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

doi:10.21203/rs.3.rs-1458724/v1

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Research Article

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

https://doi.org/10.21203/rs.3.rs-1458724/v1

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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.

Lymphoma

T-cells

cutaneous

quality of life

health disparities

skin of color

It is well known that dermatologic health disparities are most prominent in ethnic minorities, or skin of color (SOC) patients [1, 2]. There is increased morbidity and mortality among a range of dermatologic conditions, including cutaneous malignancies [1–3]. For instance, although the incidence of melanoma skin cancer is highest in non-skin of color (NSOC) individuals, SOC patients are more likely to be diagnosed at more advanced stages of disease and have a significantly reduced 5-year survival rate compared to NSOC patients (74.1% v. 92.9%) [1]. These outcome disparities are also observed in nonmelanoma skin cancer patients, such as squamous cell carcinoma, who commonly have more aggressive tumors and receive a diagnosis further along in the disease process [1]. Mycosis fungoides (MF) and Sézary syndrome (SS) are rare diseases but are the most common subtypes of cutaneous T-cell lymphoma (CTCL), a type of non-Hodgkin’s lymphoma characterized by uncontrolled T-cell proliferation predominantly affecting the skin [1, 4]. CTCL comprises 2% of all lymphomas, with an approximate incidence rate of 0.3 to 1.0 per 100,000 lymphoma cases annually [5]. 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, 3, 6].

Previous studies have described the negative impacts that CTCL has on patients’ health-related quality-of-life (HRQoL), which encompass the physical, psychological, and social aspects of health [7–9]. 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 significantly 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 semi-structured 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.

Ten adult MF/SS SOC patients were invited to participate in a semi-structured interview. The number of participants was not based on statistical calculation, as this study was designed to gain in-depth perceptions and identify novel themes affecting HRQoL of SOC patients with MF/SS. Comparable sample sizes have been used in similar studies [10, 11]. The details of the qualitative approach are outlined below.

Recruitment

Patients were recruited from a single multi-disciplinary cutaneous lymphoma clinic at an NCI-designated cancer center in Florida via a recruitment flyer and intake coordinator during routine clinical appointments. Established patients over the age of 18 who were of SOC (Black, Hispanic, or Asian), English speaking, and had a diagnosis of MF or SS per NCCN guidelines were eligible to participate.

Study Design and Analysis

An interview script adapted from Beynon, Selman, & Radcliffe et al. was created and utilized for this study [8]. One-on-one, semi-structured interviews were conducted via phone or Microsoft Teams between July and September 2021. Consent was obtained before beginning each interview. All interviews were audio recorded and transcribed verbatim. To protect participant privacy, all interviews were performed privately between the interviewer and participant in an enclosed setting. Interview audio recordings and transcripts were uploaded to a password protected folder in a Transport Layer Security (TLS) data encrypted software application. Interviews were performed until novel codes and themes ceased to emerge and all research team members agreed data saturation was reached.

An inductive thematic analysis was performed on collected data to identify recurrent themes throughout the interviews [12]. Preliminary coding of interview transcripts was performed using a data-driven approach to create an initial codebook. Codes were adapted and modified as needed throughout the analysis and the final codebook was approved by the principal investigator with extensive experience with the MF/SS patient population. Two researchers independently coded each transcript using the codebook. Discrepancies were reviewed until a consensus was reached. The codes generated were then organized into overarching themes. Coding for each interview was compared between the two researchers and inter-rater reliability was calculated to ensure consistency (Cohen's κ = 0.8972).

Participant Demographics

A total of ten patients were contacted for interviews, with eight completed. Two interviews were unable to be completed due to one hospital admission and one personal emergency. Eight (4 male, 4 female) patients with a median age of 60.5 years (27–79) participated in an interview ranging from 16 to 57 minutes in length (Table 1). Five participants (4 females, 1 male) identified as Black, and three (3 males) identified as Hispanic. Our sample consisted of one SS and seven MF patients and was distributed equally in regard to disease stage [4 early (stages IA-IIA), 4 advanced (stages IIB-IVA)].

Thematic Analysis

Our analysis identified eight overarching themes that encompass both the positive and challenging aspects of living with MF/SS and its impact on patient QoL. These themes include diagnosis experience, physical consequences, psychosocial consequences, financial implications, questions and concerns surrounding diagnosis, healthcare experience, coping mechanisms, and sources of support. A description of major themes, subthemes, and patient quotes to illustrate our findings are described in the following sections.

Diagnosis Experience

The diagnosis experience recounted by participants fell into two subthemes: time to diagnosis and reaction to diagnosis. Half of participants reported a delay in diagnosis, frequently as a consequence of an initial misdiagnosis with another skin disorder: “…[T]hey couldn't pinpoint what was wrong with me for other... dermatitis, psoriasis, lupus. I've been treated for different kinds of diseases until I came to [cancer center] in my fourth year…” (P1, female). Delays typically ranged between 2 to 4 years in length and often required participants to visit multiple healthcare providers [“[W]hen I was first diagnosed, the doctor said he didn't believe it. And then it went like another two years, I think, before I really got seen because I switched dermatologists. And that dermatologist started treating me when he realized that maybe it was a little more serious, and he should send me to a specialist in the city.” (P2, male)], whereas the diagnosis for others was fairly straightforward [“He said that this may be a, a T-cell lymphoma or Mycosis. Let's do a biopsy. Boom, biopsy came back.” (P7, male)]. One participant emphasized the frustration they felt when learning they had been receiving treatments for the wrong disorder, which contributed to a temporary skepticism towards their healthcare providers: “How did I feel? Angry. I guess I was angry. I was, you know, you start questioning the doctors, you know. Their experience, their expertise. How can they miss it for so long, you know?” (P8, male).

The reactions of participants when notified of their diagnosis ranged from feelings of relief, indifference, sadness, fear, and mixed emotions. For some who had dealt with years of uncertainty and inadequate treatments due to an initial misdiagnosis, a definitive diagnosis offered relief: “... [I]t was a relief, because now that I found out what it is, then it could, you know, be treated properly, you know?” (P1, female). Other participants felt indifferent when learning of their diagnosis, choosing to focus their energy on learning as much as they could about the disease: “Um, I guess I really didn't feel one way or another. I didn't feel bad. I didn't feel happy. I just kind of felt normal. I mean, I guess I kind of prepared myself for whatever the diagnosis would be.” (P4, female). Sadness [“[I] was a little bit sad.” (P6, male)] and fear [“They tell you, ‘You have cancer’, you first panic.” (P8, male)] were other reactions felt by participants, but a clear explanation of the disease, prognosis, and treatment plan by the provider usually dissipated any uneasy feelings.

Physical Consequences

Pruritus was a physical symptom experienced by all participants, ranging in severity from mild to severe [“The itch was very tormenting.” (P5, female)] and interfering with some participants’ sleep [“Before treatment it was... waking up, itching, just overall being uncomfortable.” (P3, female)]. Some participants noted pain as a result of their skins’ condition, including neuropathic symptoms such as “pins and needles” (P8, male). The majority of participants reported that their mobility was impacted to some degree: “…my feet swelled up, so it was hard to walk and things like that.” (P3, female). Other physical effects of the disease involved participants’ physical appearance, including skin discoloration and substantial swelling.

Psychosocial Consequences

Because MF/SS manifests on the skin, many participants expressed feelings of self-consciousness, isolation, decreased social activity, lack of social acceptance, loss of identity, and general feelings of unattractiveness. For example, the isolation described by some participants usually resulted from self-consciousness, as described by P1: “It has me stay in my house and didn't want to go outside because... when I stare in the mirror, I know, I see, like, a walking dead, I'm telling you.” (P1, female). Some participants also mentioned intentionally wearing long sleeves and pants to hide their condition. Other participants described a loss of identity from inability to carry out responsibilities, in some instances leading to an increased burden on their families: “You feel bad, as a father, as a husband, as a man, that you're not doing your obligations, you know?” (P8, male). One participant encountered lack of acceptance in the form of a hostile work environment, which led to leaving work and losing coworkers they had once considered friends: “I dealt with students. They were very cruel. And some of the staff is very cruel, too… like, 'Oh, get away from me, oh, look at you, look at your skin’.” (P5, female).

Financial Implications

Loss of employment and healthcare costs contributed to a financial burden some participants experienced as a result of their disease. Loss of employment resulted from many factors, including physical symptoms (e.g., fatigue, painful sores) and the time commitment required for treatment: “I was let go… because, then it came to a thing where I couldn't work these days, because [doctor's name] had me there three days a week.” (P8, male). Costs associated with healthcare visits [“…doctor bills start rolling in.” (P3, female)] and treatments were also reported as sources of stress.

Questions and Concerns Surrounding Diagnosis

Many participants mentioned being left with unanswered questions surrounding the etiology of their disease: “Probably, like anyone else, just, what does it stem from? Basically, yeah, what is, what causes it?” (P4, female). Others expressed a concern with a lack of cure, and that the multiple treatments required to find an effective treatment led to frustration [“Am I a guinea pig or something? What are we, trying me out?" (P5, female)]. Another concern for participants involved the timing of their diagnosis, with one participant directly attributing their diagnostic delay to SOC discrimination in healthcare: "I felt like one of the reasons my diagnosis took as long as it did… is because I'm a black woman in America, and I feel like black women aren't taken serious in the medical field.” (P3, female).

Healthcare Experience

All participants reported satisfaction with the current care they were receiving, specifically regarding their access to information [“I feel I could pick up the phone and call somebody and get an answer.” (P2, male)] and the high quality of care provided [“…he went through every single inch of that PET scan with me and my wife in full detail." (P8, male)]. Although all participants were pleased with their current care, those who had reached a stage of successful management after multiple years of trial-and-error highlighted the challenging nature of the experience. For one participant, it took nearly 11 years to find an effective treatment, resulting in questioning the lack of research being put forth into finding a cure for MF/SS: “…the way they will spend money for other cancers, you know, they would give big money for other cancers to be researched… I don't think cutaneous T-cell lymphoma is getting that acknowledge, that acknowledgement from the government.” (P1, female). Another participant mentioned frustration with recurrent biopsies needed to monitor their disease, especially on more noticeable areas of the body that led to increased self-consciousness, such as the face [“I have one that was done on my eyebrows, and that, that, that dent is still there on my face, you know…” (P5, female)].

Coping Mechanisms

Many participants described coping with the chronicity of their disease through self-acceptance, adaptability [“I would wear, like, long sleeves and always have long pants on. I would not go to the swimming pool, and I would go to the beach, but maybe at night." (P1, female)] and removing focus from events that are out of their control [“What will happen, will happen. I've had a wonderful life. Why should I worry? I'm gonna die no matter what.” (P7, male)]. Others found it comforting to share their experiences verbally [“I appreciate you giving me the opportunity to share. And actually, it really felt good, you know, explaining myself in the questions…” (P5, female)] or through written mediums; one participant described a book they are writing about their journey.

Sources of Support

Major sources of support mentioned by participants included family, especially spouses and children [“My wife and my three sons…” (P7, male); “[A]s long as my wife is around, you know…that's the answer to everything.” (P2, male)]. Others mentioned medical professionals as an important source of support, particularly due to their ability to provide answers and guidance when necessary [“When I would sit there at every three-month visit, and we would discuss what's going on, I always left there thinking there's a game plan.” (P8, male)]. Further, participants also mentioned their religion and faith as a source of comfort [“I guess that's why I don't really worry, or it doesn't really bother me. Because, you know, I know it's in God's hands.” (P4, female)]. Two participants mentioned the utilization of a professional therapist or support group, but did not find them to be as effective as their other support systems, such as speaking with family members [“…[Y]ou go into a support group and you're there with them for the day… I am around my family that see me in and out, and they know my good days and my bad days, so we can talk about it, you know?” (P1, female)].

Our qualitative analysis supports prior research evidence that MF/SS is associated with profound impacts on HRQoL and further offers the unique contribution of situating these findings in the context of SOC patients with MF/SS [7, 8, 13, 14].

Participants reported significant delays in diagnosis that were often a consequence of initial misdiagnosis, which is consistent with findings from previous CTCL research [3, 7]. However, one participant attributed her delayed diagnosis to healthcare system discrimination against patients with SOC, which represents a novel concern among patients with CTCL. A prior study found that SOC patients with cancer have less confidence in healthcare providers as a result of experiences across their life course (e.g., perceived racial discrimination) and experiences with the healthcare system as a whole (e.g., suspicion of medical care) [16]. Indeed, a study by Gorbatenko-Roth et al. also showed that SOC patients receiving dermatologic care in NSOC-designated clinics compared to SOC-designated clinics perceived medical providers to be less thorough [17]. For instance, NSOC clinical providers were perceived as avoiding physical contact during clinical encounters, which could be interpreted as a sign of disrespect and raises concern surrounding provider racial sensitivity [17]. There has also been an association observed between SOC MF patients and longer, more costly inpatient hospitalizations compared to NSOC MF patients [18]. This could be the result of disparities in access to ambulatory care or resistance to seeking timely care due to lack of medical provider trust, leading to more serious disease requiring inpatient care [18].

The most prominent symptoms described in this study and across the literature included pruritus, pain, impaired ability to perform activities of daily living (ADL), increased self-consciousness, social withdrawal, and sense of lost identity [7, 8, 15]. Although changes in skin texture and increased erythema have been reported as psychosocial stressors for CTCL patients in prior studies overall, participants in our SOC cohort additionally reported that the darkening of their skin tone significantly contributed to increased feelings of self-consciousness [7, 8].

Financial costs associated with cutaneous lymphomas are one of the highest across all dermatologic diseases [19, 20]. Some participants indicated that employment loss, frequently due to time commitments required for certain treatments, was a financial burden. Others expressed frustration towards the length of time it took to find an effective therapy, citing that the trial-and-error approach was both tiring and financially burdensome. Further, none of the participants were aware of or received any type of financial support.

In the past decade, cancer death rates have declined for common cancers (e.g., lung cancer, breast cancer), however, there is a lack of such success in rare cancers, and particularly in minority groups [21, 22]. Thus, another source of concern for our participants relates to the unknown cause of the disease and the minimal research efforts, compared to other cancers, to find a cure, which is consistent with other QoL studies in patients with CTCL [7]. In previous qualitative studies that explored QoL among patients with more common types of cancers, participant concerns surrounding lack of research efforts towards discovering a cure were reported to a lesser degree [23, 24].

Satisfaction with care and access to information were both positive aspects of the illness experience among our participants. Participants reported that ease of access to information and timely communication with members of the healthcare team enhanced their healthcare experience. Similar CTCL QoL studies have also noted that patients who had adequate access to information found that it helped to alleviate their anxieties surrounding their diagnosis [7, 8]. This also contributed to participants regarding their healthcare providers as a source of support. Other important support systems mentioned by participants included family, religion, and faith. Some participants reported that sharing their experiences helped them to cope with their disease, while others coped by accepting their circumstances and adapting to the situation. Participants from other CTCL QoL studies have reported that practical support from family and friends would be helpful, such as applying topical medications, driving to doctors’ appointments, and helping with household upkeep [15]. Interestingly, none of our participants reported utilizing resources available from large support groups such as the Cutaneous Lymphoma Foundation or the Lymphoma and Leukemia Society, which raises an important question as to whether this is because they are unaware that such resources exist or because they are uncomfortable with requesting access to these resources.

Our findings highlight the need to increase provider awareness and develop specific resources to address the physical, psychosocial, and financial burdens that impact SOC patients with MF/SS. With regard to the prevalent diagnostic delays among this population, enhancing dermatologists’ training in identifying skin pathologies in non-white skin tones–– including expanding the scope of dermatologic learning resources (e.g., textbooks) to include more pictures of pathologies in SOC–– could help to minimize this pattern of diagnostic delays [25]. Also, utilizing patient reporting outcome measures (PROMs) within the clinical setting may assist with earlier identification of patients in need of additional support to manage the physical, psychological, and social consequences of their disease [26, 27]. Further, increased interdisciplinary clinical management may be beneficial, as previous studies have emphasized the association between psychosocial intervention (e.g., cognitive behavioral therapy, acceptance and commitment therapy) and improved QoL in patients living with a chronic skin condition [28].

Limitations of our study included a small sample size, exclusion of non-English speaking patients, and possible interviewer bias. Efforts were made to mitigate interviewer bias, including utilization of a standardized semi-structured interview guide that was employed across all participants. Further, participants were recruited from a tertiary cancer center, which may limit generalizability to all SOC populations with MF/SS. Additional qualitative studies with larger sample sizes drawn from diverse sample populations are needed to better understand the full spectrum of experiences of MF/SS patients with SOC.

The disease manifestations of MF/SS have significant impacts on the physical, psychological, and social HRQoL of patients. Our findings build upon prior research demonstrating divergent outcomes between NSOC and SOC MF/SS populations and provides qualitative understanding into the lived experiences of MF/SS patients with SOC. Overarching themes included diagnosis and healthcare experience, physical and psychosocial consequences, financial impacts, and support systems. These findings lend valuable insight to developing interdisciplinary approaches that health professionals can utilize to raise awareness and better support the needs of CTCL patients with SOC.

Funding

This work was supported through an educational grant from Kyowa Kirin, Inc entitled The EDUCATE Initiative – A Multimodal Campaign to Enhance Provider-Patient Awareness of CTCL Disparities in Skin of Color.

Competing Interests

LSV currently is an employee and shareholder of Eli Lily and Company. LSV had advisory board relationships with Novartis, Boehringer Ingelheim, Helsinn, Kyowa Kirin, Regeneron, Blueprint. She or her institution received research funding from Eli Lilly and Company, Soligenix, Helsinn, Eisai, Boehringer Ingelheim, Novartis, AbbVie, BMS, Celgene, Glenmark, Kyowa Kirin, Amgen, AnaptysBio, Innate Pharma. LSV has been speaker for Helsinn, Kyowa Kirin. These disclosures are not relevant to the current manuscript. The rest of the authors have no conflicts of interest to declare.

Availability of Data and Material

Not applicable.

Code Availability

Not applicable.

Author Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Jaclyn Abraham, Grace Wei, and Lucia Seminario-Vidal. The first draft of the manuscript was written by Jaclyn Abraham and Grace Wei and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Ethics Approval

Reviewed and approved by the University of South Florida IRB; Protocol #002765

Consent to Participate

Informed consent was obtained from all individual participants included in the study.

Consent to Publish

The authors affirm that all participants provided informed consent for publication of findings gathered from the study.

Conflicts of Interest

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Table I. “Participant Characteristics”

Characteristics

Results, N

Age, years

18-29

30-49

50-69

≥70

Gender

Male

Female

CTCL Subtype

Mycosis Fungoides

Sezary Syndrome

Disease Stage

IIB

IIIA

IVB

Race/Ethnicity

Black

Hispanic

Table II. “Quotations from patients with mycosis fungoides/Sézary syndrome by theme”

Theme: Diagnosis Experience
Subtheme	n (%)
Delayed time to diagnosis	4 (50%)
“I've been treated for different kinds of diseases until I came to [cancer center] in my fourth year, and they did the same routine that all the doctors had been doing, but the studies didn't show up, like, between four to five years in the disease.” -P1, F
Reaction to diagnosis	8 (100%)
“I didn't, at that point, understand what it really was. I think the question I asked my dermatologist was, is this something that can kill me? And he answered, ‘most people die with it, not of it’. So that, to me, just kind of took the weight off, and I just went about life as if everything was fine.” -P2, M
Theme: Physical Consequences
Subtheme		n (%)
Pruritus		8 (100%)
“A lot of itchiness on my body. I was scratching all the time.” -P7, M
Pain		3 (38%)
“Sometimes, I get like, pins and needles. You know, used to get it, when it was bad, I used to get it all the time, for some reason. Back of my thighs and across my back. It was horrible.” -P8, M
Mobility		5 (63%)
“My wrist and my ankles, my, well, my feet swelled up, so it was hard to walk and things like that.” -P3, F
Physical appearance		3 (38%)
“The itch was very tormenting, and the deformity of my face was horrible. And the color of my skin darkened tremendously. I didn't look like the same person anymore. I looked like a beast at the beginning, the beginning was beastly.” -P5, F
Sleep quality		2 (25%)
“Before treatment it was... waking up, itching, just overall being uncomfortable.” -P3, F
Theme: Psychosocial Consequences
Subtheme		n (%)
Sense of lost identity		3 (38%)
“I was distraught because I watched myself just turn to another... another individual that I could not I can't explain it, but I was in disbelief to see that I just sit there and watch myself... just change to another person.” -P1, F
Self-consciousness		3 (38%)
“People look. You go to a ballgame, my son's a little league game, I sit in the bleachers with shorts and the person next to me looks at my knee. You know? That looks like a rash. Looks like, you know...” -P8, M
Social isolation		3 (38%)
“It affected my relationship with my friends. My coworkers, they, a lot of [them] cut themselves off, you know, from me. They stopped communicating with me. I would call, and they would not answer the phone.”-P5, F
Theme: Financial Implications
Subtheme			n (%)
Loss of employment			3 (38%)
“I didn't retire. I was let go. Right. And then because, then it came to a thing where I couldn't work these days, because [Doctor's name] had me there three days a week. So, it just turned out that I can't come into work.” -P8, M
Healthcare costs			2 (25%)
“Finances... yeah, 'cause doctor bills start rolling in.”-P3, F
Theme: Questions and Concerns Surrounding Diagnosis
Subtheme			n (%)
Disease etiology			4 (50%)
“I guess, probably like anyone else, just, what does it stem from? Basically, yeah, what is, what causes it? Yeah, basically, what's, what's the root cause of the disease?” -P4, F
Lack of cure			3 (38%)
“Like, the way they will spend money for other cancers, you know, they would give big money for other cancers to be researched, researched more. I don't think, I don't think cutaneous T-cell lymphoma is getting that acknowledge, that acknowledgement from the government. Because, because it's not, it's like, a rare disease, but a lot of people are having it now.” -P1, F
Time to diagnosis				2 (25%)
“If it was a perfect world... I would have liked to have been listened to. I felt like one of the reasons my diagnosis took as long as it did, like, to form a diagnosis, is because I'm a black woman in America, and I feel like black women aren't taken serious in the medical field.” -P3, F
Theme: Healthcare Experience
Subtheme				n (%)
Access to information				7 (88%)
“I feel I can pick up the phone and get an answer to whatever question I might have. So, that's very reassuring.” -P2, M
Quality of care				5 (63%)
“… [H]is bedside manner is, he's like, so enthusiastic about treating you, you know? And like I said, detail, it was so, I mean, he went through my whole PET scan. I had a PET scan done from my forehead to just above my knees. And he went through every single inch of that PET scan with me and my wife in full detail.” -P8, M
Multiple therapies				3 (38%)
““’You did this one. You did that. Oh, you had an allergic reaction. Okay, now this is the next one’... am I a guinea pig or something? What are we, trying me out?” -P5, F
Theme: Coping Mechanisms
Subtheme				n (%)
Self-acceptance				3 (38%)
“I had to get to a part where I acknowledge what it was and stop being in denial, just acknowledge and say, okay, it's there. I have to find a way to live with it and don't let it be a part of me.” -P1, F
Adaptability				5 (63%)
“No, no, I mean, it, it gets me a little disappointed when I realize I can't do everything I used to do,but other than that, you know, you just try a little harder, that's all.” -P2, M
Sharing experience				3 (38%)
“I appreciate you giving me the opportunity to share. And actually, it really felt good, you know, explaining myself in the questions and it just... I felt good about it, about sharing what I've been going through for the last five years.” -P5, F
Theme: Sources of Support
Subtheme				n (%)
Family				6 (75%)
“My wife and my three sons...” -P7, M
Medical professionals				5 (63%)
“I mean, health professionals, definitely, I think I have a great team of people working around me. I couldn't say more about them.” -P2, M
Faith				4 (50%)
“I guess that's why I don't really worry, or it doesn't really bother me. Because, you know, I know it's in God's hands. And I mean, what else can I do but do what I need to do?” -P4, F
Therapist				1 (13%)
“Having a support system, seeing a therapist, my faith.” -P3, F

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Reviews received at journal
02 May, 2022
Reviewers invited by journal
16 Apr, 2022
Editor invited by journal
08 Apr, 2022
Editor assigned by journal
21 Mar, 2022
First submitted to journal
16 Mar, 2022

You are reading this latest preprint version

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

Status:

Version 1

Abstract

Introduction

Methods

Recruitment

Study Design and Analysis

Results

Participant Demographics

Thematic Analysis

Diagnosis Experience

Physical Consequences

Psychosocial Consequences

Financial Implications

Questions and Concerns Surrounding Diagnosis

Healthcare Experience

Coping Mechanisms

Sources of Support

Discussion

Conclusion

Declarations

References

Tables

Status:

Version 1