Facilitators and Barriers to the Timely Diagnosis and Treatment of Melanoma in Latino Persons

Key Points

Question

What barriers and facilitators influence timely diagnosis and treatment of melanoma in Latino individuals?

Findings

In this qualitative study of 20 Latino patients, key barriers included low awareness of melanoma and health insurance creating delays in referral and receipt of care. Facilitators included patient self-advocacy and linguistically appropriate health care.

Meaning

This study reveals multiple modifiable factors affecting timely melanoma diagnosis and treatment in Latino patients.

This qualitative study identifies the facilitators and barriers Latino patients face prior to melanoma diagnosis and treatment.

Abstract

Importance

While mortality from melanoma has decreased in non-Hispanic White individuals over the last decade due to new and effective therapies, disparities in survival remain for Latino populations. Latino patients have lower overall incidence of melanoma than non-Hispanic White patients but are more likely to be diagnosed with thicker, more advanced tumors, leading to higher mortality.

Objective

To identify the facilitators and barriers Latino patients face prior to melanoma diagnosis and treatment and to inform strategies that expedite care and improve survival rates in this population.

Design, Setting, and Participants

This qualitative study used reflexive thematic analysis of interviews with Latino patients with melanoma of any stage at diagnosis conducted in Los Angeles County, California, between May and November 2023. Patients were identified from the California Cancer Registry, part of the Surveillance, Epidemiology, and End Results Program.

Main Outcomes and Measures

A semistructured interview guide designed to explore multiple themes related to potential barriers and facilitators to timely diagnosis of melanoma among Latino patients.

Results

Of 20 included Latino patients with melanoma, 13 (65%) were female, and the median (range) age was 56.5 (41-79) years. Half of the interviews were conducted in Spanish, and 15 participants (75%) were diagnosed at an early stage (in situ or regional). A total of 6 themes were identified: 2 facilitators, including patients as advocates for their health care and linguistically appropriate care, and 4 barriers, including barriers to timely care due to health insurance procedures, delays in accessing specialty referral, low awareness of melanoma prior to diagnosis, and a lack of linguistically appropriate care.

Conclusions and Relevance

This qualitative study identified multifaceted challenges faced by Latino patients as they seek both diagnosis and treatment of melanoma. Findings suggest several recommendations to accelerate time to diagnosis and prompt initiation of treatment to reduce disparities experienced by this patient population.

Introduction

While melanoma mortality has declined among non-Hispanic White individuals,¹ survival disparities persist for Hispanic/Latino populations. Latino populations have lower incidence of melanoma but are diagnosed at later stages, leading to higher mortality.^2,3 Latino individuals are the largest racial or ethnic group after non-Hispanic White individuals in the US, making up more than 63 million people, or 19% of the population. Consequently, despite lower incidence rates, the absolute number of melanoma cases and related deaths in this population represents a significant public health concern.

Early diagnosis and prompt treatment are critical for improving melanoma survival.^4,5 Barriers to timely detection and treatment include low awareness among patients and health care professionals, low socioeconomic status and education, limited access to dermatologic care, and lack of insurance.^{6,7,8,9,10,11,12,13} Latino patients face additional challenges, such as persistent skin cancer knowledge gaps and barriers to care.^14,15,16 Although Latino patients have higher rates of melanoma types with poorer outcomes, such as acral and nodular, superficial spreading melanoma is the most common subtype in both Latino patients and non-Hispanic White patients.^17,18 Thus, beyond clinical factors, disparities in awareness and access may influence timing of diagnosis and treatment for Latino patients.^{19,20,21,22,23,24,25}

This qualitative study examined the experiences of Latino patients with melanoma to elucidate their journey through the diagnostic and treatment phases. Specifically, we asked about facilitators and barriers patients encountered and organized findings at the individual, cultural, and health care system levels to inform future intervention strategies to accelerate melanoma diagnosis and treatment for Latino patients.

Methods

Cases and demographic data were identified from the Los Angeles County Cancer Surveillance Program, a population-based registry that is part of the Surveillance, Epidemiology, and End Results Program. Eligible patients were Latino individuals of any race, 18 years and older, not known to be deceased, and diagnosed with cutaneous melanoma in Los Angeles County after 2018. Latino ethnicity was determined using the North American Association of Central Cancer Registries Hispanic-Latino Identification Algorithm. Cases were identified using the Surveillance, Epidemiology, and End Results Program classification for melanoma of the skin (code 25010). The study was approved by the California Protection for Human Subjects Institutional Review Board, and all participants provided verbal informed consent. This study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) 32-item reporting guideline to ensure study quality and rigor.²⁶

Interview Guide

An interview guide was developed to ask open-ended questions about patients’ experiences in (1) their pathway to melanoma diagnosis; (2) barriers and facilitators to obtaining needed care, including referrals to other clinicians; (3) patients’ experience and satisfaction with their health care; and (4) general knowledge of and attitudes towards melanoma among themselves and their larger community. Questions were informed by a literature review and clinical insights provided by a dermatologist (A.B.C.) with experience working with the patient population. After development, the interview guide was professionally translated into Spanish. The interview guide can be found in the eAppendix in Supplement 1.

Procedures

Eligible participants were recruited to the study via telephone and then interviewed by a bilingual staff member with qualitative training (P.M.). Participants were scheduled for a one-on-one interview via Zoom (Zoom Communications) or telephone, conducted in Spanish or English according to their preference. Before participating, they were provided with an information sheet describing the study’s purpose, risks, and benefits. Verbal consent was then obtained for participation, recording of the conversation, and the use of anonymous quotes in publications. Interviews were conducted between May and November 2023 and lasted approximately 1 hour; each participant was interviewed only once. No field notes were recorded. Upon completion of the interview, participants received a $20 gift card. All interviews were recorded and transcribed and translated professionally.

Statistical Analysis

Reflexive thematic analysis was used in which codes were developed deductively from the interview guide and inductively from the data iteratively.²⁷ A systematic process was used in which team members initially read 5 interviews and created analytic memos for each to capture major points. These notes were used to develop an initial set of themes. Transcripts were then uploaded into Dedoose version 9.0.107 (Sociocultural Research Consultants), a qualitative data analysis software program. The first 3 transcripts were double coded to ensure consistency (with κ > 0.70). Once adequate consistency was met, data coding was conducted by 4 researchers (K.A.M., P.M., R.A., and G.M.), with each transcript independently coded by 2 researchers. Thematic saturation was discussed throughout the coding process to ensure comprehensive coverage of key concepts. Coding discrepancies were discussed by the team and resolved. After coding was complete, a final set of themes was established. Interviews were not returned to participants for additional comment or correction, nor were participants asked to provide feedback on study findings.

Results

We prioritized enrolling individuals with invasive tumors (n = 100). Unable to reach our target of 20 patients, we expanded eligibility to all tumor stages (n = 57). Of these, 20 (12.7%) completed interviews, 78 (49.7%) declined, 49 (31.2%) were lost to follow-up, and 10 (6.4%) were deceased.

Participant characteristics are shown in the Table. Of 20 included Latino patients with melanoma, 13 (65%) were female, 7 (35%) were male, and the median (range) age was 56.5 (41-79) years. Overarching themes of facilitators and barriers are included in the Box. Additional quotations can be found in the eTable in Supplement 1.

Table. Sample Characteristics of 20 Included Latino Patients With Melanoma.

Characteristic	Patients, No. (%)
Sex
Female	13 (65.0)
Male	7 (35.0)
Hispanic descenta
Mexican	8 (40.0)
Central or South American	2 (10.0)
Other/unspecified descent	10 (50.0)
Age at diagnosis, y
40-59	13 (65.0)
60-79	7 (35.0)
Nativityb
Not US-born	9 (45.0)
US-born	1 (5.0)
Unknown	10 (50.0)
Language
Spanish	10 (50.0)
English	9 (45.0)
Spanish and English	1 (0.05)
Socioeconomic status
Lowest	8 (40.0)
Lower-middle	3 (15.0)
Middle	4 (20.0)
Upper-middle	4 (20.0)
Highest	1 (5.0)
Insurance status
Private insurance	2 (5.0)
Health maintenance organization/manage cared	9 (45.0)
Medicare	3 (15.0)
Medicaid	5 (25.0)
Insurance unspecified	1 (5.0)
Uninsured	0
Stage at diagnosisc
In situ	7 (35.0)
Localized	8 (40.0)
Regional	2 (10.0)
Distant	0
Unstaged or unknown	3 (15.0)

^a Latino ethnicity was determined using the North American Association of Central Cancer Registries Hispanic-Latino Identification Algorithm.

^b Nativity was determined through Surveillance, Epidemiology, and End Results Program data and confirmed by self-report.

^c Cancer stage derived from Surveillance, Epidemiology, and End Results Program data.

Box. Major Themes of Facilitators and Barriers Impacting Time to Melanoma Diagnosis in Latino Patients.

Facilitators

• Patients as self-advocates for their health care

• Linguistically appropriate care

Barriers

• Health insurance approvals delaying care

• Delays in accessing specialty referral

• Low awareness of melanoma prior to diagnosis

• Lack of linguistically appropriate care

Facilitators to Timely Diagnosis and Treatment

Patients as Self-Advocates for Their Health Care

When seeking diagnosis, patients who self-advocated were able to obtain faster referrals, diagnoses, and treatment. One participant said, “When I had the feeling something was wrong, I immediately went to get checked. The main thing was that I insisted. I asked the doctor twice to please give me a referral to see a dermatologist.”

Linguistically Appropriate Care

Explanation of the diagnosis and care plan in the patient’s preferred language enhanced comprehension. One participants said, “Thank God, they explained it to me well. Both written and spoken. In English and in Spanish. They wrote down everything for me. What everything meant. What chemo was. What a PET [positron emission tomography] scan was. And they explained everything to me.”

Barriers to Timely Diagnosis and Treatment

Barriers to Timely Care Due to Health Insurance Procedures

Patients described long wait times for approval from their health insurance plans. One participant said, “So, it was a melanoma. But [Medicaid] took too long in giving the order for them to operate on me quickly. Why, if they had already detected that I had cancer, didn’t they act quickly?” Patients with public insurance or managed care reported trying to change their plan to what they considered good insurance (such as preferred provider organization [PPO]) to expedite care. One participant said, “It was annoying because you have to wait so long when you don’t have good insurance, you know? If you have to get a referral, you can’t go straight to the dermatologist. Once I got the PPO insurance, then everything went so fast because we had PPO, and they could just book everything. ”

Delays in Accessing Specialty Referral

Patients described delays in referrals from primary care clinics or physicians. One participant said, “[The referral process from primary care physician to specialist care] must have been about 6 months and I went to 2 different appointments. Then 3 months later in my second appointment, that’s when she [referred me]. All of that must have taken around 8 months.” In other cases, participants described gaps in the coordination of care that left them uncertain of a next step. One participant said, “[The doctor said], ‘I’m going to refer you to a specialist.’ But she never did. I didn’t know what kind of specialist took care of something like that. Since I didn’t know, I didn’t look for one.”

Low Awareness of Melanoma Prior to Diagnosis

Patients discussed little awareness of melanoma before diagnosis. One participants said, “It was the first time I heard the word [melanoma]. That’s why I didn’t get worried, I thought, ‘that’s not harmful.’ When I saw everything they did to my foot, I started worrying. I began to understand what a melanoma was, and that it is very dangerous.” Some patients linked low awareness or perceived melanoma risk to Latino culture. One participant said, “In fact, before [my diagnosis], I didn’t believe in [skin cancer]. Even less being Latino because you think that, because of the skin color, you won’t get melanoma. I never thought you could get this being Latino.”

Lack of Linguistically Appropriate Care

Patients reported a lack of linguistically appropriate care impeded understanding. They had to ask for materials in Spanish or receive translation from family. According to one participant, “When I was told I had melanoma, the surgeon gave me a piece of paper with information about melanoma. There were some words that I didn’t know… but I was able to understand a little. It was given to me in English first, but then I asked for it in Spanish because I couldn’t understand much.” Another participant said, “My husband translated for me. When he’s with me, I’m able to understand because he explains it to me. But when I had to go alone, I had to ask more questions and I had to look for someone that spoke both languages.”

Discussion

We interviewed Latino patients with melanoma to understand the facilitators and barriers they encountered as they sought melanoma diagnosis and treatment. Our study provides insight into patients’ experiences across sociocultural levels.

Individual Level

Latino patients with melanoma who advocated for care moved more quickly toward diagnosis, often by insisting on biopsies and referrals. Such patient activation is associated with improved outcomes across diverse patient populations.²⁸ However, Latino patients typically have lower patient activation than non-Hispanic White patients, reflecting lower US acculturation and less confidence communicating during medical encounters.²⁹ Deference to physician authority, linked with respeto (a cultural value in Latino communities emphasizing respect and deference toward authority figures³⁰), may limit Latino patients’ willingness to advocate for action within the medical system. Strategies to increase patient activation may help accelerate time to melanoma diagnosis and treatment.²⁹

Cultural Level

Two aspects of patient experience were linked to cultural background: understanding of their diagnosis and treatment was facilitated by access to linguistically appropriate care, and low awareness of melanoma was noted as a barrier to seeking care.

Access to Spanish-speaking clinicians, interpreters, and materials improved Latino patients’ understanding and experience, while lack of such resources led to poorer comprehension.³¹ Despite legal requirements and patient preferences, many relied on family members to interpret. These gaps highlight the need for consistent access to qualified medical interpretation to improve timely melanoma detection and treatment.³²

Latino patients reported low awareness and perceived risk of melanoma, consistent with prior studies.^33,34,35 Communicating risk for this population can be challenging, as melanoma is rare (1 in 200 compared with 1 in 33 for non-Hispanic White individuals).³⁶ Although the US Preventive Services Task Force recommends skin cancer counseling only for adults with risk factors, counseling remains common in primary care where clinicians often first evaluate suspicious lesions.^37,38 To reduce disparities, Latino patients need tailored risk communication, and clinician education is needed on melanoma in diverse skin types.

Health Care System Level

Patients reported that health insurance coverage and access to specialty referrals were key barriers to timely melanoma diagnosis and treatment. The association between insurance and later stage at diagnosis of melanoma is well-documented, with patients with public or no insurance more likely to be diagnosed at later stages.^{34,39,40,41,42} Patients perceived that insurance status influenced the timeliness of their care, with patients wanting better insurance to expedite diagnosis and treatment. Latino populations are the largest uninsured group in the US, with more than one-third on Medicare or Medicaid.⁸ Further study is needed to understand how specific insurance types and policies affect melanoma outcomes in this population.

Limitations

This study has several limitations. The small sample of individuals of Mexican and Central American descent from Los Angeles County may not represent the broader US Latino population or its diversity. Low recruitment rates may have introduced selection bias. Participants may have conflated delays in diagnosis, staging, and treatment. Future research should include diverse Latino groups and patients with advanced disease. Including health care professional perspectives could also inform interventions.

Conclusions

Our qualitative study reveals barriers to melanoma diagnosis in Latino patients, including low awareness, lack of linguistically appropriate care, insurance-related issues, and referral delays. Improving outcomes will require multilevel interventions focused on patient activation, clinician education, and strengthening linguistically concordant navigation and education in clinical settings.

Supplement 1.

eTable. Selected Representative Quotes by Theme

eAppendix. Qualitative Interview Guide

Supplement 2.

Data Sharing Statement