Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology-specific instruments

Atopic dermatitis is a common disease of increasing prevalence. Affected individuals must cope with a significant psychosocial burden, in addition to dealing with the medical aspects of the disease. Furthermore, because this is primarily a disease of childhood, family members, especially parents, are also affected by the condition. Individuals and family members are burdened with time-consuming treatment regimens for the disease, as well as dietary and household changes. The financial impact of atopic dermatitis on families can also be great. Moreover, the cost to society is significant, with estimates ranging from less than 100 dollars to more than 2000 dollars per patient per year. It is estimated that the direct cost of atopic dermatitis in the United States alone is almost 1 billion dollars per year. Reducing the onus of this disease must take into account the full breadth of its burden. Targeting parents and caregivers with education and psychosocial support can decrease family and personal burden, which in turn may decrease the cost of treating the condition because of better medical, psychosocial, and family outcomes.

The measurement of health-related quality of life (HRQOL) is increasingly important in patients with skin diseases. Despite the availability of a variety of instruments and new psychometric techniques, there is no consensus as to which HRQOL instruments are to be preferred in dermatology. The objective of this review is to evaluate the generic HRQOL measures (i.e., health profiles) that have been used in dermatology (Short-Form-36 (SF-36) and -12, NHP, SIP, World Health Organization Quality of Life (WHOQOL)-100 and -BREF) and all dermatology-specific HRQOL measures (Dermatology Life Questionnaire Index, Skindex-29, -16, and -17, Dermatology Quality of Life Scales, and Dermatology-Specific Quality of Life). Criteria for evaluation were adapted from existing guidelines and included conceptual and measurement model, reliability, validity, responsiveness, item functioning, meaning of scores, administrative burden, respondent burden, the availability of alternative forms, and of cultural and language adaptations. Furthermore, an overview of skin diseases in which the included HRQOL tools have been used is presented. Although the selection of the appropriate HRQOL instrument remains a trade-off between various psychometric properties and research objectives, for now, we recommend the combination of SF-36 and Skindex-29 as the instruments of choice in dermatology. Promising new instruments for future research are the WHOQOL and the Skindex-17.

Skin diseases are known to have a major impact on the lives of patients and their families. Many instruments are available to measure the health-related quality of life (HRQoL) of patients but no measure has been developed so far to quantify the secondary impact on family members of the patients.