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The impact of gender, age, race/ethnicity, and stage on quality of life in a spectrum of cutaneous lymphomas

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Abstract

Purpose

Cutaneous lymphomas (CLs) are a group of rare, potentially disfiguring and disabling cancers that can have a significant impact on quality of life (QoL). While previous studies have shown that mycosis fungoides (MF) and Sézary syndrome (SS) impair QoL, the effect of other types of CL on QoL has not been evaluated.

Objective

To determine the impact of disease on QoL in all CL patients and to assess how QoL between the CL sub-types varies by demographic and clinical factors.

Methods

The Cutaneous Lymphoma Distress Questionnaire (CL-DQ) was used to assess QoL. All CL patients seen in a multidisciplinary CL clinic were screened for eligibility. Questionnaire responses were collected over a 22-month period between 2017 and 2019. A cross-sectional analysis of CL-DQ scores from an initial visit was performed to determine the effect of disease on QoL across CL sub-types and the potential impact of patient demographics, CL sub-type, and type of treatment.

Results

The study population consisted of 151 patients presenting with distinct types of cutaneous B- and T-cell lymphomas. Notable across the study population were the findings of frustration (44%), worry about progress/spread (43%), itching/pruritus (32%), and embarrassment/shame (28%). QoL was found to be most negatively affected in SS patients, females, younger patients, Black patients, and those with advanced stages of MF/SS.

Conclusions

Impairment of QoL due to CL correlates with gender, age, race/ethnicity, and stage of MF/SS. While the negative impact on QoL is most pronounced in SS patients, other CL sub-types also affect QoL and impact psychosocial distress. Our findings highlight the need for QoL assessment in all CL patients and further examination of disparities noted across demographic groups.

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Data Availability

De-identified data can be made available upon request.

Code availability

Upon request.

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Acknowledgements

We would like to thank our patients that participated in this study, and all of our clinical staff for their assistance and tireless efforts to improve the lives of our patients.

Funding

This research included work performed by the Biostatistics and Mathematical Oncology Core supported through NIH/NCI Cancer Center Support Grant (P30CA033572) to the City of Hope, NIH/NCI grant (R01 CA229510-01), and Leukemia Lymphoma Society Clinical Scholar Award (2325–19) to C. Querfeld.

Author information

Authors and Affiliations

  1. Division of Dermatology, City of Hope, Duarte, USA

    Xochiquetzal U. Martinez, Farah R. Abdulla & Christiane Querfeld

  2. Division of Biostatistics, City of Hope, Duarte, USA

    Arnab Chowdhury, Tracey Stiller & Joycelynne Palmer

  3. Patient & Family Resource Center, City of Hope, Duarte, USA

    Matthew Loscalzo & Estella Barrios

  4. Department of Hematology/Hematopoietic Cell Transplantation, City of Hope, Duarte, USA

    Jasmine Zain & Steven T. Rosen

  5. Beckman Research Institute, City of Hope National Medical Center, 1500 E. Duarte Road, Duarte, CA, 91010, USA

    Steven T. Rosen & Christiane Querfeld

Authors
  1. Xochiquetzal U. Martinez
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  2. Arnab Chowdhury
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  3. Tracey Stiller
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  4. Joycelynne Palmer
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  5. Matthew Loscalzo
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  6. Estella Barrios
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  7. Farah R. Abdulla
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  8. Jasmine Zain
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  10. Christiane Querfeld
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Contributions

Concept and design: X.U.M., J.P., M.L., S.T.R., C.Q.

Data acquisition: X.U.M., E.B., F.A.R., J.Z., S.T.R., C.Q.

Analysis and interpretation of the data: X.U.M., A.C., T.S., J.P., M.L., S.T.R., C.Q.

Drafting of the article or critical revision of the article for important intellectual content: all authors.

Study supervisor: C.Q.

Corresponding author

Correspondence to Christiane Querfeld.

Ethics declarations

Ethics approval

The study was exempt from IRB review under 45CFR46.104 (d), and consent was not required. The study was approved for a Waiver of HIPAA Authorization (45CFR164.512(i)(2)(ii)).

Consent to participate

Not applicable.

Consent for publication

Not applicable.

Conflict of interest

X.U.M., A.C., T.S., E.B.: none. J.P.: statistical consultant to Gilead Sciences; statistics instructor for ASTCT. M.L.: consultant to AstraZeneca. F.R.A.: consultant to Mallinckrodt; speaker’s bureau for Mallinckrodt; receives grant/research support from Johnson & Johnson, Elorac, Trillium, Stemline, MiRagen, Bioniz, and Mallinckrodt. J.Z.: consultant to Kyowa Kirin, Seattle Genetics, and Mundi Pharma. S.T.R.: speaker’s bureau for Celgene, Global Education Group and Paradigm Medical Communications, LLC, and Abbvie; consultant to Novartis Pharmaceuticals Corporation, Pepromene Bio, Inc, Exicure, and Apobiologix/Apotex Inc.; education advisory board to Seattle Genetics, NeoGenomics, and Aileron Therapeutics, Inc; has stock options with Pepromene Bio, Inc, and Exicure. C.Q.: Consultant to MiRagen, Helsinn/Actelion, Medvir, Stemline Therapeutics, Trillium, Bioniz, and Kyowa Kirin; contracted clinical investigator/researcher to MiRagen, Helsinn/Actelion, Bioniz, Kyowa Kirin, Celgene, Trillium, Esai, Soligenix, and Elorac; received research grant from Celgene.

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Martinez, X.U., Chowdhury, A., Stiller, T. et al. The impact of gender, age, race/ethnicity, and stage on quality of life in a spectrum of cutaneous lymphomas. Support Care Cancer 29, 6669–6679 (2021). https://doi.org/10.1007/s00520-021-06241-6

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  • DOI: https://doi.org/10.1007/s00520-021-06241-6

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