Nurse coordinator roles in the management of patients with hepatocellular carcinoma: A French national survey

International audienceHepatocellular carcinoma (HCC) mostly occurs in patients with chronic liver disease (CLD). HCC treatment may have a direct impact on CLD prognosis. HCC management can therefore become complex, involving multiple health care providers, such as oncologists, hepatologists, radiologists, and surgeons. In France, dedicated nurses have been involved in patient care pathways. Their impact is poorly documented.Purpose: To determine the country-wide distribution of HCC nurse coordinators in French health care settings and to describe their roles and responsibilities.Patients and methods: A survey using a multi-item questionnaire (including center characteristics, nurse coordinator characteristics, and quality indicators such as patient care pathway initiation timeline, scheduled length of hospital stay, diagnostic disclosure process) was conducted. All French liver cancer centers planning to participate in a prospective national cohort study for patients with HCC (CHIEF Cohort) were invited to take part in the survey. Bivariate analysis compared centers with a nurse coordinator to those without.Results: Among the 42 of 72 centers that replied, 14 treated fewer than 75 HCC patients. Treatment mostly took place in hepatology units (34/42). Sixteen nurse coordinators were part of the health care team in 13 of the 42 centers. Among these 13 centers, 11 were university hospitals and 11 followed more than 75 patients per year. The median number of patients followed in these centers was 300 (min-max 44-600) in 2017. All nurse coordinators were involved in providing patient information and counseling. Other roles included treatment monitoring (13/16), care coordination (12/16), psychological support (12/16) and treatment planning (11/16). Thirteen nurse coordinators conducted diagnostic disclosure nurse consultations; seven conducted initial patient contact consultations; and six held outpatient nurse consultations, with wide heterogeneity between centers. The presence of a nurse coordinator was associated with completion of the full diagnostic disclosure process (p = 0.045).Conclusion: In France, nurse coordinators for HCC patient pathway management are present mainly in university hepatology units with a caseload of more than 75 patients per year. All provide patient information and counseling but their roles in care coordination, patient support and holistic assessment are heterogeneous and not standardized