Patient reported experiences (PREM): Cancer care pathway in the Stockholm-Gotland region

ABSTRACT

Background: Patient satisfaction is a goal that is part of the Swedish initiative for cancer care pathway (CCP). A questionnaire has been developed specifically to request patients‘ experiences (PREM) of care and an overall goal is that the patient perspective has a clear influence in the follow-up and evaluation of CCP. The purpose of this project is to describe patient reported experiences from CCP in the Stockholm-Gotland Region, during the period 2017 to q1 2021. It includes patients’ experiences from CCP, comparisons between groups and whether it differs before and during the COVID-19 pandemic. Methods: An invitation letter to complete a validated PREM questionnaire consisting of 34 questions, is sent to patients 8-10 weeks after CCP has ended. The main questions consist of seven dimensions and own comments can be shared. Results: A total of 14,141 persons responded to the questionnaire with an average response rate of 57%. Representativeness is good for patients where the investigation led to a cancer diagnosis, among the elderly and among patients who have undergone care processes for breast cancer, colon and rectal cancer, prostate cancer, bladder cancer or skin melanoma. Most of the patients are satisfied with CCP regarding overall impression, respect & treatment, continuation & coordination, information & knowledge, and availability. However, areas that can be improved are emotional support as well as participation & involvement. Where the investigation did not lead to a cancer diagnosis and during the COVID-19 pandemic has affected the relative’s situation negatively, both in terms of relatives' opportunity to participate in care and the relative's opportunity to get in touch with health care regarding their own issues or need of support. Conclusions: Most of the patients are satisfied with CCP. Areas that might be improved are emotional support as well as participation & involvement. The COVID-19 pandemic has affected the relatives' situation negatively. Legal entity responsible for the study Region Stockholm-Gotland. Funding: Has not received any funding. Disclosure All authors have declared no conflicts of interest.