Half of Long‑Term Head and Neck Cancer Survivors Report Unmet Supportive Care Needs — A Multinational Cohort Highlights Clinical and System Drivers

Half of Long‑Term Head and Neck Cancer Survivors Report Unmet Supportive Care Needs — A Multinational Cohort Highlights Clinical and System Drivers

Highlight

– In a multinational cross‑sectional sample of 1,097 head and neck cancer survivors more than 5 years from diagnosis, half reported at least one moderate‑to‑high unmet supportive care need (SCN).

– HNC‑specific (40%), psychological (25%) and physical and daily living (22%) domains were most affected.

– Unmet needs clustered in women, younger survivors, those with advanced disease, multimodality treatment, second primaries, impaired performance, comorbidity, and lifestyle risk factors; prevalence varied by geographic region and health‑system type.

Background

Improvements in detection and multimodal treatment have increased survival for many patients with head and neck cancer (HNC). As survival extends, attention turns from disease control to survivorship outcomes: functional sequelae (speech, swallowing, appearance), psychosocial adjustment, sexual function, and lifestyle factors that influence quality of life (QoL) and secondary cancer risk. Unmet supportive care needs (SCNs) reflect areas where survivors require but do not receive adequate services or information. Identifying the prevalence and determinants of unmet SCNs among long‑term survivors is essential to prioritize services, design targeted interventions, and shape survivorship policy.

Study design

Population and setting

This cross‑sectional analysis pooled data from 1,097 head and neck cancer survivors across 11 countries. All participants were at least 5 years post‑diagnosis. The multinational design included European and non‑European sites and healthcare systems that the authors categorized by predominant funding model.

Measures

Supportive care needs were assessed using the Short‑Form Supportive Care Needs Survey (SCNS‑SF34) and a head and neck cancer‑specific module (SCNS‑HNC). The combined instruments cover physical and daily living, psychological, sexuality, HNC‑specific and lifestyle domains. Domain scores were dichotomized (moderate‑to‑high unmet need: yes/no). The primary endpoint was presence of at least one moderate‑to‑high unmet SCN (overall unmet need).

Analysis

Logistic regression models were used to identify sociodemographic, clinical and lifestyle factors associated with domain‑specific and overall unmet SCNs. Analyses also compared prevalence across regions (Northern, Southern, Western Europe, and non‑European) and by health‑system type (national health system vs social/etatist insurance systems).

Key findings

Prevalence of unmet needs

Overall, one half of the sample reported at least one moderate‑to‑high unmet supportive care need. Domain‑level prevalence (reported in the study) included: HNC‑specific unmet needs in 40% of survivors, psychological needs in 25%, and physical and daily living needs in 22%. Sexuality and lifestyle domains were also reported but with lower overall prevalence than the top three domains.

Patient and disease correlates

Several consistent correlates of unmet SCNs emerged:

  • Personal characteristics: Female sex and younger age were associated with higher likelihood of reporting unmet needs. This aligns with prior survivorship literature showing that younger survivors frequently report greater informational, psychosocial and functional concerns.
  • Lifestyle factors: Current smoking and alcohol consumption were associated with higher unmet needs, suggesting that ongoing risk behaviors either reflect gaps in counseling/support or co‑occur with greater symptom burden and psychosocial distress.
  • Clinical factors: Markers of greater disease severity or treatment intensity — advanced tumor stage, second primary tumours, and multimodality treatment (versus single surgery) — were associated with greater unmet needs. Poorer functional status (lower Karnofsky performance score) and higher comorbidity burden also predicted unmet needs.

Geographic and health‑system variation

The study identified notable regional and system‑level differences:

  • Survivors from Northern Europe had higher odds of reporting unmet physical and daily living, HNC‑specific and overall SCNs than those from Southern and Western Europe.
  • Psychological, sexuality and lifestyle unmet needs were more frequently reported among survivors in non‑European countries compared with European regions.
  • Compared with social/etatist health insurance systems, survivors in countries with national health systems were more likely to report all types of unmet SCNs except psychological needs.

These patterns highlight that prevalence of unmet needs reflects an interaction between patient factors, late effects of disease and treatment, and health‑system context (access, organization of survivorship services, cultural factors and expectations).

Strength of evidence and statistical considerations

The study used a validated instrument (SCNS‑SF34 and HNC module) and multivariable logistic regression to adjust for confounders. The multinational sample increases external validity, but heterogeneity across centres and potential selection bias (survey response, survivorship clinic attendance) merit caution in interpreting prevalence estimates as universally generalizable.

Expert commentary

This study provides robust, clinically relevant data that half of long‑term HNC survivors continue to experience unmet supportive care needs—often in domains directly linked to the disease’s unique functional sequelae. Several implications follow.

Clinical implications

First, routine long‑term screening for supportive care needs should be integrated into follow‑up pathways well beyond the 5‑year mark. Instruments such as the SCNS‑SF34 can be used to screen systematically, but local adaptation (timing, language, referral pathways) is essential.

Second, the clustering of unmet needs in younger patients, women, those with multimodality treatment, second primaries or poor performance status identifies high‑risk groups who should be prioritized for multidisciplinary survivorship care. Interventions include targeted rehabilitation (speech and swallow therapy, nutritional support), psychosocial therapy (CBT, peer support), sexual health counselling, and structured lifestyle interventions (smoking cessation, alcohol reduction).

Health‑system and policy considerations

The observed regional and system differences suggest that organizational factors — availability of rehabilitation services, integration of oncology, ENT, speech/swallow services, primary care coordination, and survivorship programs — materially influence survivor experience. Higher unmet needs in some national health systems may reflect gaps in service provision despite universal coverage, or different expectations and reporting behaviour among patients. Health planners should audit service availability for long‑term functional rehabilitation and psycho‑social support, and monitor outcomes across regions.

Limitations and research gaps

Limitations of the study include its cross‑sectional design (which limits causal inference), reliance on self‑report (subject to recall and reporting biases), and potential heterogeneity in recruitment across countries that could influence observed regional differences. The dichotomization of domain scores simplifies interpretation but may obscure gradations of need.

Key research priorities include longitudinal studies to track unmet needs over time and evaluate whether and how needs resolve or evolve; implementation studies testing models of survivorship care (integrated multidisciplinary clinics, stepped care, primary care‑led survivorship with specialist access); and trials of targeted interventions for high‑risk groups (e.g., structured swallow rehabilitation, integrated smoking/alcohol cessation with psychosocial support).

Practical recommendations for clinicians and services

  • Incorporate routine needs screening into long‑term follow‑up (beyond 5 years), using validated tools and defined referral pathways.
  • Prioritize multidisciplinary assessments for survivors treated with multimodality therapy and those with persistent functional impairment (low Karnofsky score) or comorbidity.
  • Address lifestyle risks proactively with evidence‑based cessation and alcohol reduction programs integrated into survivorship clinics.
  • Ensure access to specialty rehabilitation (speech and language pathology, dietetics, lymphedema therapy) and psychosocial services, and measure outcomes to guide resource allocation.
  • Health systems should evaluate geographic disparities and examine whether gaps are due to service availability, referral processes, cultural differences, or patient expectations.

Conclusion

This multinational cohort study demonstrates that substantial unmet supportive care needs persist in a significant proportion of head and neck cancer survivors more than 5 years after diagnosis. The findings reinforce the need for long‑term, needs‑based survivorship care that combines symptom management, rehabilitation, psychosocial support and lifestyle interventions. Health‑system structure, regional factors and patient characteristics shape the landscape of unmet needs; addressing these will require coordinated clinical, organizational, and policy responses.

Funding and clinicaltrials.gov

Funding: European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group, as reported in the primary publication. No clinicaltrials.gov identifier was provided for this cross‑sectional analysis in the source citation.

References

1. Jansen F, Eerenstein SE, Taylor KJ, et al. 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. PMID: 41142659; PMCID: PMC12553064.

2. Sung H, Ferlay J, Siegel RL, et al. Global Cancer Statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2021;71(3):209–249.

3. National Comprehensive Cancer Network (NCCN). NCCN Clinical Practice Guidelines in Oncology: Survivorship. Version 2.2024. (Accessed 2025).

4. Institute of Medicine (US) and National Research Council (US) National Cancer Policy Board. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington (DC): National Academies Press (US); 2006.

Acknowledgements

The author acknowledges the multinational study investigators and survivors who contributed data to the referenced study, and the EORTC Quality of Life Group for funding the primary work.

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