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

Abstract

Background The Norwegian health authorities introduced standardized cancer patient pathways (CPPs) 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. There has been few studies investigating this change, and that have looked into the organisational and economic benefits of standardized pathways, however the element of care and the patient perspective has been especially neglected. This study explored the care element in cancer patient pathways through an in-depth study of patient experiences.

Methods The patients were enrolled approximately three years after the introduction of standardized CPPs in Norway. Through a qualitative design with in-depth interviews, a total of 21 interviews were conducted with seven patients between 2018 and 2020. The first interview took place after the diagnosis was established and before treatment, the second interview during treatment, and the final interview approximately one year after the completion of active treatment. The empirical catchment area was eastern Norway. Data were analysed using a theoretical thematic analysis.

Results This study sheds light on the complex challenges patients’ faces, while navigating CPPs, including the need for better transition support, improved coordination and continuity in care, and a more holistic approach that encompasses emotional well-being and family support. Three overarching themes were identified: [1] Navigating CPPs: patient care and transition challenges, [2] Fragmented cancer care: challenges in coordination and continuity [3] Unmet needs and overlooked opportunities in CPPs.

Conclusions Patients experience 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. Based in our study we argue there is a need to look into the missed opportunities for using the CPPs as points of departure for more holistic collaborative models for cancer care.