Assessment of the patient perspective in children and adolescents with acne – Development of the Patient Benefit Index in Acne Youth (PBI-AY)
Final Report Abstract
In order to be able to fully assess the need for therapy, a subjective assessment of the therapy goals and the therapy benefit from the patient's perspective is required in addition to an objective assessment of the severity of the disease. The methodology of the Patient Benefit Index, which has been developed and validated in different versions for use in various skin diseases and is already used internationally in studies and practice, is suitable for this purpose. The aim of the project was the development of a Patient Benefit Index version to assess the therapy goals and therapy benefit in adolescents with acne vulgaris. The methodology followed international guidelines for developing such instruments. First, items and the response format were developed. For this purpose, adolescents with acne vulgaris aged 13 to 18 years were interviewed individually (n=42) about their impairments and needs. Mean age of the participants was 15.5 years. Data analysis was based on content analysis. A comprehensibility and relevance test of the pilot version followed. For this purpose, affected persons (n=28) were asked to complete the new questionnaire, including three additional questions per item on comprehensibility, acceptance and relevance. The data was evaluated descriptively. After a qualitative evaluation of the interviews, a category system consisting of 16 main categories and two sub-categories could be formed, to which a total of 175 statements could be assigned. Based on the category system, 14 items could be derived for the pilot version of the questionnaire. These cover physical (e.g. pain, itching), social/emotional (e.g. restrictions at school or leisure, well- being) and practical topics (e.g. frequency of visits to the doctor, side effects). Response options range from "does not concern me at all" to "concerns me very much". The comprehensibility test showed a high level of acceptance among those affected and agreement with the comprehensibility of the items (93.7%); relevance (95.2%). The question of whether the items are too personal was answered in the negative by the majority (98.8%). The PBI-AY is the first instrument to record the therapy goals and the therapy benefit in adolescents with acne. In a follow-up study, the instrument is to be psychometrically validated. If it proves to be valid and practicable, it can be used in clinical studies as well as in practice to determine the patient benefit in juvenile acne. In practice, its use can lead to improved doctor-patient communication and thus to improved patient satisfaction, which has a positive effect on the quality of life. The questionnaire also enables for the first time the introduction of patient-oriented therapy goals in the treatment of acne and thus facilitates shared-decision-making by doctor and patient.
