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The three dimensions of skin disease burden: ‘now’, ‘long term’ and ‘family’

There are three dimensions of skin disease burden: the impact on a patient’s quality of life (QoL) now, the long-term impact and the impact on the partner and family. Tjokrowidjaja et al. have described the Treatment in Autoimmune Blistering Disease Quality of Life (TABQOL) questionnaire, an example of measuring ‘impact now’, specifically the impact of treatments used for autoimmune bullous diseases. This article is important because it is one of the first attempts to focus on the effects of treatment on QoL. The main focus of QoL research has been in understanding better the current impact of disease on patients’ lives. This ‘first dimension – now’ of the burden of disease still provides further challenges. Although QoL research places the patient’s experience centre stage, questionnaires are still developed with the practical needs of clinicians in mind, with a ‘onefits-all’ mindset. The individual experiences of patients all differ, not only in the range of life issues that are affected, but also in the relative importance of each of these issues to the patient. So what is needed is a method to record an individual’s personal QoL impairment that could then be used to assess or monitor change in that person. The Patient Generated Index technique pointed the way: an electronic version of such a method might be sufficiently user friendly to use routinely. The ‘second dimension – long term’ has recently been highlighted with the novel concepts of Major Life Changing Decisions and, in psoriasis, of Cumulative Life Course Impairment. Interest in this dimension comes from recognition that having skin disease not only causes problems ‘now’, but can also profoundly affect the course of a person’s life. Such information will add weight to arguments for treating skin disease early and aggressively. The ‘third dimension – family’ is the important but largely unrecognized impact that having a skin disease has on the lives of the patient’s partner and family members. This can be measured with the Family Dermatology Life Quality Index, with a disease-specific measure or with a new generic measure that can be used across all specialities, the Family Reported Outcome Measure (FROM-16©). But do we really need yet another QoL questionnaire in dermatology? Yes, because some conditions and some situations have specific impacts on patients’ QoL that may not be captured by generic dermatology measures such as the Dermatology Life Quality Index or Skindex. Examples include the impact of skin cancer, recently addressed by a new measure, and the side-effects of treatments of bullous diseases, addressed now by TABQOL. However, data from disease-specific measures, or from treatment-specific measures such as TABQOL, cannot be compared across different diseases. If such data are required, then a generic measure needs to be used. Remember that for a QoL measurement method to be really useful in the clinic, we need to be able to interpret the meaning of scores. Most QoL tools in dermatology (especially those at an early stage of their development, such as TABQOL) do not yet have such information available. And try to remember, when thinking about a patient’s QoL, to put on your 3-D glasses and think of the long-term and family impacts.