Care trajectory, informational needs and challenges faced by patients with neuroendocrine tumors: a mixed methods study

Objectives Patients with neuroendocrine tumors (NETs) encounter various challenges, including delayed diagnosis and difficulty finding high-quality NET-specific information. They also have difficulty finding relevant information about their condition. The purpose of this study was to explore the experiences of patients living with NETs. More specifically, the objectives were to document their care trajectories and explore informational needs. Methods Fifteen NET patients were approached by their surgical oncologist. Thirteen agreed to participate in semi-structured interviews alone or with their spouse, as preferred. Interviews were transcribed verbatim and the analysis was inductive, allowing theories to emerge directly from the data. In addition, all participants completed a questionnaire to collect sociodemographic and disease-related data. Results Among the patients recruited, a mean of 26.6 months separated the start of symptoms from the moment of diagnosis. On average, an additional 12.8 months elapsed before referral to a specialized center. Fully 76.5% of patients felt well informed, but only 47.1% believed the available information was reliable. Facilitating factors included their relationship with specialists, as well as having relatives working in healthcare and a multidisciplinary team, including nurse navigators. Significant challenges included discordances between the different sources of information, as well as having a limited understanding of medical terms. Conclusions and implications for practice There is great inequity in access to information and a lack of validated information available to patients and their relatives. Moreover, rapid referral to NET-specialized centers with access to a multidisciplinary team could ease patients’ care trajectory and facilitate the provision of information. Practice implications Healthcare professionals caring for NET patients should systematically assess informational needs at key points in the trajectory, provide repeated plain-language explanations, and proactively direct patients to curated NET-specific resources. Nurse navigators, multidisciplinary teams and trained patient partners may help bridge information gaps, support shared decision-making and facilitate self-management.