Lost in the loop - A qualitative study on patient experiences of care in standardized patient pathways

Abstract

Abstract Background The Norwegian health authorities introduced standardized cancer patient pathways in 2015, aiming to reduce practice variations across hospitals and regions, and improve the continuity, coordination and overall quality of the health care service provided to cancer patients. Health service research has investigated the organisational and economic benefits of standardized pathways, whereas the element of care and the patient perspective has gained less attention. In this article we explore the care element in cancer patient pathways through an in-depth study of patient experiences. Methods Through a longitudinal qualitative design with in-depth patient interviews conducted during 2018–2021, we built a corpus of data on patient experiences from before, during and after treatment. The patients were enrolled approximately three years after the introduction of standardized cancer patient pathways in Norway. The empirical catchment area was eastern Norway. We did a thematic analysis driven by our analytical question on patient experiences of care, i.e., a theoretical thematic analysis. In the analytical work we were interested in the patients’ detailed stories as well as identifying what underlying ideas of care were shaping the patients experiences of the health service. Results The patient interviewees described it as a challenge that the cancer patient pathways were time-limited, with a clear start and stop, whereas their experience and understanding of the cancer diagnosis extended into their past and future lives. They further experienced that the services they received were fragmented, that there was a lack of continuity and collaboration within and between different health services, and that the help they received had a bio-medical focus on treatment only. Conclusions We conclude that cancer patient pathways offer good medical treatment, but that the care element deserves more attention. Current CPPs are trapped in a logic of choice, preventing room for the element of care to receive the attention it requires for the patient to truly experience holistic person-centred care and continuous, well-coordinated services.