Knowledge regarding the disease and its treatment is a prerequisite for good medication adherence. Most treatment centers implement some form of patient and family education in their routine clinical practice. The National Arthritis Advisory Board in the United States has developed standards for arthritis patient education (82) and provided the following definition:
Patient education is planned, organized learning experiences designed to facilitate voluntary adoption of behaviors or beliefs conductive to health. The activities of a patient education program must be designed to attain goals the patient has participated in formulating. The primary focus of these activities includes the acquisition of information, beliefs and attitudes which impact on health status, quality-of-life, and possibly health care utilization.
Careful discussion about the name, purpose, dose, and schedule of prescribed medications is indicated (16). Information regarding possible side effects is necessary (16). The importance of other aspects of treatment should be stressed as well. The health care provider should thereby involve the patient as partner in the educational process, acknowledging patient's previous illness experiences, knowledge and beliefs, rather than providing one-way information (17). Learning formats can be highly variable and can encompass booklets, lectures, role-plays, contracting, goal setting and sharing experiences (83). It is crucial to use a stepwise approach, that is, information must not be overwhelming: pace, amount and presentational style need to be tailored to the child's age, cultural background, and language, as well as their cognitive and intellectual abilities (17). Use short sentences and avoid jargon (4). At the end of the education process, the adolescent can be asked to re-iterate the information, in order to monitor the level of understanding (4). Formal evaluation can be performed by interview, fill-in-the-blank or multiple-choice questionnaires, and situational role-play. Education best can be repeated during clinical follow-up visits, particularly with a disease such as chronic rheumatic diseases in which symptoms wax and wane over time (4). Patients should be encouraged to ask questions (51). Kyngas et al. (1) thereby suggests that educational programs should be based on an appraisal of each adolescent's needs rather than relying upon the application of a package suitable for all.
Education also provides the opportunity to discuss health beliefs, and to modify wrong beliefs regarding medication effectiveness, and by promoting realistic expectations about risk/benefit ratios (16,84). Barriers to adherence anticipated by the patient and the family and ways to facilitate adherence in the home environment may also be addressed (4,17).
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