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      A review of quality of life of patients suffering from ichthyosis


      Journal of Preventive Medicine and Hygiene

      Pacini Editore Srl

      Quality of life, Ichtyosis, Pain, Mental health

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          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 ichthyosis.


          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 “ichthyosis”. We considered eligible for the systematic review studies written in English.


          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).


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

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          Most cited references 24

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          Revised nomenclature and classification of inherited ichthyoses: results of the First Ichthyosis Consensus Conference in Sorèze 2009.

          Inherited ichthyoses belong to a large, clinically and etiologically heterogeneous group of mendelian disorders of cornification, typically involving the entire integument. Over the recent years, much progress has been made defining their molecular causes. However, there is no internationally accepted classification and terminology. We sought to establish a consensus for the nomenclature and classification of inherited ichthyoses. The classification project started at the First World Conference on Ichthyosis in 2007. A large international network of expert clinicians, skin pathologists, and geneticists entertained an interactive dialogue over 2 years, eventually leading to the First Ichthyosis Consensus Conference held in Sorèze, France, on January 23 and 24, 2009, where subcommittees on different issues proposed terminology that was debated until consensus was reached. It was agreed that currently the nosology should remain clinically based. "Syndromic" versus "nonsyndromic" forms provide a useful major subdivision. Several clinical terms and controversial disease names have been redefined: eg, the group caused by keratin mutations is referred to by the umbrella term, "keratinopathic ichthyosis"-under which are included epidermolytic ichthyosis, superficial epidermolytic ichthyosis, and ichthyosis Curth-Macklin. "Autosomal recessive congenital ichthyosis" is proposed as an umbrella term for the harlequin ichthyosis, lamellar ichthyosis, and the congenital ichthyosiform erythroderma group. As more becomes known about these diseases in the future, modifications will be needed. We have achieved an international consensus for the classification of inherited ichthyosis that should be useful for all clinicians and can serve as reference point for future research. Copyright © 2010 American Academy of Dermatology, Inc. All rights reserved.
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            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.

            Pain is one of the most common medical complaints, but despite its prevalence, many individuals still suffer with unrelieved or undertreated pain. This marketing research survey was designed to determine the physical, psychological, and economic impact pain has on the lives of individuals suffering with pain and to identify the unmet needs of patients who have taken opioid medications to treat their pain. In addition, the survey sought to address the challenges physicians face when treating patients with pain. Pain sufferers were recruited through e-mail invitation to an Internet survey; 173,854 invitations were sent out, 22,018 people responded (12.7%), and 606 met the criteria for inclusion in the survey as pain sufferers. Of these, 359 people had moderate to moderately severe chronic pain and 247 people had moderate to moderately severe acute pain. Additionally, physicians currently treating pain were recruited through e-mail and postal mail invitations and 492 met eligibility criteria: 241 specialists (orthopedic or general surgeons, pain specialists or anesthesiologists), 125 primary care, and 126 emergency medicine physicians. Results of this survey supported what many physicians observe in their practice and hear from their patients, that pain has a negative impact on daily activities in the majority of pain sufferers. Many chronic pain sufferers reported that pain had deleterious effects on their mental health, employment status, sleep, and personal relationships. The impact of pain on patient quality of life and the unmet needs in pain management were recognized by the majority of physicians surveyed, with inadequate pain control, end-of-dose pain, and side effects associated with increased dosing reported as negative factors influencing their choice of pain medication. In conclusion, effective communication between physicians and patients is encouraged to not only improve overall pain management but also to establish shared treatment goals with functional outcomes.
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              Quality of life assessments in dermatology.

               A. Finlay (1998)
              This review describes the many ways in which skin disease can adversely affect the quality of life (QOL) of patients with skin disease. Measurement of this impact is required for clinical and health service research, and may be valuable in clinical practice and in the evaluation of new drug therapy. Methods of measuring QOL in dermatology are described. These include general health measures, dermatology specific measures such as the Dermatology Life Quality Index (DLQI), the Dermatology Quality of Life Scales (DQOLS), the Dermatology Specific Quality of Life (DSQL), and Skindex, and disease specific measures such as the Psoriasis Disability Index (PDI), the Psoriasis Life Stress Inventory (PLSI), and the Acne Disability Index (ADI). Instruments used for measuring QOL in children (the Children's Dermatology Life Quality Index (CDLQI)) and for measuring the impact of atopic dermatitis on the families of affected children (the Dermatitis Family Impact (DFI) questionnaire) are described. Reasons are given for the use of such measures in clinical practice.

                Author and article information

                J Prev Med Hyg
                J Prev Med Hyg
                Journal of Preventive Medicine and Hygiene
                Pacini Editore Srl
                06 October 2020
                September 2020
                : 61
                : 3
                : E374-E378
                Department of Molecular & Developmental Medicine, University of Siena , Italy
                Author notes
                Correspondence: Gianmarco Troiano, Department of Molecular & Developmental Medicine, University of Siena, Italy - E-mail: gianmarco.troiano@ 123456student.unisi.it
                ©2020 Pacini Editore SRL, Pisa, Italy

                This is an open access article distributed in accordance with the CC-BY-NC-ND (Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International) license. The article can be used by giving appropriate credit and mentioning the license, but only for non-commercial purposes and only in the original version. For further information: https://creativecommons.org/licenses/by-nc-nd/4.0/deed.en

                Page count
                Figures: 1, Tables: 1, Equations: 0, References: 27, Pages: 5

                quality of life, ichtyosis, pain, mental health


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