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Body Image Disturbance in Surgically Treated Head and Neck Cancer Patients: A Patient-Centered Approach.

OBJECTIVE: To promote patient-centered oncology care through an in-depth analysis of the patient experience of body image disturbance (BID) following surgery for head and neck cancer (HNC).

STUDY DESIGN: Qualitative methods approach using semistructured key informant interviews.

SETTING: Academic medical center.

SUBJECTS AND METHODS: Participants with surgically treated HNC underwent semistructured key informant interviews and completed a sociodemographic survey. Recorded interviews were transcribed, coded, and analyzed using template analysis to inform creation of a conceptual model.

RESULTS: Twenty-two participants with surgically treated HNC were included, of whom 16 had advanced stage disease and 15 underwent free tissue transfer. Five key themes emerged characterizing the participants' lived experiences with BID following HNC treatment: personal dissatisfaction with appearance, other-oriented appearance concerns, appearance concealment, distress with functional impairments, and social avoidance. The participant's perceived BID severity was modified by preoperative patient expectations, social support, and positive rational acceptance. These 5 key themes and 3 experiential modifiers form the basis of a novel, patient-centered conceptual model for understanding BID in HNC survivors.

CONCLUSION: A patient-centered approach to HNC care reveals that dissatisfaction with appearance, other-oriented appearance concerns, appearance concealment, distress with functional impairments, and social avoidance are key conceptual domains characterizing HNC-related BID. Recognition of these psychosocial dimensions of BID in HNC patients can inform development of HNC-specific BID patient-reported outcome measures to facilitate quantitative assessment of BID as well as the development of novel preventative and therapeutic strategies for those at risk for, or suffering from, BID.

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