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Objective: We aimed 1) to evaluate the effect of keloid disease on health related quality of life (HRQL) and 2) to identify predictors of burden.
Methods: This cross-sectional study included 106 adult keloid patients without other skin disease, who completed a self-administered online survey, comprising a scar assessment scale (POSAS) and three HQRL measures: Skindex-29, SF-36 and EQ-5D-5L.
Results: Keloid disease had a large impact on the emotional wellbeing of patients. Almost half of the patients (and 60% of the females) had severe emotional symptoms and about a quarter reported severe problems on the symptomatic and functional scale of the Skindex-29 questionnaire (disease specific instrument). Keloid patients scored significantly lower on the SF-36 (generic instrument) dimensions bodily pain, vitality, and social functioning as well as on the mental component summary, meaning keloid patients reported a worse HRQL. This in contrast to the physical component summary, which was similar to that of the reference population. Even the EQ-5D-5L index score (utility instrument) was lower (0.80 SD 0.23 compared to 0.87 SD 0.18) as assessed in a Dutch reference population.
The HRQL reduction is comparable with the burden of major diseases like psoriasis, dermatitis, arthritis, and cancer. Itching and painful keloids were associated with the largest HRQL impairment, while cosmetic issues seem less related.
Limitations: all patients were recruited from academic hospitals.
Conclusion: Keloid disease relates to a low mental and emotional HRQL. Itching and pain were the strongest predictors for this burden, while cosmetic factors seem less important. These findings supports priority setting, as cosmetic issues can be interpreted as ‘pleasure seeking, instead of ‘pain avoidance’, which relates to its current lower priority in health policy decision making. Patients with keloids require access to effective treatment alleviating physical symptoms.