C Blome1, A Costanzo2, E Dauden3, C Ferrandiz4, G Girolomoni5, R Gniadecki6, L Iversen7, A Menter8, K Michaelis-Wittern9, A Morita10, H Nakagawa11, K Reich12, M Augustin13. 1. Institute for Health Services Research in Dermatology and Nursing (IVDP), German Center of Health Services Research in Dermatology (CVderm), University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany. c.blome@uke.de. 2. Dermatology Unit, NESMOS Department, Department of Dermatology, University of Rome 'Tor Vergata', Rome, Italy. 3. Department of Dermatology, Hospital Universitario de la Princesa, Madrid, Spain. 4. Servicio de Dermatología, Hospital Universitari Germans Trias i Pujol, Universitat Autònoma de Barcelona, Barcelona, Spain. 5. Clinica Dermatologica, Università di Verona, Verona, Italy. 6. Bispebjerg Hospital, University of Copenhagen, Copenhagen NV, Denmark. 7. Department of Dermatology, Aarhus University Hospital, Aarhus C, Denmark. 8. Baylor Research Institute, Baylor University Medical Center, Dallas, TX, USA. 9. SCIderm GmbH, Hamburg, Germany. 10. Department of Geriatric and Environmental Dermatology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan. 11. Department of Dermatology, The Jikei University, School of Medicine, Tokyo, Japan. 12. Dermatologikum Hamburg, Hamburg, Germany. 13. Institute for Health Services Research in Dermatology and Nursing (IVDP), German Center of Health Services Research in Dermatology (CVderm), University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany.
Abstract
PURPOSE: Patient-centered health care implies that medical decisions are made jointly by physician and patient, based on patient needs. Aims were to (a) identify treatment goals for a new questionnaire on patient needs and benefits in nail psoriasis treatment; (b) analyze the importance of treatment goals in patients with nail psoriasis in general and in defined subgroups; and (c) determine the association between overall treatment goal importance and quality of life. METHODS: The study comprised the following steps: qualitative survey on needs and burdens in 120 patients; development of items by an interdisciplinary expert group; item testing in 55 patients in four countries; revision of the questionnaire and assessment in 203 patients in six countries (Germany, Denmark, Italy, Spain, USA, Japan). The percentage of patients rating the goals as 'quite/very important' was compared between various patient subgroups. RESULTS: Based on 692 free-text statements, 26 items were developed which were reduced to 24 items after pilot testing. Each of these treatment goals applied to the majority of patients in the multi-center study. Goal importance increased with severity of nail psoriasis, but not with age or disease duration. Manual dexterity and social interaction were of particular importance. Goal importance and quality of life were associated, but not redundant (r = 0.612, p < 0.001). CONCLUSIONS: Patients with nail psoriasis have manifold and specific treatment goals. Goal importance is a construct different from disease-specific quality of life and should be assessed separately. The new questionnaire can support goal setting in clinical practice.
PURPOSE:Patient-centered health care implies that medical decisions are made jointly by physician and patient, based on patient needs. Aims were to (a) identify treatment goals for a new questionnaire on patient needs and benefits in nail psoriasis treatment; (b) analyze the importance of treatment goals in patients with nail psoriasis in general and in defined subgroups; and (c) determine the association between overall treatment goal importance and quality of life. METHODS: The study comprised the following steps: qualitative survey on needs and burdens in 120 patients; development of items by an interdisciplinary expert group; item testing in 55 patients in four countries; revision of the questionnaire and assessment in 203 patients in six countries (Germany, Denmark, Italy, Spain, USA, Japan). The percentage of patients rating the goals as 'quite/very important' was compared between various patient subgroups. RESULTS: Based on 692 free-text statements, 26 items were developed which were reduced to 24 items after pilot testing. Each of these treatment goals applied to the majority of patients in the multi-center study. Goal importance increased with severity of nail psoriasis, but not with age or disease duration. Manual dexterity and social interaction were of particular importance. Goal importance and quality of life were associated, but not redundant (r = 0.612, p < 0.001). CONCLUSIONS:Patients with nail psoriasis have manifold and specific treatment goals. Goal importance is a construct different from disease-specific quality of life and should be assessed separately. The new questionnaire can support goal setting in clinical practice.
Entities:
Keywords:
Nail psoriasis; Patient preferences; Quality of life; Shared decision-making; Treatment goals
Authors: M Augustin; C Blome; A Costanzo; E Dauden; C Ferrandiz; G Girolomoni; R Gniadecki; L Iversen; A Menter; K Michaelis-Wittern; A Morita; H Nakagawa; K Reich Journal: Br J Dermatol Date: 2014-03 Impact factor: 9.302
Authors: Claire F Snyder; Neil K Aaronson; Ali K Choucair; Thomas E Elliott; Joanne Greenhalgh; Michele Y Halyard; Rachel Hess; Deborah M Miller; Bryce B Reeve; Maria Santana Journal: Qual Life Res Date: 2011-11-03 Impact factor: 4.147
Authors: Marloes E van Muijen; S Atalay; L J van Vugt; L M D Vandermaesen; J M P A van den Reek; E M G J de Jong Journal: Drugs Real World Outcomes Date: 2021-03-28