Assessment of stigma in patients with cystic fibrosisReportar como inadecuado

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BMC Pulmonary Medicine

, 14:76

Infectious, Rare and Idiopathic Pulmonary Diseases


BackgroundResearch 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.

MethodsWe 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.

ResultsStigma 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.

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

KeywordsPsychometric Treatment Adherence Validation Focus group Electronic supplementary materialThe online version of this article doi:10.1186-1471-2466-14-76 contains supplementary material, which is available to authorized users.

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Autor: Smita Pakhale - Michael Armstrong - Crystal Holly - Rojiemiahd Edjoc - Ena Gaudet - Shawn Aaron - Giorgio Tasca - William 


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