Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

BACKGROUND: Progressive neurological diseases, such as multiple sclerosis, Parkinson’s disease, Huntington’s disease, significantly interfere with patients’ lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients’ health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases. METHODS: Qualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding. RESULTS: It was determined that adequate information about patients’ health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome. CONCLUSION: Our results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.