Assessment of the patient perspective in children and adolescents with acne – Development of the Patient Benefit Index in Acne Youth (PBI-AY)

• Applicant: Dr. Rachel Sommer
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: from 2019 to 2020
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 417748830

This project aims to develop an instrument for the assessment of patient-relevant treatment goals and benefit in adolescents with acne vulgaris. Acne vulgaris manifests primarily at the age of 12-18 years. With a prevalence of more than 80% it is the most common skin disease in Germany. 40% of the patients show a chronic course with long-term inflammatory patterns and a clinical need for treatment. Of importance are the considerable psychological and social impairments of those affected. These can last for many years beyond the actual presence of the disease. With regard to a complete assessment of these impairments, next to an objective assessment of the disease severity, a subjective assessment of the treatment goals and benefits from the patient's perspective is needed. For a standardized assessment of the patient’s perspective, psychometrically tested instruments are needed. Therefore, the Patient Benefit Index (PBI) was developed. The PBI assesses patient-defined treatment goals and benefits. Before treatment, the patient completes the standardized “Patient Needs Questionnaire” on the individual importance of different treatment goals. During the course of treatment, the patient rates the extent to which the treatment goals have been achieved using the "Patient Benefit Questionnaire". An overall value is calculated for each patient by weighting the benefits achieved according to their importance for the individual patient. The original version was developed for use in various skin diseases and was validated for other diseases (also for use in adults with acne). For adolescents with acne vulgaris, however, an instrument for patient-related goal and benefit assessment is still lacking. Therefore, the aim is to develop a PBI for adolescents with acne vulgaris aged 12 to 18 years.The development will be performed according to international guidelines of instrument development. First, items and response options will be developed. Adolescents with acne vulgaris between the ages of 12 and 18 years will be interviewed individually (n=18) and in group discussions (n=24) about their impairments and needs. The data will be analyzed qualitatively. Based on the results, items and response options will be formulated within a consensus meeting.This will be followed by a comprehensibility and relevance testing of the pilot version. This will be investigated in interviews with those affected (n=32). The interviews will be analyzed qualitatively and the pilot version will be revised if needed. In a subsequent study, the instrument will be validated cross-sectional and longitudinally. If it proves to be valid and feasible, it can be used in future clinical studies and in practice to determine the benefit for patients.

• DFG Programme: Research Grants