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Intro: Population-based studies predominantly focused on carcinoma of the parotid gland (CPG) are rare. The study aims were to analyze the incidence of CPG and to assess treatment outcomes in relation to histopathology, preoperative diagnosis and adjuvant radiotherapy.

Methods: A retrospective analysis was conducted on data from the Swedish Head and Neck Cancer Register (SweHNCR), including 1,018 patients diagnosed with CPG between 2008 and 2019.

Results: The age-adjusted incidence remained stable with a mean of 0.9 (range 0.65–1.08) cases per 100,000 person-years (ASR-Europe). Curative treatment was administered to 90 % of the patients, with a recurrence rate of 9 % within 3 years. The highest recurrence rates were observed in patients with salivary duct carcinoma and adenocarcinoma, while patients with acinic cell and mucoepidermoid carcinomas had lower recurrence rates. For stage I–II tumors, the 5-year relative survival was unaffected by whether the malignant diagnosis was known preoperatively. Male sex, increasing age, stage III–IV disease, and a World Health Organization/ Eastern Cooperative Oncology Group (WHO/ECOG) performance status 2–4 was independently associated with increased overall mortality risk, whereas the timing of adjuvant radiotherapy was not.

Conclusion: This study contributes to establishing the incidence and treatment outcomes of CPG in Sweden and highlights the diverse histopathological diagnoses of these tumors. Notably, unknown malignancy at the time of surgery did not impact survival in early-stage disease, and the timing of postoperative radiotherapy was not associated with overall survival.

Background: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs’ well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs’ health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient’s health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients’ symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only.

Methods and analysis: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance.

Discussion: If proven effective, Carer eSupport has the potential to significantly improve ICs’ preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing.

Trial registration: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

Purpose: To examine how individuals treated for head and neck cancer perceive life one year after the end of treatment and how they experience supportive efforts from health care.

Methods: A semi-structured interview study of 21 patients was performed one year after the end of treatment. The patients gave their views concerning physical, psychological, and return-to-work issues, and their experiences concerning rehabilitative efforts from health care and particularly the contact nurse were captured. A thematic analysis was conducted.

Results: One year after treatment the patients were still suffering from side effects and from fear of recurrence, but they strived to live as they did before the cancer diagnosis, such as having returned to work and resuming leisure activities. Moreover, the rehabilitative efforts from health care had ended. Having access to a contact nurse, also known as a clinical nurse specialist, was positive, however, the participants lacked regular long-term follow-ups with the contact nurse regarding rehabilitation needs. Improvement possibilities were seen in clarifying the role of the contact nurse and that the contact nurse should show engagement and make the initial contact with the patients.

Conclusion: Despite the sequelae from treatment, the patients strived to live as before their diagnosis. By regular, engaged, and long-term follow-ups by the contact nurse, remaining needs may be uncovered, and appropriate individualized support and rehabilitation can be offered.

Purpose: The purpose of this prospective study was to assess which nutritional impact symptoms (NIS) interfere with oral intake in patients with head and neck cancer (HNC) and how the symptoms interfere with body weight loss, up to 1 year after treatment.

Methods: This was a prospective study of 197 patients with HNC planned for treatment with curative intention. Body weight was measured before the start of treatment, at 7 weeks after the start of treatment, and at 6 and 12 months after completion of treatment. NIS and NIS interfering with oral intake at each follow-up were examined with the Head and Neck Patient Symptom Checklist© (HNSC©).

Results: At 7 weeks of follow-up, patients experienced the greatest symptom and interference burden, and 12 months after treatment the NIS scorings had not returned to baseline. One year after treatment, the highest scored NIS to interfere with oral intake was swallowing problems, chewing difficulties, and loss of appetite. At all 3 follow-ups, the total cumulative NIS and NIS interfering with oral intake were associated with body weight loss. Factors increasing the risk for a body weight loss of ≥ 10% at 12 months after treatment were pain, loss of appetite, feeling full, sore mouth, difficulty swallowing, taste changes, and dry mouth. Women scored higher than men in NIS and NIS interfering with oral intake. Furthermore, during the study period about half of the population had a body weight loss > 5%.

Conclusion: Because both nutritional and clinical factors may affect body weight, this study highlights the importance of a holistic approach when addressing the patients’ nutritional issues. Trial registration: ClinicalTrials.gov NCT03343236, date of registration: November 17, 2017.

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.

Background: To describe the frequency of patients returning to work after treatment for oropharyngeal cancer and to identify predictors and physical barriers that might interfere with the return to work process.

Methods: Cross‐sectional study including 295 patients. Data were collected regarding work/sick leave situation at 1 month before diagnosis and 15 months after diagnosis. The situation before diagnosis was retrospectively recalled by the patients. Two subscales and two single items from the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire‐H&N35 were used. Data were analyzed with multivariate logistic regression.

Results: Fifteen months after diagnosis, 212 patients (72%) were working. To be working 15 months after diagnosis was associated with working before diagnosis. Swallowing difficulties, problems talking on the telephone, and physical appearance were negatively associated with returning to work.

Conclusions: The large number of individuals returning to work is encouraging for patients diagnosed with oropharyngeal cancer.

The aim of this study was to determine how patients with head and neck cancer experience changes within their intimate relationships at the end of treatment and detect detrimental and facilitating factors in the process of resuming intimate relationships. Interviews were conducted with 131 patients. A core category – "Being open vs. not sharing the cancer journey" – emerged from the patients' narratives and was based on the experiences of engagement/disengagement, openess/fear, and patronising attitudes/sharing the burden. The findings point to the necessity of patients being open about the disease trajectory and might be understood in the light of theories about potential changes in identity and self-concept.

Aims and objectives: The purpose of this study is to systematically explore the motives for patients with head and neck cancer to contact a speciaist nurse during two years postdiagnosis.

Background: Research focusing on the role of specialist nurses in cancer care almost exclusively concern cancers other than head and neck cancer

Design: Qualitative, descriptive study based on the contacts between patients with head and neck cancer and a specialist nurse.

Methods: Patients were invited to contact a specialist nurse by telephone. The specialist nurse took systematic field notes, that is, she registered who contacted her, the nature of the call and the outcome. Sixty patients were included.

Results: In descending order, the motives for contact were questions about practical and uncomplicated matters, consultations about medical troubles/worries, presenting a report of the patient's situation, requests for additional information about the treatment plan and requests for medical information. The pattern of the patients' motivations for calling was not related to medical or social factors, suggesting that the initiative to make a contact is very much a question of the complexity of individual life circumstances. Very few referrals were sent from the specialist nurse to other professionals.

Conclusions: The specialist nurse turned out to be more than just a coordinator of health-care resources. The findings bring up questions about the potential of the nurse's function as a coordinator, but also as a potential attachment figure, and questions about the nurse's relationships to other professionals.

Relevance to clinical practice: When implementing a specialist nurse function, it is important to decide whether the function should be inspired by a broader relational perspectice. In addition to the indispensible competence and experience in the clinical field of head and neck cancer, training in counselling and acquaintance with object-relational psychology will then be desirable.

Most studies of the psychosocial needs of patients with head and neck cancers' (HNC) use predefined categories and explicitly ask for specified needs. These studies are important but should be complemented with inductive studies based on patients' own descriptions of experiences. The present qualitative study is such a contribution. In repeated interviews positive and negative incidents were collected from 137 patients with HNC, and these experiences were categorized in dimensions expressing needs. A core category - 'being included - neglected by a helping system' - emerged from the narrated incidents and it was based on the dimensions 'engagement', 'competence' and 'information'. The findings are easily related to attachment theory by stressing the significance of establishing trustful relationships with the health care staff, as attachment figures, who respond flexibly and sensitively to the patient's needs. In the constitution of health care as a helping system, all encounters between the patient and health care staff matters. Further research should preferably focus on the creation of guidelines for the constitution of health care as a helping system, i.e. how the found factors of a helping system can be operationalized in clinical practice.