Background: Patients with oesophageal and gastric cancer face a poor prognosis and multiple symptoms and problems that negatively affect their quality of life. In view of the prognosis and extensive illness burden, an early palliative care approach is of importance.

Aim: The overall aim of this thesis was to describe and compare symptoms, problems and care needs in relation to the initial treatment strategy among patients newly diagnosed with oesophageal and gastric cancer and to explore how those with incurable illness manage everyday life.

Method: The project comprised three studies with a quantitative (Studies I–III) and one study with a qualitative design (Study IV). Study I and II were based on a Swedish cohort of patients who died from oesophageal and gastric cancer in 2014–2016. Data were collected from the National Register for Oesophageal and Gastric Cancer (Studies I and II), the National Cause of Death Register (Studies I and II), the Swedish Register of Palliative Care (Study I) and the National Patient Register (Study II). The impact of the initial treatment strategy and survival time on the quality of end-of-life care (Study I) and the impact of initial treatment strategy and assignment of a contact nurse on health care use (Study II) were investigated. Study III was a cross-sectional study on patients newly diagnosed with oesophageal and gastric cancer. Data on quality of life, symptoms and problems were collected using the European Organization for Research and Treatment of Cancer (EORTC) instruments QLQ-C30 and QLQ-OG25 and the Integrated Patient Outcome Scale. Study IV was a semi-structured interview study on how persons newly diagnosed with incurable oesophageal and gastric cancer manage everyday life.

Results: Patients with a survival of ≤3 and 4–7 months had higher risk for hospital death compared with patients with a survival ≥17 months. Patients surviving ≤3 months had lower risk for bereavement support and end-of-life information, compared with those with a survival ≥17 months. The performance of an oral health assessment and pain assessment was not associated with survival time (Study I). Patients with palliative treatment and no tumour-directed treatment had a higher incidence rate ratio for unplanned care compared with those receiving curative treatment. Patients with no tumour-directed treatment also had a lower incidence rate ratio for planned care compared with those with a curative treatment. Patients with a contact nurse assigned to them had higher incidence rate ratios for unplanned care and planned outpatient care visits, compared with patients with no contact nurse assigned (Study II). Among all patients, the quality of life was markedly lower than in the general Swedish population, and impairments were found in all aspects of quality of life, particularly role and emotional functioning and symptoms such as eating-related problems, fatigue, insomnia and dyspnoea. The majority of patients reported severe anxiety among family and friends. Among patients with oesophageal cancer, those with a palliative treatment strategy, compared with a curative strategy, reported lower quality of life, and physical and role functioning, and higher intensity of several symptoms and problems. Among patients with gastric cancer, no differences between treatment groups were found (Study III). Interpretation of the interviews resulted in the overall theme “Striving towards normality in an unpredictable situation”, with three related themes, “Trying to comprehend the disease”, “Dealing with the consequences of illness” and “Re-evaluating what is important in everyday life”, and seven subthemes (Study IV).

Conclusion: Patients newly diagnosed with oesophageal and gastric cancer suffer from poor quality of life and several burdensome symptoms and problems and those with the poorest prognosis exhibit the highest risk of receiving unplanned care and low-quality end-of-life care. Patients with incurable illness manage their everyday life by striving for normalcy. The findings emphasize the need for a proactive palliative care approach to enhance patients’ quality of life and ability to manage the new life situation.