Person-centered care supported by an interactive app for patients with pancreatic cancer following surgery

Background: Patients with pancreatic or periampullary cancer experience severe symptoms and have poor prognosis even after intentionally curative surgery. To meet patients’ needs healthcare professionals are required to form partnerships with patients. Routine collection and management of symptoms with support of mHealth have shown promising results on improved health-related quality of life and decreased symptom distress for patients with cancer. Aim: To evaluate if collection and management of patient-reported outcomes in clinical practice, with support of an interactive app (Interaktor), can enable person-centered care and improve outcomes for patients who have undergone pancreaticoduodenectomy due to cancer. Methods: Trough Interaktor patients reports symptoms, which are monitored and responded to by clinical nurses. In the app patients can also view graphs over their previous reports and read self-care advice. The Medical Research Council’s framework for complex interventions was used to develop and evaluate the app. In Phase I the content in the app was developed by interviews with patients (n=14) and healthcare professionals (n= 10). In Phase II the app was tested for feasibility by patients (n=6) during one month. In Phase III the app was evaluated by analyzing the impact of symptoms and self-care activity in patients (n=26) using the app for six months, compared with a historical control group of patients (n=33) not using the app, by analysis of patients’ (n=26) logged data in the app, and through interviews with patients (n=25) using the app. Results: The results in Phase I contributed to knowledge on important symptoms to assess and some self-care advice and strategies to manage these symptoms which formed the content in the Interaktor app. The results in Phase II showed that the app was feasible and had relevant content. The patients felt reassured and taken cared of at home and got support for symptom management. The results in Phase III showed that using the app decreased symptoms and increased self-care activity after pancreaticoduodenectomy. Further, patients using the app had high adherence to report symptoms as intended, and felt that they could have their voices heard trough the app, and that they had an extended arm to healthcare and learned about their own health. Conclusion: The thesis shows that an interactive app like Interaktor can support patients with severe symptoms and poor prognosis. Person-centered care can be enabled by making the patients active partners in care and by timely identification of symptoms important to patients. LIST OF SCIENTIFIC PAPERS I. Gustavell, T. , Sundberg, K. , Frank, C. , Wengström, Y. , Browall, M. , Segersvärd, R. , Langius-Eklöf, A. (2017). Symptoms and self-care following pancreaticoduodenectomy: Perspectives from patients and healthcare professionals – Foundation for an interactive ICT application. European journal of oncology nursing: the official journal of European Oncology Nursing Society, 26, 36-41. II. Gustavell, T. , Langius-Eklöf, A. , Wengström, Y. , Segersvärd, R. , Sundberg, K. (2019). Development and Feasibility of an Interactive Smartphone App for Early Assessment and Management of Symptoms Following Pancreaticoduodenectomy. Cancer Nursing, 42, (3). III. Gustavell, T. , Sundberg K. , Segersvärd, R. , Wengström, Y. , Langius-Eklöf, A. (2019). Decreased symptom burden following surgery due to support from an interactive app for symptom management for patients with pancreatic and periampullary cancer. Acta Oncologica. Submitted. IV. Gustavell, T. , Sundberg, K. , Langius-Eklöf, A. (2019). Being seen as a person when using an interactive app for symptom reporting and management: A descriptive study. Manuscript.