Not a Straight Line—Patients’ Experiences of Prostate Cancer and Their Journey Through the Healthcare System

Background Cancer and its treatment can severely impact quality of life, giving rise to complex needs with respect to follow-up care. To support patient needs and increase efficiency of care with limited resources, the Swedish government has launched national reforms to redesign cancer care pathways. Objective The aim of this study was to explore how prostate cancer patients experience their journey through the healthcare system when their care is provided according to the standardized care pathway, as described in healthcare policy documents. Methods A qualitative, descriptive approach with individual interviews was used. A template of a standardized prostate cancer pathway, created together with healthcare professionals, was used during interviews. Fourteen interviews were conducted with prostate cancer patients all operated on at a midsized hospital in southeast Sweden between October 2015 and April 2016. The interviews were analyzed with qualitative content analysis and illustrated in a patient journey map. Results We identified an overall theme, “walking a tightrope,” consisting of 4 categories: “waiting,” “becoming familiar with a troublesome body,” “adjusting to a different life,” and “information challenges.” Conclusions The clinical implementation of the standardized care pathway is described as a straight path through care, but patients described their experiences as walking a tightrope. Lack of information, especially about cancer treatment and its adverse effects, was the most common experience. Implications for Practice Our findings indicate areas where further healthcare tools could improve patient experiences of cancer treatment. This could include offering individualized information and tools to increase patient empowerment, as well as patient/caregiver collaboration (co-care).