A qualitative analysis of identity and goals in patients with deformities: preparation for an evidence-based advocacy for a vulnerable population.

INTRODUCTION: Economically and socially vulnerable patients with deformities are likely to live a marginalized life, reducing their quality of life and societal participation. An evidence-based approach is needed for these patients who may not be able to advocate for themselves. The objective of this study is to identify important aspects of the perceived identity of adult patients with deformities. METHODS: This retrospective qualitative analysis is of applicant responses to an intake questionnaire for Fresh Start Surgical Gifts, a charitable reconstructive surgery organization serving children and adults with deformities. Five open-ended questions were analyzed and grouped into 2 broad categories: Identity and Goals. Keywords were identified by an online survey website and subjective judgment of the investigators. Keywords were then combined into broader themes. RESULTS: Seventy respondents with a mean age of 24.79 (median 23) between 1992 and 2011 were analyzed. Social and professional issues were the most frequently occurring themes among Identity and Goals questions. CONCLUSION: The current identity of patients with deformities centers on social aspects of their lives, rather than a career or profession, yet they do hold both professional and social aspirations. This research will guide the development of an objective tool to measure patient-reported impact and outcomes of reconstructive plastic surgery.