A review of quality of life of patients suffering from Ichthyosis


quality of life, ichtyosis, pain, mental health


Introduction Ichthyoses include a heterogeneous group of skin diseases often characterized by persistent scaling and hyperkeratosis with variable erythema, pruritus, and sweating impairment. The aim of our review was to assess the quality of life in patients with ichtyosis.

Methods In July 2018 we performed a systematic search in the electronic database PubMed (MEDLINE). The MESH term “quality of life” was combined, through the Boolean operator AND with the key word “ichtyosis”. We considered eligible for the systematic review studies written in English.

Results The literature search yielded 63 publications, but 7 studies were included in the review. Studies were published in 2003-2014 and involved a minimum of 10 and a maximum of 235 patients. Authors used 5 types of tools: Dermatology Life Quality Index (DLQI), Dermatitis Family Impact Questionnaire (DFI), Nottingham Health Profile (NHP) questionnaire, Short Form Questionnaire 36 and 12 (SF-36, SF-12).

Many patients reported worse scores than general population. Patients referred physical problems related to pain (which negatively influenced the mobility).

Conclusions Ichthyosis considerably impaired the QoL, especially for paediatric patients. Further studies and efforts should be done to manage and treat the pain.



1. Marukian, N.V. and K.A. Choate, Recent advances in understanding ichthyosis pathogenesis. F1000Res, 2016. 5.
2. Thyssen, J.P., E. Godoy-Gijon, and P.M. Elias, Ichthyosis vulgaris: the filaggrin mutation disease. Br J Dermatol, 2013. 168(6): p. 1155-66.
3. De, D. and S. Handa, Filaggrin mutations and the skin. Indian J Dermatol Venereol Leprol, 2012. 78(5): p. 545-51.
4. V. Oji, G.T., M. Akiyama, C. Blanchet Bardon, C. Bodemer, E. Bourrat, et al. , Revised nomenclature and classification of inherited ichthyosis: results of the first ichthyosis consensus conference in Soreze 2009 J Am Acad Dermatol, 2010. 63: p. 607-641.
5. Hernandez-Martin, A., et al., A systematic review of clinical trials of treatments for the congenital ichthyoses, excluding ichthyosis vulgaris. J Am Acad Dermatol, 2013. 69(4): p. 544-549 e8.
6. Vega Almendra, N. and L. Aranibar Duran, [Hereditary ichthyosis: A diagnostic and therapeutic challenge]. Rev Chil Pediatr, 2016. 87(3): p. 213-23.
7. Yoneda, K., Inherited ichthyosis: Syndromic forms. J Dermatol, 2016. 43(3): p. 252-63.
8. Gregory D, J.R., Pratt G, Watts M, Whatmore S. , The Quality of Life. The Dictionary of Human Geography. 2009, Oxford: John Wiley & Sons.
9. Veenhoven, R., Quality of Life and happiness: not quite the same. Salute e qualità della vita, 2001: p. 67-95.
10. Ganemo, A., et al., Quality of life in adults with congenital ichthyosis. J Adv Nurs, 2003. 44(4): p. 412-9.
11. Ganemo, A., et al., Health-related quality of life among patients with ichthyosis. Eur J Dermatol, 2004. 14(1): p. 61-6.
12. Ganemo, A., Quality of life in Swedish children with congenital ichthyosis. Dermatol Reports, 2010. 2(1): p. e7.
13. Kamalpour, L., et al., Resource utilization and quality of life associated with congenital ichthyoses. Pediatr Dermatol, 2011. 28(5): p. 512-8.
14. Dreyfus, I., et al., IQoL-32: a new ichthyosis-specific measure of quality of life. J Am Acad Dermatol, 2013. 69(1): p. 82-7.
15. Mazereeuw-Hautier, J., et al., Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups. Br J Dermatol, 2012. 166(3): p. 646-8.
16. Dreyfus, I., et al., Factors associated with impaired quality of life in adult patients suffering from ichthyosis. Acta Derm Venereol, 2014. 94(3): p. 344-6.
17. Finlay, A.Y., Quality of life assessments in dermatology. Semin Cutan Med Surg, 1998. 17(4): p. 291-6.
18. Dermatology, C.U.-D.o. Dermatology Quality of Life Index (DLQI) 20 July 2018]; Available from: http://sites.cardiff.ac.uk/dermatology/quality-of-life/dermatology-quality-of-life-index-dlqi/.
19. Lawson V, L.-J.M., Finlay AY, et al. , The family impact of childhood atopic dermatitis: the Dermatitis Family Impact Questionnaire. Br J Dermatol 1998. 138: p. 107-13.
20. I., W., NHP Manual. Svensk version av Nottingham Health Profile – ett fra°geformula¨r som ma¨ter ha¨lsorelaterad liv-skvalitet (Swedish version). . 1992, Gothenburg: OFTA Grafiska.
21. Messina, G., et al., Italian medical students quality of life: years 2005-2015. Ann Ig, 2016. 28(4): p. 245-51.
22. Nante, N., et al., Quality of life in refugees and asylum seekers in Italy: a pilot study. Ann Ist Super Sanita, 2016. 52(3): p. 424-427.
23. Levorato, S., et al., Health status of homeless persons: a pilot study in the Padua municipal dorm. Ann Ig, 2017. 29(1): p. 54-62.
24. Sartorius, N., Stigmatized illnesses and health care. Croat Med J, 2007. 48(3): p. 396-7.
25. McCarberg, B.H., et al., The impact of pain on quality of life and the unmet needs of pain management: results from pain sufferers and physicians participating in an Internet survey. Am J Ther, 2008. 15(4): p. 312-20.
26. Niv, D. and S. Kreitler, Pain and quality of life. Pain Pract, 2001. 1(2): p. 150-61.
27. Juliana Catucci Boza, N.G., Priscilla Machado, Roberta Horn, Amanda Fabbrin, Tania Cestari, Quality of Life Impairment in Children and Adults with Vitiligo: A Cross-Sectional Study Based on Dermatology-Specific and Disease-Specific Quality of Life Instruments. Dermatology, 2016. 232: p. 619-625.