The NEQ-LD was developed including 23 items from the NEQ19 (link),20 and 4 items (i.e., “I need help in transfer from home to hospital,” “I need more dialogue between hepatologists and general practitioner,” “I need more help to maintain my normal daily activities as much as possible,” and “I need help in facing problems with my sex life”) adapted from the “Supplementary outpatient module” proposed by Bonacchi et al.22 (link) A focus group discussion including 3 hepatologists and a clinical psychologist with experience in Hepatology was conducted to remove items from the NEQ deemed inappropriate for patients with liver diseases, and to develop items specific to the hepatologic context. None of the 27 items developed in oncology were deemed inappropriate or unusable in Hepatology by the experts, and 2 items were added (“I need to have more information on the transmission of my disease” and “I need to have more information on norms and behaviors that can improve my health [healthy balanced diet, appropriate exercise, etc.]”). These additional items are largely aligned with the literature towards health attitudes and behaviors specific to patients with liver diseases.23 (link) Thus, we obtained a self-administered instrument with 29 dichotomous items (i.e., yes/no answer) about informative, assistance/care, relational, psychoemotional and spiritual support, and material needs. Higher scores indicate that there are more unmet needs (range: 0–29). Since the NEQ-LD is a newly developed instrument for patients with liver diseases, we added an open-ended question at the end to ask patients to list any further unmet needs that were not included in the questionnaire. With this additional question, we aimed to ascertain the requirement to add new items to better describe patients’ unmet needs.
The participants filled out a paper-and-pencil self-report battery that included the NEQ-LD and the following scales (for a detailed description, see Supplementary File 1, http://links.lww.com/HC9/A23).