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

Lancet Reg Health Eur. 2025 Oct 16:59:101495. doi: 10.1016/j.lanepe.2025.101495. eCollection 2025 Dec.

Authors

Femke Jansen^{1

2}, Simone Ej Eerenstein¹, Katherine J Taylor³, Cecilie D Amdal^{4

5}, Kristin Bjordal^{5

6}, Guro L Astrup⁴, Bente B Herlofson^{7

8}, Fréderic Duprez⁹, Ricardo R Gama¹⁰, Alexandre A Jacinto¹¹, Eva Hammerlid¹², Melissa Scricciolo¹³, Giuseppe Fanetti¹⁴, Orlando Guntinas-Lichius¹⁵, Johanna Inhestern^{15

16}, Tatiana Dragan¹⁷, Alexander Fabian¹⁸, Andreas Boehm¹⁹, Ulrike Wöhner¹⁹, Naomi Kiyota²⁰, Maximilian Krüger²¹, Pierluigi Bonomo²², Monica Pinto²³, Sandra Nuyts^{24

25}, Joaquim Castro Silva²⁶, Carmen Stromberger^{27

28}, Pol Specenier²⁹, Francesco Tramacere³⁰, Ayman Bushnak³¹, Pietro Perotti³², Michaela Plath³³, Alberto Paderno³⁴, Noa Stempler³⁵, Antonia Kanellopoulou³⁶, Susanne Singer³⁷, Irma M Verdonck-de Leeuw³⁸

Affiliations

¹ Department of Otolaryngology-Head and Neck Surgery, Amsterdam UMC, Location Vrije Universiteit, Amsterdam, The Netherlands.
² Cancer Center Amsterdam, Treatment and Quality of Life, Amsterdam, The Netherlands.
³ Institute of Medical Biostatistics, Epidemiology, and Informatics, University Medical Centre Mainz, Mainz, Germany.
⁴ Department of Oncology, Oslo University Hospital, Oslo, Norway.
⁵ Research Support Services, Oslo University Hospital, Oslo, Norway.
⁶ Faculty of Medicine, University of Oslo, Oslo, Norway.
⁷ Faculty of Dentistry, University of Oslo, Oslo, Norway.
⁸ Unit of Oral and Maxillofacial Surgery, Department of Otorhinolaryngology, Oslo University Hospital, Oslo, Norway.
⁹ Department of Radiotherapy-Oncology, Ghent University Hospital, Faculty of Medicine and Health Sciences-Human Structure and Repair, Ghent University, Ghent, Belgium.
¹⁰ Department of Head and Neck Surgery, Barretos Cancer Hospital, Barretos, Brazil.
¹¹ Department of Radiation Oncology, Barretos Cancer Hospital, Barretos, Brazil.
¹² Department of Otorhinolaryngology-Head and Neck Surgery, Institute of Clinical Sciences, Sahlgrenska Academy at University of Gothenburg, Sahlgrenska University Hospital, Gothenburg, Sweden.
¹³ Radiation Oncology Division, Clinical Oncology Department, Ospedale dell'Angelo, Venice, Italy.
¹⁴ Division of Radiation Oncology, Centro di Riferimento Oncologico di Aviano (CRO) IRCCS, Aviano, Italy.
¹⁵ Department of Otorhinolaryngology, Jena University Hospital, Jena, Germany.
¹⁶ Department of Otorhinolaryngology, Oberhavel Kliniken Hennigsdorf, Hennigsdorf, Germany.
¹⁷ Department of Radiation Oncology, Head and Neck Unit, Institut Jules Bordet, Université Libre de Bruxelles, Brussels, Belgium.
¹⁸ Department of Radiation Oncology, University Hospital Schleswig-Holstein, Kiel, Germany.
¹⁹ Department of Otorhinolaryngology, St. Georg Hospital, Leipzig, Germany.
²⁰ Cancer Centre, Kobe University Hospital, Kobe, Japan.
²¹ Department of Oral and Maxillofacial Surgery-Plastic Surgery, University Medical Centre Mainz, Mainz, Germany.
²² Radiation Oncology, Azienda Ospedaliero-Universitaria Careggi, Florence, Italy.
²³ Rehabilitation Medicine Unit, Istituto Nazionale Tumori-IRCCS-Fondazione G. Pascale, Naples, Italy.
²⁴ Laboratory of Experimental Radiotherapy, Department of Oncology, KU Leuven, Leuven, Belgium.
²⁵ Department of Radiation Oncology, Leuven Cancer Institute, University Hospitals Leuven, Leuven, Belgium.
²⁶ Department of Otolaryngology, Head and Neck Surgery, Instituto Português de Oncologia Francisco Gentil Do Porto, Porto, Portugal.
²⁷ Department of Radiation Oncology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin, Germany.
²⁸ Berlin Institute of Health, Berlin, Germany.
²⁹ Department of Oncology, Antwerp University Hospital, Edegem, Belgium.
³⁰ Department of Radiation Oncology, Azienda Sanitaria Locale, Brindisi, Italy.
³¹ Department of Otorhinolaryngology, University Hospital Gießenund Marburg, Giessen, Germany.
³² Department of Otorhinolaryngology-Head and Neck Surgery, "S·Chiara" Hospital, Azienda Provinciale Per I Servizi Sanitari (APSS), Trento, Italy.
³³ Department of Otorhinolaryngology, Head and Neck Surgery, University Hospital Heidelberg, Heidelberg, Germany.
³⁴ Department of Otorhinolaryngology-Head and Neck Surgery, ASST Spedali Civili of Brescia, University of Brescia, Brescia, Italy.
³⁵ Oral Medicine Unit, Sheba Medical Center, Tel Hashomer, Israel.
³⁶ Orofacial Pain Clinic, School of Dentistry, National and Kapodistrian University of Athens, Athens, Greece.
³⁷ Division of Quality of Life in Oncology, Comprehensive Cancer Center Mecklenburg-Vorpommern, University Medical Center Rostock, Germany.
³⁸ Department of Clinical, Neuro and Developmental Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.

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.

Keywords: Europe; Head and neck cancer; Healthcare system; Multinational; Supportive care; Supportive care needs.