Assessment of stigma in patients with cystic fibrosis

BMC Pulm Med. 2014 May 1;14:76. doi: 10.1186/1471-2466-14-76.


Background: Research that explores stigma in Cystic Fibrosis (CF) is limited. Productive cough, repeated lung infections, and periods of serious illness requiring hospitalizations are among common symptoms of CF. These symptoms may cause a negative perception by others. We developed a CF-specific Stigma Scale and tested its psychometric properties.

Methods: We conducted a focus group with 11 participants including adult patients with CF (n = 5) and their informal caregivers (n = 6). The thematic content of the focus group was analyzed to find key themes. We developed a CF-specific Stigma Scale and assessed its psychometric properties in a 3-month prospective cohort study of adult CF outpatients (n = 45).

Results: Stigma emerged as consistent concern for people living and caring for those with CF, affecting both patients' lives and health through the focus group. Using the newly developed CF Stigma scale, the mean baseline score was 16.6 (SD = 4.5, Range = 10-25). The CF Stigma Scale demonstrated robust psychometric properties: 1) Internal consistency: α = 0.79; 2) Mean inter-item correlation: 0.30 with good test-retest reliability; 3) Convergent validity: Positive associations with depression, severity of CF symptoms and anxiety; negative associations with validated quality of life scores were observed.

Conclusions: Stigma is measurable and significantly impacts the lives of CF patients. Further research should investigate the role of stigma in patients living with CF.

Publication types

  • Evaluation Study
  • Observational Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Anxiety / diagnosis
  • Anxiety / epidemiology
  • Cross-Sectional Studies
  • Cystic Fibrosis / diagnosis*
  • Cystic Fibrosis / psychology*
  • Depression / diagnosis
  • Depression / epidemiology
  • Female
  • Focus Groups
  • Humans
  • Male
  • Ontario
  • Prospective Studies
  • Psychometrics
  • Quality of Life*
  • Reproducibility of Results
  • Severity of Illness Index
  • Social Stigma*
  • Surveys and Questionnaires
  • Young Adult