Highlights
– In a longitudinal cohort of 403 head and neck cancer (HNC) survivors, supportive care needs (SCNs) in the health-system/information domain declined between 2 and 5 years post-treatment; physical, psychological, sexuality and HNC-specific needs remained stable.
– At 5 years, 33% had at least one moderate-to-high unmet SCN; the most common single-item unmet needs were lack of energy/tiredness (9.2%) and dry mouth/sticky mucus (8.1%).
– Demographic, clinical, psychological (notably fear of cancer recurrence), physical and lifestyle factors were associated with higher SCNs; fear of cancer recurrence (FCR) and analgesic (painkiller) use were the most consistent correlates.
Background: clinical context and unmet needs
Head and neck cancers (HNCs) and their multimodal treatments commonly leave survivors with chronic functional impairments (speech, swallowing, xerostomia), psychosocial consequences (depression, anxiety, fear of recurrence), and lifestyle challenges (nutrition, substance use). Long-term survivorship care therefore encompasses medical surveillance, symptom management, rehabilitation, psychological support and health promotion. Yet the distribution and persistence of survivors’ supportive care needs over the mid-to long-term (years 2–5) is incompletely characterized, limiting efficient allocation of resources in survivorship services.
The 2025 longitudinal cohort study by Jansen et al. probes this gap by measuring SCNs repeatedly from 2 to 5 years post-treatment in a large HNC survivor sample, relating needs to demographic, clinical, physical, psychological, social, lifestyle and cancer-related quality-of-life domains. Understanding which needs persist and which patient subgroups remain vulnerable can help clinicians prioritize screening, referrals and interventions in survivorship pathways.
Study design and methods
Jansen and colleagues conducted a prospective observational cohort study that followed 403 HNC survivors. Supportive care needs were measured annually at 2, 3, 4 and 5 years after treatment using the Supportive Care Needs Survey instruments (SCNS-SF34 and the HNC-specific module SCNS-HNC). The authors used linear mixed models to evaluate longitudinal changes in SCNs treated as continuous outcomes and to identify factors associated with SCN burden. They also calculated the point prevalence of moderate-to-high unmet SCNs (dichotomous outcome) at each time point, reporting specific unmet items at year 5.
The analyses considered a broad set of potential correlates: demographic (age, sex, education), personal characteristics (personality, coping style, self-efficacy), clinical variables (tumor stage, recurrence), physical measures (e.g., handgrip strength), psychological measures (anxiety, depression, fear of cancer recurrence), lifestyle factors (smoking, alcohol use, BMI), and cancer-related quality-of-life domains (EORTC-related functioning and symptom scales such as fatigue, pain, dry mouth, social eating, and speech problems).
Key findings
1. Trajectory of supportive care needs, 2–5 years
Overall, domains representing health system and information needs, and patient support and lifestyle needs, showed a statistically significant decline from year 2 to year 5. In contrast, needs related to physical and daily living, psychological concerns, sexuality and head-and-neck-specific functional problems (HNC-function) were relatively stable over this interval, suggesting persistent long-term unmet needs in domains tied to treatment sequelae and psychosocial adjustment.
2. Prevalence of unmet moderate-to-high needs at 5 years
At 5 years post-treatment, one-third (33%) of survivors had at least one unmet moderate-to-high supportive care need. The most frequent single-item unmet needs were lack of energy/tiredness (9.2%) and dry mouth/sticky mucus (8.1%). These item-level prevalences highlight that while many survivors adapt over time, a substantial minority continue to experience burdensome symptoms that interfere with daily life.
3. Correlates of higher supportive care need burden
Higher overall SCN scores were associated with a wide range of factors spanning demographic, personal, clinical, physical, psychological, lifestyle and cancer-related quality-of-life domains. Notable findings include:
- Demographic: male sex and higher education were associated with higher SCNs in adjusted analyses.
- Personal: certain personality traits, maladaptive coping styles and lower self-efficacy correlated with increased needs.
- Clinical: advanced tumor stage and tumor recurrence predicted higher SCNs.
- Physical: lower handgrip strength — a proxy of reduced physical reserve — was linked to greater needs.
- Psychological: anxiety, depression and particularly fear of cancer recurrence (FCR) were consistently associated with higher SCNs.
- Lifestyle: current smoking, alcohol use, and being underweight were associated with greater needs.
- Cancer-related QoL: lower global and domain-specific functioning and worse symptom scores (fatigue, constipation, financial problems, speech, social eating difficulties, dry mouth, sexual problems) and painkiller usage were associated with higher SCNs.
Among these, fear of cancer recurrence and ongoing use of analgesics (painkillers) stood out as consistent and strong correlates across models — suggesting persistent symptom burden and illness-related uncertainty are major drivers of long-term supportive care demand.
4. Clinical significance and effect sizes
The study reports consistent statistical associations between the above factors and SCN burden across multiple adjusted mixed models. While the exact model coefficients and confidence intervals are detailed in the original paper, the practical signal is clear: multidimensional sequelae — physical, psychological and functional — exert durable effects on survivors’ perceived needs even several years after treatment.
Expert commentary: interpretation, mechanistic plausibility and implications
This longitudinal evidence provides several actionable insights for clinicians and survivorship program designers:
- Persistence of symptom- and function-related needs: The stability of physical and HNC-function needs over years 2–5 is consistent with the known chronicity of treatment-related toxicities such as xerostomia, dysphagia and fatigue. These sequelae may not spontaneously remit and often require targeted rehabilitation (swallowing therapy, salivary-sparing strategies, exercise-based fatigue interventions).
- Fear of cancer recurrence as a central target: FCR’s strong association with SCNs suggests that psychological screening and interventions (cognitive-behavioral therapy, FCR-specific interventions, psychoeducation, and structured follow-up plans) should be core components of long-term survivorship care.
- Pain and symptom management: The link between analgesic use and higher needs likely reflects persistent pain or poorly controlled symptoms. Comprehensive pain assessment, specialist referral (pain clinic), and multimodal management should be prioritized.
- Health system and information needs decline but remain relevant: The reduction over time may reflect accumulating patient knowledge and experience, but a subset of survivors will continue to need clear information and navigation support — especially those with recurrence or complex late effects.
- Risk stratification for targeted follow-up: Demographic, clinical and personal characteristics that predict higher needs can inform a risk-stratified survivorship model where higher-risk patients receive more intensive, multidisciplinary follow-up.
From a mechanistic viewpoint, the persistence of SCNs reflects the interaction of irreversible treatment-related tissue damage (e.g., salivary gland irradiation causing xerostomia), functional impairment (reduced swallowing strength), and psychosocial sequelae (FCR, depression) that feed on each other. For example, persistent xerostomia can worsen social eating and speech, leading to isolation and increased psychological distress, which in turn amplifies reported needs.
Limitations and generalizability
Key limitations merit consideration when translating these findings:
- Observational design — causality cannot be assumed between the identified correlates and higher SCNs.
- Self-reported instruments and possible response bias — survivors with the greatest needs may be more likely to remain engaged or conversely to drop out.
- Setting and population specifics — the cohort was derived from specialized centers; results may differ in other health systems or in populations with different sociodemographic profiles.
- Measurement instruments — while SCNS instruments are widely used, differences in item wording or cultural adaptation can affect prevalence estimates.
Nevertheless, the study’s longitudinal design, large sample and comprehensive modelling strengthen the internal validity of the observed trajectories and associations.
Clinical and policy implications
For clinicians and survivorship program leaders, practical steps include:
- Implement routine, repeated screening for SCNs (including FCR and symptom burden) across long-term follow-up visits, not just in the first year after treatment.
- Embed brief validated FCR and symptom measures into follow-up workflows to identify patients needing psychological or palliative input.
- Develop pathways for rapid referral to speech and swallow rehabilitation, salivary management (pilocarpine, saliva substitutes, intensity-modulated radiotherapy planning earlier), fatigue programs (exercise and behavioral interventions), and pain clinics.
- Adopt a risk-stratified survivorship model that personalizes follow-up intensity according to predictors identified (advanced stage, recurrence, low physical reserve, lifestyle risks, psychosocial vulnerability).
- Address modifiable lifestyle factors — integrate smoking cessation, alcohol counseling and nutritional support into survivorship care.
Conclusion
The Jansen et al. longitudinal cohort demonstrates that although information and system-related supportive care needs decline between 2 and 5 years after treatment for head and neck cancer, approximately one-third of survivors retain at least one moderate-to-high unmet need at five years. Fatigue and xerostomia were common persistent problems, and fear of cancer recurrence together with ongoing analgesic use emerged as consistent, strong correlates of greater need. Survivorship care for HNC should therefore combine ongoing symptom-focused clinical interventions, targeted rehabilitation, and psychological care—particularly FCR interventions—within a risk-stratified follow-up framework.
Funding and trial registration
The original article lists funding and disclosures; please consult the publication for full details of funding sources and ethical approvals. No clinicaltrials.gov registration is noted in the citation provided.
References
1. Jansen F, Molenaar D, Zarsat Ö, et al. Supportive Care Needs From Mid-to Long-Term Follow-Up Among Head and Neck Cancer Survivors: A Longitudinal Cohort Study. Psychooncology. 2025 Sep;34(9):e70276. doi: 10.1002/pon.70276. PMID: 40903428; PMCID: PMC12408419.
2. Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organisation for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993 Mar 3;85(5):365-76.
3. Simard S, Savard J. Fear of Cancer Recurrence Inventory: development and validation of a multidimensional measure of fear of cancer recurrence. Support Care Cancer. 2009 Sep;17(3):241-51. doi:10.1007/s00520-008-0414-6.
For clinical implementation, readers are encouraged to review guideline statements and locally applicable survivorship care plans.