A cross-sectional analysis of quality of life in skin of color patients with cutaneous T-cell lymphoma: An exploratory study

Abraham, Jaclyn; Wei, Grace; Desai, Seemal R.; Seminario‐Vidal, Lucia

doi:10.1016/j.jaad.2022.01.022

Cited by 4 publications

(5 citation statements)

References 4 publications

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“…Studies have demonstrated that the incidence of MF/SS in the United States is highest in populations with SOC, with prominent differences in disease presentation and outcomes between NSOC and SOC patients with MF/SS, including younger age at clinical presentation and higher mortality rates among SOC patients [1,2,5]. Previous studies have described the negative impacts that CTCL has on patients' health-related quality of life (HRQoL), which encompasses physical, psychological, and social aspects of health [6][7][8][9]. Recently, our group did a survey study that compared HRQoL between SOC and NSOC patients with CTCL and found that the degree of pruritus, skin-related embarrassment, and interference with participation in sports, social, and leisure activities were significantly more pronounced in SOC patients [8].…”

Section: Introductionmentioning

confidence: 99%

“…Previous studies have described the negative impacts that CTCL has on patients' health-related quality of life (HRQoL), which encompasses physical, psychological, and social aspects of health [6][7][8][9]. Recently, our group did a survey study that compared HRQoL between SOC and NSOC patients with CTCL and found that the degree of pruritus, skin-related embarrassment, and interference with participation in sports, social, and leisure activities were significantly more pronounced in SOC patients [8]. Due to the lack of qualitative HRQoL research in SOC patients with MF/SS and the disease outcome disparities observed in this demographic, we sought to address this gap by conducting semi-structured interviews and thematic analyses to gather in-depth opinions and identify new patient perspectives that may have been overlooked in prior studies.…”

Section: Introductionmentioning

confidence: 99%

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Perspectives on and Quality of Life in Skin of Color Patients With Mycosis Fungoides/Sézary Syndrome: A Qualitative Analysis

Abraham¹,

Wei²,

Desai³

et al. 2023

Cureus

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BackgroundPrior quantitative studies have described the diminished health-related quality of life (HRQoL) faced by the overall mycosis fungoides (MF)/Sézary syndrome (SS) population; yet, little is known about how the disease affects HRQoL in skin of color (SOC) patients. This qualitative study sought to explore the lived experiences of SOC patients with MF/SS and gain deeper insights into the impact the disease has on various facets of HRQoL. MethodologyInterviews with SOC patients with MF/SS ≥18 were recruited from a cutaneous lymphoma clinic. A thematic analysis was performed to identify overarching themes. ResultsTen patients were invited to participate from July to September 2021. One patient with SS and seven patients with MF (four in the early stage and four in the advanced stage), with a median age of 60.5 years, agreed to participate. Emerging themes included diagnostic and therapeutic delays frequently due to initial misdiagnoses with other skin conditions. Physical and functional burdens significantly hindered participants' abilities to carry out daily responsibilities and maintain employment, and impacts on physical appearance (e.g., darkened skin) led to increased self-consciousness and lack of social acceptance. Participants regarded family and faith as main sources of support in addition to developing healthy coping strategies, such as self-acceptance and adaptability. All participants reported feeling satisfied with their access to healthcare information and the quality of care received. ConclusionsOur findings provide greater insights into how HRQoL is impacted across SOC patients with MF/SS, which can help raise awareness among healthcare providers and assist with creating interdisciplinary healthcare approaches to better support the needs of this population.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Perspectives on and Quality of Life in Skin of Color Patients With Mycosis Fungoides/Sézary Syndrome: A Qualitative Analysis

Abraham¹,

Wei²,

Desai³

et al. 2023

Cureus

Self Cite

View full text Add to dashboard Cite

show abstract

Section: Introductionmentioning

confidence: 99%

“…Previous studies have described the negative impacts that CTCL has on patients' health-related qualityof-life (HRQoL), which encompass the physical, psychological, and social aspects of health [7][8][9]. Recently, our group did a survey study that compared HRQoL between SOC and NSOC CTCL patients and found that the degree of pruritus, skin-related embarrassment, and interference with participation in sports, social, and leisure activities were signi cantly more pronounced in the SOC patients [9]. As a result of the lack of qualitative HRQoL research in SOC patients with MF/SS combined with the disease outcome disparities observed in this demographic, we sought to address this gap by conducting semistructured interviews and a thematic analysis to gather in-depth opinions and to identify new issues and perspectives that may have been overlooked in prior studies.…”

Section: Introductionmentioning

confidence: 99%

Perspectives and quality of life in skin of color patients with mycosis fungoides/Sézary syndrome: a qualitative analysis

Abraham¹,

Wei²,

Desai

et al. 2022

Preprint

Self Cite

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Purpose: Prior quantitative studies have described diminished health-related quality-of-life (HRQoL) faced by the mycosis fungoides (MF)/Sézary syndrome (SS) population, yet little is known about how they specifically affect HRQoL in patients with skin of color (SOC). The objective of this qualitative study was to gain insights into the lived experiences of SOC patients with MF/SS and the disease’s impact on various facets of HRQoL. Methods: Interviews with SOC patients with MF/SS ≥18 recruited from a cutaneous lymphoma clinic. A thematic analysis was performed to identify overarching themes.Results: Ten patients were invited to participate during July to September 2021. One SS and seven MF patients [4 early stage, 4 advanced stage] with a median age of 60.5 years agreed to participate. Emerging themes included diagnostic and therapeutic delays frequently due to initial misdiagnoses with other skin conditions. Physical and functional burdens significantly hindered participants’ abilities to carry out daily responsibilities and maintain employment. Impacts on physical appearance (e.g., darkened skin) led to increased self-consciousness and lack of social acceptance. Participants regarded family and faith as main sources of support, in addition to developing healthy coping strategies and personal growth, which included self-acceptance and adaptability. All participants reported feeling satisfied with their access to healthcare information and quality of care received. Conclusion: Our findings provide greater insight into how HRQoL is impacted across SOC patients with MF/SS, which can help raise awareness among healthcare providers and assist with creating interdisciplinary approaches of care to better support the needs of this population.

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“…It is important to acknowledge these demographics, as certain populations may experience poorer QoL. Indeed, in a recent study, Abraham et al 5 showed that skin-of-color patients with CTCL experience poorer QoL compared with their non–skin-of-color counterparts.…”

mentioning

confidence: 99%

Understanding itch in cutaneous T-cell lymphoma: Exploring the impact of comorbidities, treatment regimens, and racial differences on quality of life

Joshi¹,

Duvic²

2023

JAAD International

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A cross-sectional analysis of quality of life in skin of color patients with cutaneous T-cell lymphoma: An exploratory study

Cited by 4 publications

References 4 publications

Perspectives on and Quality of Life in Skin of Color Patients With Mycosis Fungoides/Sézary Syndrome: A Qualitative Analysis

Perspectives on and Quality of Life in Skin of Color Patients With Mycosis Fungoides/Sézary Syndrome: A Qualitative Analysis

Perspectives and quality of life in skin of color patients with mycosis fungoides/Sézary syndrome: a qualitative analysis

Understanding itch in cutaneous T-cell lymphoma: Exploring the impact of comorbidities, treatment regimens, and racial differences on quality of life

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