Life after treatment for head and neck cancer

Background: Treatment for head and neck cancer (HNC) is often multimodal, including surgery, radiotherapy, and chemotherapy. The anatomic location of HNC and its treatments often affect vital functions such as swallowing and speech, but also physical appearance, leading to a risk for social withdrawal and nutritional difficulties that can affect the patient’s quality of life. Aims: The general aims of this thesis were to describe the physical and social consequences for patients treated for HNC and to identify supportive needs in regaining a new everyday life including intimate relationships, return to work, and nutritional recovery. Methods: Paper I (n = 131), objectives: to determine how patients with HNC experience changes in intimate relationships and to identify factors interfering with such relations. A semi-structured interview study was carried out on patients after treatment, and the analysis was inspired by the guidelines in constructive Grounded Theory. Paper II (n = 295), objective: to describe the frequency of patients’ returning to work after treatment for oropharyngeal cancer and to identify predictors and physical barriers (with a focus on pain, swallowing and speech difficulties, and physical appearance), that might interfere with the return-to-work process. A cross-sectional study using questionnaires was carried out 15 months after the diagnosis. Data were obtained from the Swedish Head and Neck Cancer Register. Paper III (n = 197), objective: to assess nutritional aspects and body weight in patients with HNC. A nutrition impact symptom-specific questionnaire for HNC was used to assess symptoms interfering with oral intake as well as interfering with body weight during the first year post-treatment. Paper IV (n = 21), objective: to examine how patients with HNC perceive life one year after treatment and how they experience health care. A semi-structured interview study was performed with an interview guide developed using concepts from the literature and clinical experience, and a thematic analysis approach was used. Results: In Paper I most patients reported no major changes in intimate relationships at the end of treatment. In resuming intimate relationships, facilitating factors were stable relationships before treatment, engagement from others, and being open regarding the cancer, while detrimental factors were patronization and dis-engagement. This was summarised as “being open versus not sharing the cancer journey”. In Paper II , 1