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Matthias Augustin, Rachel Sommer, Christine Blome, Natalia Kirsten, Anna Langenbruch German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanyCorrespondence: Matthias Augustin, German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, Hamburg, 20246, Germany, Tel +49 40 7410 55428, Fax +49 40 7410 55348, Email m.augustin@uke.deIntroduction: Evaluation of patient-reported outcomes including health-related quality of life (HRQoL) and perceived benefits from treatment has become a fundamental component of medical decision-making. Standardized evaluation of treatment benefits in rosacea based on patient preferences is still lacking.Objective: Development and validation of an instrument for recording patient-defined benefits in rosacea therapy based on the Patient Benefit Index (PBI) methodology.Patients and Methods: In an open survey of n = 50 patients, potential benefits of therapy from the patient’s perspective were examined. The generated item pool was combined with pre-existing PBI items for other skin conditions and reviewed by an expert panel of dermatologists, psychologists and patients. Items were condensed to n = 25 and converted into a Likert-scaled questionnaire. The validity and feasibility of the resulting Patient Benefit Index for rosacea (PBI-RO) were tested on individuals with rosacea recruited from a German rosacea patient organization.Results: N = 446 patients with rosacea completed the PBI-RO. The internal consistencies measured by Cronbach’s alpha were high (Patient Needs Questionnaire [PNQ] 0.94). Mean PBI-RO was 1.9 ± 1.2 (scale from 0 = no benefit to 4 = maximum benefit), 23.5% of the patients experienced a PBI-RO < 1 (no clinically relevant benefit). The PBI-RO correlated with HRQoL, health state, current extent of rosacea lesions and treatment satisfaction. The highest correlation was found between PBI-RO and satisfaction with previous treatment (r = − 0.59, p < 0.001); correlation with the extent of rosacea lesions was low (r = 0.16, p < 0.001).Conclusion: The PBI-RO shows satisfying internal consistency and construct validity. It offers the option of a patient-weighted evaluation of the therapeutic benefit of rosacea therapy and may add to more stringent goal orientation in therapy.Keywords: patient needs, treatment goals, disease burden, health-related quality of life, Patient Benefit Index, rosacea

Janine Topp,1 Christine Blome,1 Matthias Augustin,1 Nicole Mohr,1 Eike Sebastian Debus,2 Holger Diener,2 Rachel Sommer1 1Institute for Health Services Research in Dermatology and Nursing (IVDP), German Center for Health Services Research in Dermatology (CVderm), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany; 2Department of Vascular Medicine, University Medical Center Hamburg‐Eppendorf (UKE), Hamburg, GermanyCorrespondence: Rachel SommerInstitute for Health Services Research in Dermatology and Nursing (IVDP), German Center for Health Services Research in Dermatology (CVderm), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanyTel +49 (0) 40 7410 24724Fax +49 (0) 40 7410 40160Email r.sommer@uke.deBackground: The questionnaire for the quality of life with chronic wounds (Wound-QoL) is a valid and reliable instrument to determine the disease-specific health-related QoL of patients with chronic wounds. For the interpretation of HRQoL scores, it is additionally important to know which differences in scores are considered meaningful. The minimal important difference (MID) is defined as a change in HRQoL that a patient would consider meaningful, such that the patient would judge a treatment to be beneficial and worthy of repeating.Objective: To interpret changes in the Wound-QoL scores and draw conclusions regarding the relevance of detected changes; the purpose of this study was to estimate the MID of the Wound-QoL global score and its subscales for patients with chronic wounds.Patients and Methods: Patients completed the Wound-QoL before and four to six weeks after treatment and additionally gave a global rating of wound status change after treatment. The global rating of change served as an anchor question. MIDs were calculated based on an anchor-based and a distribution-based method.Results: In total, 227 patients participated in the study. The mean age of the study population was 66.9 (± 12.7) median was 69.5, and 51.5% of the patients were female. MIDs for the Wound-QoL global score ranged from 0.47 to 0.52, proposing an overall estimation of 0.50.Conclusion: The results can be used to measure and interpret changes in wound-specific QoL over time.Keywords: MID, minimal important difference, health-related quality of life, chronic wounds

Mandy Gutknecht,1 Marthe-Lisa Schaarschmidt,1,2 Marion Danner,3 Christine Blome,1 Matthias Augustin1 1German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany; 2Department of Dermatology, University Medical Center Mannheim, Heidelberg University, Mannheim, Germany; 3Institute for Health Economics and Clinical Epidemiology (IGKE), University Hospital of Cologne, Cologne, Germany Background: Psoriasis affects different aspects of health-related quality of life (eg, physical, psychological, and social impairments); these health domains can be of different importance for patients. The importance of domains can be measured with the Patient Benefit Index (PBI). This questionnaire weights the achievement of treatment goals by Likert scales (0, “not important at all” to 4, “very important”) using the Patient Needs Questionnaire (PNQ). Treatment goals assessed with the PBI have been assigned to five health domains; the importance of each domain can be calculated as the average importance of the respective treatment goals. In this study, the PBI approach of deriving importance weights is contrasted to a discrete choice experiment (DCE), in order to determine the importance of health domains in psoriasis, and to find if the resulting weights will differ when derived from these two methods.Methods: Adult patients with psoriasis completed both questionnaires (PNQ, DCE). The PBI domains were used as attributes in the DCE with the levels “did not help at all”, “helped moderately”, and “helped a lot”.Results: Using DCE, “improving physical functioning” was the most important health domain, followed by “improving psychological well-being”. Using PNQ, these domains were ranked in position two and three following “strengthening confidence in the therapy and in a possible healing”. The latter was least important using DCE. The only agreement of ranking was shown in “reducing impairments due to therapy” (position four). “Improving social functioning” was ranked in position three (DCE) and five (PNQ).Conclusion: Health domains have different importance to patients with psoriasis. Using PNQ or DCE to determine the importance of domains results in markedly different rankings; both approaches can thus not be considered equivalent. However, in this study, importance was assessed at the domain level in DCE and at the single item level in PNQ, which may have added to the differences. Keywords: conjoint analysis, Patient Benefit Index, patient-reported outcomes, preferences

Many events, including the COVID‐19 pandemic, have accelerated the implementation of teledermatology pathways within dermatology departments and across healthcare organizations. Quality of Life (QoL) assessment in dermatology is also a rapidly developing field with a gradual shift from theory to practice. The purpose of this paper organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and patient‐oriented outcomes and the EADV TF on teledermatology is to present current knowledge about QoL assessment during the use of teledermatology approaches, including data on health‐related (HR) QoL instruments used in teledermatology, comparison of influence of different treatment methods on HRQoL after face‐to‐face and teledermatology consultations and to make practical recommendations concerning the assessment of QoL in teledermatology. The EADV TFs made the following position statements: HRQoL assessment may be an important part in most of teledermatology activities; HRQoL assessment may be easily and effectively performed during teledermatology consultations. It is especially important to monitor HRQoL of patients with chronic skin diseases during lockdowns or in areas where it is difficult to reach a hospital for face‐to‐face consultation; regular assessment of HRQoL of patients with skin diseases during teledermatology consultations may help to monitor therapy efficacy and visualize individual patient's needs; we recommend the use of the DLQI in teledermatology, including the use of the DLQI app which is available in seven languages; it is important to develop apps for dermatology‐specific HRQoL instruments for use in children (for example the CDLQI and InToDermQoL) and for disease‐specific instruments. [ABSTRACT FROM AUTHOR]