Patient and family perspectives on out-patient palliative care: Mixed-method study

Patients with serious or terminal illness may suffer from a reduced quality of life (QOL) and multiple symptoms, such as pain, fatigue, and dyspnea due to their illness and/or its treatment. Patients and families may have different palliative care needs, and though we know from studies that personalized care by multidisciplinary teams and communication are central elements of quality of care and satisfaction, research does not clearly prescribe a model for outpatient Specialized Palliative Care (SPC). Thus, when deciding how to organize outpatient SPC in the future, it is relevant to investigate the patients, families, and staffs experiences and needs.
The overall purpose is to gain new knowledge about, what is important to patients and families when receiving outpatient SPC, and to include this knowledge in future organization. We will compare two different models of organizing SPC. Three perspectives represented in separate studies will highlight the purpose; they are patient and families’ experiences, staffs experiences, and cost effectiveness of the two models.
The study is a mixed method study and contains three independent studies using questionnaires containing Patient Reported Outcome (PRO), semi-structured interviews, field observations, and registry data.
Results from the questionnaires will be presented at the conference.
We expect to gain knowledge within the user-centered, perspective. This is interesting as research suggest that patient involvement is important for symptom control, satisfaction, and results in improved patient centered solutions. The results from this study will form the basis of the future outpatient SPC effort at Zealand University Hospital.