title: Stigma among patients with lung cancer: a patient-reported measurement model.
abstract: BACKGROUND
  Although stigma may have negative psychosocial and behavioral outcomes for patients with lung cancer, its measurement has been limited. A conceptual model of lung cancer stigma and a patient-reported outcome measure are needed to mitigate these sequelae. This study identified key stigma-related themes to provide a blueprint for item development through a thematic analysis of semi-structured interviews and focus groups with lung cancer patients.
  
  
  METHODS
  Participants were recruited from two outpatient oncology clinics and included (i) 42 lung cancer patients who participated in individual interviews and (ii) 5 focus groups (inclusive of 23 new lung cancer patients). Never smokers, long-term quitters, recent quitters, and current smokers participated. Individual interviews facilitated theme development and a conceptual model of lung cancer stigma, whereas subsequent focus groups provided feedback on the conceptual model. Qualitative data analyses included iterative coding and validation with existing theory.
  
  
  RESULTS
  Two main thematic elements emerged from interviews with lung cancer patients: perceived (felt) stigma and internalized (self) stigma. Discussions of perceived stigma were pervasive, whereas those of internalized stigma were more commonly endorsed among current and recently quit smokers. Participants also discussed maladaptive (e.g., decreased disclosure) and adaptive (e.g., increased advocacy) stigma-related consequences.
  
  
  CONCLUSIONS
  Results indicate widespread acknowledgment of perceived stigma among lung cancer patients but varying degrees of internalized stigma and associated consequences. Next steps for patient-reported outcome measure development are item consolidation, item development, expert input, and cognitive interviews before field testing and psychometric analysis. Future work should address stigma-related consequences and interventions for reducing lung cancer stigma.
authors.affiliation: Harold C. Simmons Cancer Center, UT Southwestern Medical Center, Dallas, TX, USA; Department of Psychiatry, UT Southwestern Medical Center, Dallas, TX, USA; Department of Clinical Sciences, UT Southwestern Medical Center, Dallas, TX, USA.
authors.forename: Heidi A
authors.initials: HA
authors.lastname: Hamann
authors.forename: Jamie S
authors.initials: JS
authors.lastname: Ostroff
authors.forename: Emily G
authors.initials: EG
authors.lastname: Marks
authors.forename: David E
authors.initials: DE
authors.lastname: Gerber
authors.forename: Joan H
authors.initials: JH
authors.lastname: Schiller
authors.forename: Simon J Craddock
authors.initials: SJ
authors.lastname: Lee
mesh_terms: D005260:Female; D017144:Focus Groups; D006801:Humans; D007407:Interviews as Topic; D008175:Lung Neoplasms / Q000523:psychology*; D008297:Male; D008960:Models, Psychological; D012649:Self Concept; D012907:Smoking / Q000523:psychology; D013240:Stereotyping
keywords: cancer; lung cancer; oncology; patient-reported outcomes; stigma