Development and Validation of Skindex-Teen, a Quality-of-Life Instrument for Adolescents With Skin Disease

Abstract

Setting: Academic pediatric dermatology practice. Patients: A total of 205 patients between the ages of 12 and 17 years with a skin condition. Main Outcome Measures: Participants completed the Skindex-Teen questionnaire, reported sociodemographic data, and answered clinical questions at enrollment. Four weeks later, they completed Skindex-Teen and responded to clinical questions again. Forty patients also completed Skindex-Teen 48 hours after baseline. Results: Of 205 patients, 200 (97.6%) completed all enrollment materials; 125 (62.5%) of these returned follow-up materials, of which 115 (57.5%) were complete. Twenty-three of 40 participants (57.5%) completed the 48hour-after-initial-answers materials. The mean (SD) age of the patients was 15.3 (1.4) years (range, 12.9-18.0 years). Approximately half reported their skin condition as poor (26 [13.0%]) or fair (67 [33.5%]); most rated their general health as very good (62 [31.0%]) or excellent (80 [40.0%]). The dimensionality of the items was evaluated using factor analysis; results suggested 2 factors, termed physical symptoms (5 items) and psychosocial functioning (16 items). Both scales demonstrated excellent internal consistency. All item-scale reliabilities were greater than 0.4. Fit of items to the measurement model was supported by Rasch analysis. Test-retest reliability was supported by intraclass correlation coefficients (0.82-0.94) for total scores, physical symptoms, and psychosocial functioning scales. At 4 weeks, 16 (13.9%) reported worsening of their skin condition, 57 (19.6%) reported it had remained unchanged, and 42 (36.5%) reported improvement. Significant mean differences were present between the improved and worsened groups for the psychosocial functioning scale and total scores. Conclusions: These data provide evidence of construct, content, and face validity for Skindex-Teen, a new quality-of-life instrument for adolescents with skin disease. Test-retest reliability was verified, and responsiveness at 4 weeks was shown for total scores and the psychosocial functioning scale scores.

Systematic Review of Health-Related Quality of Life in Adolescents with Psoriasis

“…The overall score can be broken down into two subscales pertaining to physical symptoms (5 items) and psychosocial function (16 items). The validation study by Smidt et al [40] confirmed strong face validity and test-retest reliability at 4 weeks by looking at 205 dermatological patients from ages 12 to 17 years (mean age 15.3 ± 1.4 years); 11 of the patients had psoriasis who reported impairment in physical symptoms, especially itching and pain, appearance and impact on clothing choices, self-esteem and self-image [31,40] . Unfortunately, to these authors' knowledge this questionnaire has not appeared in many other publications.…”

Family burden in inherited ichthyosis: creation of a specific questionnaire

“…We decided to develop a specific Family Burden Ichthyosis questionnaire (“FBI”) according to the rigorous methodology of construction of QoL questionnaires (Figure 1) by two steps: creation of the questionnaire and validation [17-19]. This methodology required a multidisciplinary team involved in the care of the patients and their families.…”

The Evolution of Quality of Life Assessment and Use in Dermatology

“…It remains the only dermatology-specific QoL instrument for this age group. Two dermatology-specific instruments for adolescents with skin diseases were developed [19, 20] but have not yet been used in other published studies. Several disease-specific instruments (predominantly atopic dermatitis-specific) for children and their parents were developed.…”