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The Capital Region of Denmark - a part of Copenhagen University Hospital

Patient-relevant needs and treatment goals in nail psoriasis

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  • 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
  • M Augustin
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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.

Original languageEnglish
JournalQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
Issue number5
Pages (from-to)1179-88
Number of pages10
Publication statusPublished - May 2016

    Research areas

  • Adult, Aged, Aged, 80 and over, Denmark, Female, Germany, Goals, Humans, Italy, Japan, Male, Middle Aged, Nail Diseases, Nails, Needs Assessment, Patient-Centered Care, Psoriasis, Quality of Life, Spain, Surveys and Questionnaires, Young Adult, Journal Article, Multicenter Study, Research Support, Non-U.S. Gov't

ID: 49767539