Patient Education in Pemphigus: Current Evidence, Challenges, and Future Directions

Abstract

Background: Pemphigus is an autoimmune blistering condition that is lifelong and requires long periods of time to control, monitor and treat the condition by the patient. Little was known however about the effect of patient education on the health related quality of life of the users of a specialist service in Albania.

Objective: The objective of this study was to identify factors that would explain these relationships between quality of patient "education", health-related quality of life and to describe the mediating role of pemphigus-related knowledge, treatment adherence and self-care practices and to explore the moderating influence of "health literacy".

Methods: The design of the study is Cross Sectional, quantitative and explanatory. The study was carried out in Mother Teresa University Hospital Center in Tirana, the University Hospital of Trauma of the municipalities of Tirana and Pegasus and EB Dermatology Clinic in Tirana where a total number of 513 pemphigus patients were contacted with whom data were collected. The structured questionnaire was used to collect the data, which consisted of 29 items, and the analysis of the data was carried out by Partial Least Square Structural Equation Modelling (PLS-SEM).

Results: Quality of patient education had a positive impact on patient education related to health quality of life, becoming aware of the disease pemphigus and treatment adherence and self-care practices. Health-related quality of life was also this way in the factors related to pemphigus knowledge and treatment adherence and self-care practices. For patient education and knowledge or adherence to self-care, there was a great enhancement to these relationships through health literacy, although the direct relationship between patient education and quality of life was not significantly enhanced. Both mediators partially mediated the effect and there was a larger indirect effect in the behavioural pathway.

Conclusion: The conclusion shows that quality patient education leads to improved knowledge, adherence and self-care behaviors, as well as improved health-related quality of life. In every of the specialist healthcare facilities in Albania, both public and private, education of structured, literacy-oriented and behaviour-oriented should be an integral part of the care for patients suffering from pemphigus throughout the country.