<p>A Method for Designing a Patient Burden Questionnaire in Dermatology</p>

Abstract

Introduction In recent years, the concept of “disease burden” has been given a central role in evaluating patient care, particularly in skin diseases. Measuring patient-reported outcomes (PRO) such as symptoms and disease burden may be useful. Aim To present a methodology that facilitates the development and validation of burden questionnaires for patients suffering from skin diseases. Methodology Based on past published burden questionnaires, a methodology for designing skin disease burden questionnaires was to be developed. Results Based on 16 burden questionnaires developed and published over the last 10 years, the authors propose a standardized methodology for the easy design and validation of disease burden questionnaires for patients with chronic skin diseases. The authors provide detailed guidance for the conception, development and validation of the questionnaires, including reliability, internal consistency, external validity, cognitive debriefing, testing–retesting, translation and cross-cultural adaptation, as well as for statistical analysis. Conclusion The proposed methodology enhances the design and validation of disease burden questionnaires in dermatology. Burden questionnaires may be used in clinical research as well as in daily clinical practice.

Patient-Reported Outcome Measures for Health-Related Quality of Life in Patients With Psoriasis

“…We identified 19 psoriasis-specific PROMs, 8 SRQL, and 6 generic PROMs that were developed and/or validated in psoriasis (Table 1 and Table 2). All measures were self-reported except for the Psodisk, which is designed to be used during the patient visit together with the clinician.…”

“…Among psoriasis-specific measures, structural validity was rated sufficient for 9 PROMs (IPSO-10 CTT [US English], 86 IPSO-11 Rasch [US English], 86 IPSO-11 [Italian], 106 NPQ10 [French], 45 NAPPAQOL [German, English, Danish, Japanese, Italian, and Spanish], 72 PQLQ [Turkish], 43 PsoLife [Spanish], 109 PSORIQoL [UK English, US English], 48,49 QualiPso [French] 110 ) and quality of evidence was high for IPSO-11 Rasch, IPSO-11, and PSORIQoL and moderate for the remaining 6 PROMs. Nine measures had insufficient structural validity (IBOP [French], 66 45 NAPPAQOL [German, English, Danish, Japanese, Italian, and Spanish], 72 PsoLife [Spanish], 109 PSORIQOL [UK English, 48 US English 49 ], and QualiPso [French] 110 ) had sufficient internal consistency with high-quality evidence. Internal consistency was insufficient for 3 measures (IPSO-10 CTT [US English], 86 IPSO-16 [ US English], 86 and PQLQ [Turkish] 43 ), with all having a high GRADE score except the PQLQ (very low).…”

Development and evaluation of a psychosocial adaptation questionnaire for women with breast cancer treated with adjuvant endocrine therapy: a single-centre, cross-sectional study in China

“…Based on this preliminary concept, the development of the questionnaire included item development, questionnaire development and evaluation 25 26. This mixed research was conducted from March to June 2021 in China.…”

Development and Evaluation of the Psychosocial Adaptation Questionnaire among Patients with Chronic Skin Disease

“…Based on the preliminary conception, the development of a questionnaire included item development, questionnaire development, and evaluation (Fig. 1) [20, 21].…”