Life after treatment for head and neck cancer

Sammanfattning: 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, 15 months after diagnosis 84% of the patients who were working at the time for diagnosis had returned to work. Factors negatively associated with return to work were swallowing difficulties, problems talking on the telephone, and changed physical appearance. In Paper III, the post-treatment weight loss was related to the degree of symptoms and interference with oral intake, which also increased the risk for a body weight loss of ≥10% at 12 months after the end of treatment. In Paper IV, the patients were still suffering from side effects one year after treatment and from fear of recurrence, but they tried to live as they did before the cancer diagnosis. Even if most contacts with health care were experienced positively, patients lacked regular follow-ups regarding rehabilitation and contact with their contact nurse.Conclusions: In Paper I, when resuming intimate relationships, the challenges were related to whether the patients were open or not about the disease. In Paper II, some remaining physical barriers were identified. A positive result from the study that can be reported to future patients is the high number of patients returning to work after treatment. In Paper III, both nutritional and clinical factors were shown to affect body weight, and a holistic approach is needed when addressing the patients’ nutritional needs. In Paper IV, despite the sequelae from treatment, the patients sought to live as they did before the diagnosis. This may disguise continuing needs, and by meeting the patients with engagement, the contact nurse-patient relation may uncover these needs and proper individualized support and rehabilitation can be offered.