Abstract

Background Knowing the opinions of patients with Progressive Neurological Diseases and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire. Methods Following focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns and fears regarding dying, and opinions on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members. Results The final version of the scale contains a total of 28 questions divided into six domains and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire. Conclusions The APND-EoLC questionnaire can be recommended for use in both research and clinical practice.