Quality of Life in Patients With Skin of Color and Chronic Graft-vs-Host Disease | Allergy and Clinical Immunology | JAMA Dermatology | JAMA Network
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Table 1.  Clinical Severity Scores and Skin-Focused FACT-BMT Responses in Patients With Skin of Color and cGVHDa
Clinical Severity Scores and Skin-Focused FACT-BMT Responses in Patients With Skin of Color and cGVHDa
Table 2.  Lee Symptom Score Skin-Focused Responses in Patients With Skin of Color and cGVHDa,b
Lee Symptom Score Skin-Focused Responses in Patients With Skin of Color and cGVHDa,b
1.
Lee  SJ, Flowers  ME.  Recognizing and managing chronic graft-versus-host disease.   Hematology Am Soc Hematol Educ Program. 2008;2008(1):134-141. doi:10.1182/asheducation-2008.1.134PubMedGoogle ScholarCrossref
2.
Jagasia  MH, Greinix  HT, Arora  M,  et al.  National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: I. the 2014 Diagnosis and Staging Working Group report.   Biol Blood Marrow Transplant. 2015;21(3):389-401.e1. doi:10.1016/j.bbmt.2014.12.001PubMedGoogle ScholarCrossref
3.
Yost  KJ, Eton  DT.  Combining distribution- and anchor-based approaches to determine minimally important differences: the FACIT experience.   Eval Health Prof. 2005;28(2):172-191. doi:10.1177/0163278705275340PubMedGoogle ScholarCrossref
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    Research Letter
    February 12, 2020

    Quality of Life in Patients With Skin of Color and Chronic Graft-vs-Host Disease

    Author Affiliations
    • 1School of Medicine, Wayne State University, Detroit, Michigan
    • 2Dermatology Branch, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, Maryland
    • 3Walden University, Minneapolis, Minnesota
    • 4Immune Deficiency Cellular Therapy Program, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland
    JAMA Dermatol. 2020;156(5):589-590. doi:10.1001/jamadermatol.2019.4857

    Chronic graft-vs-host disease (cGVHD) is a major complication of hematopoietic stem cell transplantation. The skin is the most commonly involved site and may present with a broad range of inflammatory and fibrotic manifestations that add to the complexity of diagnosis and management in patients with skin of color.1 Subtle erythema may be difficult to discern because of background skin pigmentation. In addition, current validated physician-reported and patient-reported cGVHD outcome measures offer limited insight into the effect of cGVHD-associated dyspigmentation, which may be of greater significance in patients with skin of color. This study explores the breadth and influence of cGVHD in a natural history cohort of patients with skin of color.

    Methods

    A total of 40 adult patients and 6 pediatric patients with nonwhite Fitzpatrick skin types (III-VI) and a diagnosis of cGVHD were evaluated at the National Institutes of Health between 2004 and 2013 as part of a cGVHD natural history research protocol (ClinicalTrials.gov identifier: NCT00331968). The protocol was approved by the institutional review board at the National Cancer Institute, and written informed consent was obtained from participants. Comprehensive skin assessment included skin examination, cGVHD scoring by body surface area, and photography. The cGVHD type was classified based on skin morphology as (1) no active skin disease/no dyspigmentation due to graft-vs-host disease (NoGVHDP−), (2) no active disease/with dyspigmentation (NoGVHDP+), (3) epidermal type (ET), (4) sclerotic type (ST), and (5) both epidermal type and sclerotic type (ET/ST). The primary outcome was the influence of cGVHD type on quality of life using validated measures, including Clinical Severity Score (CSS; 0-10 scale) as reported by both physicians and patients, and the skin domains of both the Functional Assessment of Cancer Therapy–Bone Marrow Transplant (FACT-BMT; 0-4 scale for 47 items [maximum score, 188]) and Lee Symptom Scale (LSS; 0-4 scale for 5 categories [maximum score, 20]) as reported by patients.

    Results

    The cohort consisted of 7 patients with NoGVHDP−, 9 with NoGVHDP+, 9 with ET, 8 with ST, and 13 with ET/ST. Clinical Severity Score responses were available for 34 patients (28 adult and 6 pediatric), FACT-BMT responses for 31 adults, and LSS responses for 34 adults (Tables 1 and 2).3 Patients with ET/ST reported the greatest clinical severity (mean, 7.0/10) on CSS, the most skin bother (mean, 3.6/4) on FACT-BMT, and the highest total LSS (14.0/20). Using the CSS, physicians overall rated patients with skin of color to be less severely affected than patients rated themselves (mean, 2.8/10 vs 3.7/10). In particular, self-rated severity of NoGVHDP+ was higher than the physician-rated severity (mean, 2.4/10 vs 0.1/10). Despite having no active cGVHD, the NoGVHDP+ group self-rated their skin disease as more severe than patients with ST (mean, 2.4/10 vs 1.1/10).

    The total FACT-BMT scores were similar among patients with NoGVHDP+ (mean, 101.0/188) and those with ST (mean, 108.0/188). Similarly, in all LSS categories (color, rash, thickness, sores, and itch), patients with ET were more bothered by their disease than patients with ST (mean, 13/20 vs 5.4/20).

    Discussion

    Self-reported measures provide the patient’s perspective of a condition’s effects and are unfiltered by physician opinion. This study was limited by the lack of a comparator group; however, the data suggest that patients with skin of color perceive the effect of pigment alteration to be significant when compared with sclerotic involvement, despite greater functional compromise associated with the latter. Given that dyspigmentation is generally considered a marker of damage rather than disease activity, the influence of dyspigmentation may be overlooked in skin scoring of disease burden.2 Indeed, patients with dyspigmentation, but no active disease, disliked the appearance of their skin as much as those with active sclerotic disease and were more bothered by their skin than those with active sclerotic disease. To our knowledge, this is the first study exploring the influence of cGVHD skin disease specifically in patients with skin of color. Data were collected systematically using validated tools recommended by the National Institutes of Health GVHD Consensus Group (ie, FACT-BMT, LSS). Although current cGVHD quality of life and symptom severity measures inquire about abnormal skin color, they do not specifically inquire about dyspigmentation. We believe that the effect of dyspigmentation in patients with skin of color may not be adequately captured in current GVHD skin scoring systems and should be expanded in quality of life assessments.

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    Article Information

    Accepted for Publication: December 13, 2019.

    Corresponding Authors: Zoë Smith, BS, School of Medicine, Wayne State University, 540 E Canfield St, Detroit, MI 48201 (zosmith@med.wayne.edu); Edward W. Cowen, MD, MHSc, National Institutes of Health, 10 Center Dr, MSC 1908, Bethesda, MD 20892 (cowene@mail.nih.gov).

    Published Online: February 12, 2020. doi:10.1001/jamadermatol.2019.4857

    Author Contributions: Dr Cowen and Ms Smith had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

    Study concept and design: Smith, Pichard, Cowen.

    Acquisition, analysis, or interpretation of data: Smith, Rosenstein, Banerjee, Pavletic.

    Drafting of the manuscript: Smith, Banerjee.

    Critical revision of the manuscript for important intellectual content: All authors.

    Statistical analysis: Smith, Banerjee.

    Administrative, technical, or material support: Smith.

    Study supervision: Rosenstein, Pavletic, Cowen.

    Conflict of Interest Disclosures: None reported.

    References
    1.
    Lee  SJ, Flowers  ME.  Recognizing and managing chronic graft-versus-host disease.   Hematology Am Soc Hematol Educ Program. 2008;2008(1):134-141. doi:10.1182/asheducation-2008.1.134PubMedGoogle ScholarCrossref
    2.
    Jagasia  MH, Greinix  HT, Arora  M,  et al.  National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: I. the 2014 Diagnosis and Staging Working Group report.   Biol Blood Marrow Transplant. 2015;21(3):389-401.e1. doi:10.1016/j.bbmt.2014.12.001PubMedGoogle ScholarCrossref
    3.
    Yost  KJ, Eton  DT.  Combining distribution- and anchor-based approaches to determine minimally important differences: the FACIT experience.   Eval Health Prof. 2005;28(2):172-191. doi:10.1177/0163278705275340PubMedGoogle ScholarCrossref
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