Survival after head and neck cancer (HNC) has improved, creating a growing population living many years beyond treatment. Even after acute toxicities subside, late survivorship may be marked by visible and functional late effects that affect psychosocial well-being and everyday roles. This thesis examines psychosocial late effects among long-term HNC survivors treated at Oslo University Hospital and assessed more than five years after treatment. Across three papers, it addresses outcomes central to quality of life and long-term participation, cancer-related body image concerns, sexuality-related problems (sexual interest and sexual enjoyment), and long-term work disability, and evaluates whether these challenges are mainly linked to tumor and treatment history or are better explained by survivors’ current symptom burden and functioning within a biopsychosocial framework.
The thesis is based on a cross-sectional survivorship study conducted in 2018–2020. Eligible participants were adults treated for HNC at Oslo University Hospital in 2006 2012 who were at least five years post-treatment at assessment. Participants completed validated patient-reported outcome measures and attended a hospital assessment. Analytic samples included 258 participants in the body image and sexuality papers and 251 participants in the work disability paper, with predictive analyses restricted to a working-age subset of 145 survivors. Outcomes and correlates were assessed using the EORTC QLQ-C30 (physical, cognitive, emotional, and social functioning), the EORTC QLQ-HN35 (HNC-specific symptoms and sexuality items), the Body Image Scale, and the Chalder Fatigue Questionnaire. Body image concerns were divided into three groups (no concerns, mild-to-moderate concerns and body image distress) and examined using multinomial logistic regression. Sexual interest and enjoyment were examined using hierarchical linear regression. Long-term work disability versus employment was examined using hierarchical logistic regression in the working-age subset.
Body image concerns were common: 51% reported mild-to-moderate cancer-related concerns and 9% met criteria for body image distress. In multivariable models, body image distress (vs. no concerns) was associated with living without a partner, treatment with radiotherapy and surgery, worse emotional functioning, and higher oral pain, while mild-to-moderate concerns (vs. none) were linked to greater oral pain and speech problems. Sexuality-related problems were also prevalent, with 34% reporting substantial problems with sexual interest and 37% with sexual enjoyment. In the final multivariable model, lower emotional functioning was the strongest independent correlate, with smaller contributions from lower physical functioning and older age.
Work participation analyses showed that long-term work disability affected 33% of working-age survivors. Compared with employed and retired peers, those with long term work disability reported poorer physical, emotional, cognitive, and social functioning and higher oral symptom burden, with many clinically meaningful differences. In predictive models among working-age survivors, lower physical and cognitive functioning and body image distress independently predicted long-term work disability, and blue-collar occupation was an additional risk factor. Treatment variables were generally not independent predictors, but lower disability odds for those treated with chemoradiotherapy plus surgery versus radiotherapy alone were interpreted cautiously due to a very small subgroup size.
Overall, the thesis shows that clinically meaningful challenges related to body image, sexual interest and enjoyment, and work disability are prevalent in late HNC survivorship. Across outcomes, survivors’ current functioning and symptom experiences were more consistently related to these challenges than distal clinical factors such as tumor site, stage, or treatment modality, supporting a biopsychosocial understanding of survivorship. The findings suggest that follow-up relying mainly on clinical history may miss survivors with substantial psychosocial burden years after treatment, whereas systematic assessment of patient-reported symptoms and functioning may better identify unmet needs and guide targeted rehabilitation, psychological support, sexual health counselling, and vocational interventions. Because this thesis used cross-sectional design, future longitudinal and interventional studies are needed to clarify temporal pathways and to test whether improving modifiable late effects and emotional functioning leads to better long-term adjustment and participation.