<p>Parents of children with skin conditions face an additional caregiving burden and significant health-related quality of life (HRQoL) impairments. This study aimed to (1) test the psychometric properties of the German version of the Family Dermatology Life Quality Index (F-DLQI) in parents of infants and toddlers with any dermatological diagnosis and (2) examine the associations between the parents’ and their children’s HRQoL. Parents (<i>n</i> = 126) of 0- to 4-year-old children with any skin disease filled in the F-DLQI and an instrument assessing their children’s HRQoL, the Infants and Toddlers Dermatology Quality of Life questionnaire (InToDermQoL). The attending physician provided clinical information. Internal consistency, 2-week test–retest reliability, measurement error, and known-groups validity across severity levels of the F-DLQI were examined. Associations between the parents’ and their children’s HRQoL were tested using regression analysis. Internal consistency and test–retest reliability of the F-DLQI were good (Cronbach’s <i>α</i> = 0.896, ICC = 0.867), and construct validity was confirmed. Parents’ HRQoL (F-DLQI) and children’s current complaints as reported by their parents, but not physician-rated disease severity, were associated with children’s HRQoL. <i>Conclusion</i>: The German version of the F-DLQI is a valid and reliable tool in measuring the HRQoL of parents of children ≤ 4 years with dermatological conditions. The majority of the sample had atopic dermatitis, limiting the generalizability of the findings. Future studies need to evaluate its structural validity and responsiveness. Burden experienced by parents should be taken into account by care providers to prevent parental stress from becoming chronic and negatively affecting the child’s HRQoL.<Table Float="No" ID="Taba"> <tgroup cols="2"> <colspec align="left" colname="c1" colnum="1" /> <colspec align="left" colname="c2" colnum="2" /> <tbody> <row> <entry align="left" nameend="c2" namest="c1"> <p>What is Known:</p> </entry> </row> <row> <entry align="left" nameend="c2" namest="c1"> <p>•&#xa0;<i>Pediatric skin diseases can have a great impact on the entire family and impose additional burdensome caregiving demands</i></p> </entry> </row> <row> <entry align="left" nameend="c2" namest="c1"> <p>•<i>&#xa0;The Family Dermatology Life Quality Index (F-DLQI) is the first dermatology‐specific questionnaire assessing the adverse impact of skin conditions on the health-related quality of life (HRQoL) of patients’ family members</i></p> </entry> </row> <row> <entry align="left" nameend="c2" namest="c1"> <p>What is New:</p> </entry> </row> <row> <entry align="left" nameend="c2" namest="c1"> <p><i>•&#xa0;This is the first cross-cultural adaptation and validation of the F-DLQI for Germany, proving its validity and reliability</i></p> </entry> </row> <row> <entry align="left" nameend="c2" namest="c1"> <p><i>•&#xa0;The child’s HRQoL is not only associated with current complaints, like itch and sleeplessness, but also their parents’ HRQoL</i></p> </entry> </row> </tbody> </tgroup> </Table></p>

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Family dermatology life quality index (F-DLQI): German validation and applicability to parents of infants and toddlers with dermatological conditions

  • Juliane Traxler,
  • Neuza da Silva Burger,
  • Matthias Augustin,
  • Hagen Ott,
  • Sanna Hoffmann,
  • Regina Fölster-Holst,
  • Maria Baumeister,
  • Petra Staubach,
  • Rachel Sommer

摘要

Parents of children with skin conditions face an additional caregiving burden and significant health-related quality of life (HRQoL) impairments. This study aimed to (1) test the psychometric properties of the German version of the Family Dermatology Life Quality Index (F-DLQI) in parents of infants and toddlers with any dermatological diagnosis and (2) examine the associations between the parents’ and their children’s HRQoL. Parents (n = 126) of 0- to 4-year-old children with any skin disease filled in the F-DLQI and an instrument assessing their children’s HRQoL, the Infants and Toddlers Dermatology Quality of Life questionnaire (InToDermQoL). The attending physician provided clinical information. Internal consistency, 2-week test–retest reliability, measurement error, and known-groups validity across severity levels of the F-DLQI were examined. Associations between the parents’ and their children’s HRQoL were tested using regression analysis. Internal consistency and test–retest reliability of the F-DLQI were good (Cronbach’s α = 0.896, ICC = 0.867), and construct validity was confirmed. Parents’ HRQoL (F-DLQI) and children’s current complaints as reported by their parents, but not physician-rated disease severity, were associated with children’s HRQoL. Conclusion: The German version of the F-DLQI is a valid and reliable tool in measuring the HRQoL of parents of children ≤ 4 years with dermatological conditions. The majority of the sample had atopic dermatitis, limiting the generalizability of the findings. Future studies need to evaluate its structural validity and responsiveness. Burden experienced by parents should be taken into account by care providers to prevent parental stress from becoming chronic and negatively affecting the child’s HRQoL.

What is Known:

• Pediatric skin diseases can have a great impact on the entire family and impose additional burdensome caregiving demands

 The Family Dermatology Life Quality Index (F-DLQI) is the first dermatology‐specific questionnaire assessing the adverse impact of skin conditions on the health-related quality of life (HRQoL) of patients’ family members

What is New:

• This is the first cross-cultural adaptation and validation of the F-DLQI for Germany, proving its validity and reliability

• The child’s HRQoL is not only associated with current complaints, like itch and sleeplessness, but also their parents’ HRQoL