Preliminary evaluation of the reliability and validity of the Shame and Stigma Scale in head and neck cancer.

BACKGROUND Facial disfigurement from head and neck cancer can lead to the development of shame and a perception of stigma. We sought to develop the Shame and Stigma Scale (SSS) to measure this. Items were administered to 104 patients with squamous cell carcinoma of the oral cavity, together with measures of quality of life and adaptation. Exploratory factor analysis and item response theory (IRT) models assessed its psychometric properties. RESULTS A 20-item SSS had a Cronbach's alpha of 0.94 and 4 factors: shame with appearance, sense of stigma, regret, and speech/social concerns. These factors show satisfactory internal validity, convergent validity with the Functional Assessment of Cancer Therapy-General (FACT-G) and Functional Assessment of Cancer Therapy-Head and Neck (FACT-H&N), Demoralization Scale and Patient Health Questionnaire (PHQ) Depression, and divergent validity with the Social Desirability Scale. The items displayed desirable properties in factor-specific (IRT) models. CONCLUSION Further validation studies are worthwhile to confirm this factor structure, reliability, and validity, and generalizability to all head and neck cancers.