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• W1512160531 abstract "We became aware that the chronic skin condition of some patients influenced their Major Life Changing Decisions (MLCD). Patients reported for example that they had decided not to have children, or to retire early. This alerted us to consider that diseases in other specialities might have a similar impact on MLCDs. Up to now, QoL research has focused on current impact but we wished to understand the long-term impact of disease on patients resulting from disease influence on MLCDs. The aim of this study was to define and describe the concept of MLCDs and develop and validate a method to measure this impact. Chronic skin disease patients were invited to take part in a semi-structured interview or focus group discussion. Postal survey packs were sent to patients from six other medical specialities. Interviews were recorded and transcribed verbatim along with survey responses. Nvivo 8 qualitative software was used for content analysis and emerging themes were grouped into core MLCDs. Information was gathered from over 300 patients. MLCDs reported mainly fell under the domains of education, job/ work, relationships, social and physical. For example, two thirds of dermatology patients reported influence on their decision related to career choice. Over half reported influence related to relationships (marriage, divorce, separation) and a fifth on whether or not to have children. Over 80% of patients who returned their surveys reported influence on at least one MLCD (range 1–9). This information was used for the development of the Major Life Changing Decisions Profile (MLCDP). Fortyeight statements were generated but reduced to 45 statements. A panel of judges rated each item for language clarity, relevance, completeness and scaling as part of content validation. There was good agreement among the panel members. Changes suggested by the panel were implemented, resulting in a new 41-item version of the MLCDP, covering five MLCD domains (education, job/career, family/relationships, social and physical) for further validation. This study establishes that chronic skin diseases influence MLCDs. Influence on MLCDs may contribute to the concept of Cumulative Life Course Impairment described in psoriasis by Kimball et al. (2010). Better understanding of this area is vital to long-term patient management. If considered alongside the “traditional” quality of life domains of current “physical”, “psychological” and “social”, the novel “MLCD” domain could broaden the way we understand and measure the burden of chronic skin disease over time." @default.
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• W1512160531 date "2011-01-01" @default.
• W1512160531 modified "2023-09-25" @default.
• W1512160531 title "The influence of skin disease on major life changing decisions [Abstract]" @default.
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