian, A, Boehm, A, Wöhner, U, Kiyota, N, Krüger, M, Bonomo, P, Pinto, M, Nuyts, S, Silva, JC, Stromberger, C, Specenier, P, Tramacere, F, Bushnak, A, Perotti, P, Plath, M, Paderno, A, Stempler, N, Kanellopoulou, A, Singer, S & Verdonck-de Leeuw, IM 2025, 'Unmet supportive care needs among head and neck cancer survivors beyond 5 years after diagnosis: a multinational cohort study', The Lancet Regional Health - Europe, vol. 59, 101495, pp. 1-11. https://doi.org/10.1016/j.lanepe.2025.101495

TY - JOUR

T1 - Unmet supportive care needs among head and neck cancer survivors beyond 5 years after diagnosis

T2 - a multinational cohort study

AU - Jansen, Femke

AU - Eerenstein, Simone EJ.

AU - Taylor, Katherine J.

AU - Amdal, Cecilie D.

AU - Bjordal, Kristin

AU - Astrup, Guro L.

AU - Herlofson, Bente B.

AU - Duprez, Fréderic

AU - Gama, Ricardo R.

AU - Jacinto, Alexandre A.

AU - Hammerlid, Eva

AU - Scricciolo, Melissa

AU - Fanetti, Giuseppe

AU - Guntinas-Lichius, Orlando

AU - Inhestern, Johanna

AU - Dragan, Tatiana

AU - Fabian, Alexander

AU - Boehm, Andreas

AU - Wöhner, Ulrike

AU - Kiyota, Naomi

AU - Krüger, Maximilian

AU - Bonomo, Pierluigi

AU - Pinto, Monica

AU - Nuyts, Sandra

AU - Silva, Joaquim Castro

AU - Stromberger, Carmen

AU - Specenier, Pol

AU - Tramacere, Francesco

AU - Bushnak, Ayman

AU - Perotti, Pietro

AU - Plath, Michaela

AU - Paderno, Alberto

AU - Stempler, Noa

AU - Kanellopoulou, Antonia

AU - Singer, Susanne

AU - Verdonck-de Leeuw, Irma M.

PY - 2025/12

Y1 - 2025/12

N2 - Background: This study investigates unmet supportive care needs (SCNs) among head and neck cancer (HNC) survivors beyond 5 years after diagnosis and examines the association with sociodemographic, clinical and lifestyle factors, and differences in European and non-European regions and healthcare systems. Methods: In this cross-sectional study, 1097 HNC survivors from 11 countries completed the Short-Form Supportive Care Needs Survey (SCNS-SF34) and HNC-specific module (SCNS-HNC), encompassing physical and daily living, psychological, sexuality, HNC-specific and lifestyle domains. Scores were dichotomized per domain and across domains into moderate-high unmet SCNs (yes/no). Logistic regression analyses were used to investigate associated factors. Findings: Half (50%, proportion 100/200) of HNC survivors had unmet SCNs (overall), especially unmet HNC-specific (40%, 40/100), psychological (25%, 25/100), and physical and daily living (22%, 22/100) needs. Personal (women, lower age), lifestyle (smoking, alcohol consumption) and clinical factors (advanced tumor stage, second primary tumor, multimodality treatment [versus single surgery], poor Karnofsky performance score and comorbidities) were associated with unmet SCNs. Physical and daily living, HNC-specific and overall unmet SCNs were more likely among survivors from Northern Europe compared to Southern and Western Europe. Unmet psychological, sexuality and lifestyle needs were more likely among non-European countries. All unmet SCNs (except psychological) were more likely among survivors with a national health system compared to a social and/or etatist health insurance system. Interpretation: Half of HNC survivors have unmet SCNs. Insight into healthcare utilization may provide insights how to improve care. Funding: European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group.

AB - Background: This study investigates unmet supportive care needs (SCNs) among head and neck cancer (HNC) survivors beyond 5 years after diagnosis and examines the association with sociodemographic, clinical and lifestyle factors, and differences in European and non-European regions and healthcare systems. Methods: In this cross-sectional study, 1097 HNC survivors from 11 countries completed the Short-Form Supportive Care Needs Survey (SCNS-SF34) and HNC-specific module (SCNS-HNC), encompassing physical and daily living, psychological, sexuality, HNC-specific and lifestyle domains. Scores were dichotomized per domain and across domains into moderate-high unmet SCNs (yes/no). Logistic regression analyses were used to investigate associated factors. Findings: Half (50%, proportion 100/200) of HNC survivors had unmet SCNs (overall), especially unmet HNC-specific (40%, 40/100), psychological (25%, 25/100), and physical and daily living (22%, 22/100) needs. Personal (women, lower age), lifestyle (smoking, alcohol consumption) and clinical factors (advanced tumor stage, second primary tumor, multimodality treatment [versus single surgery], poor Karnofsky performance score and comorbidities) were associated with unmet SCNs. Physical and daily living, HNC-specific and overall unmet SCNs were more likely among survivors from Northern Europe compared to Southern and Western Europe. Unmet psychological, sexuality and lifestyle needs were more likely among non-European countries. All unmet SCNs (except psychological) were more likely among survivors with a national health system compared to a social and/or etatist health insurance system. Interpretation: Half of HNC survivors have unmet SCNs. Insight into healthcare utilization may provide insights how to improve care. Funding: European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group.

UR - https://www.scopus.com/pages/publications/105018943565

U2 - 10.1016/j.lanepe.2025.101495

DO - 10.1016/j.lanepe.2025.101495

M3 - Article

SN - 2666-7762

VL - 59

SP - 1

EP - 11

JO - The Lancet Regional Health - Europe

JF - The Lancet Regional Health - Europe

M1 - 101495

ER -

Unmet supportive care needs among head and neck cancer survivors beyond 5 years after diagnosis: a multinational cohort study

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Funding

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