Barriers to Care and Opportunities for Improvement: Adolescents and Young Adults with Cancer in Central America,Mexico,the Caribbean,and Peru

Abstract

Background:

Little is known about the barriers to care and resources needed for adolescents and young adults (AYAs, 15–39) with cancer in low- and middle-income countries, where most of these patients live. We aimed to address this gap through interviews with pediatric and adult hematologists/oncologists.

Methods:

We enrolled physicians from nine countries in Central America, Mexico, the Caribbean, and Peru. Semistructured interviews were conducted in Spanish, recorded, transcribed, and translated into English.

Results:

Twenty-eight respondents provided over 26 hours of data, and 46% were adult hematologists/oncologists. We identified multiple barriers in caring for AYA patients, including clinical, psychosocial, financial, and educational barriers. These include a lack of a multidisciplinary team focused on AYA patients, mental health support, a dedicated space for this patient population, high treatment costs, travel distance to the hospital, and discontinuity of care due to age limits. In addition, there are competing demands for resources with adult oncology, delays in diagnosis, and patients’ abandonment of treatment. Potential opportunities for improvement included having multidisciplinary AYA oncology teams, standardized treatment protocols, AYA-specific cancer registry, dedicated space, mental health support (e.g., support groups), improving access to health insurance, patient and physician education, and vocational assistance.

Conclusions:

This study identifies substantial barriers to the care of AYA patients with cancer in Central America, Mexico, the Caribbean, and Peru. It also highlights key areas for potential intervention to improve outcomes in this population. These key findings can guide cancer control programs in Latin America as they begin to include AYAs.

Keywords

adolescent and young adult low- and middle-income countries Latin America barriers facilitators

Introduction

Adolescents and young adults (AYAs: ages 15–39 years) with cancer deserve access to high-quality oncology care regardless of where they live. Over 1 million AYAs are diagnosed with cancer globally each year.¹ However, children and older adults have been the focus of cancer control and research development for decades, often leaving the care of AYAs with cancer behind.^1,2 A significant “AYA gap” was identified, marked by a lack of improvement in cancer outcomes for the 15–39 age group, compared to improvements achieved for younger and older populations in the United States and in other high-income countries (HICs).³ Recognition is emerging of similar disparities in outcomes among AYA patients with cancer globally, particularly in low- and middle-income countries (LMICs) in Central America, Mexico, the Caribbean, and Peru.^1,4,5 In 2017, the World Health Assembly released a statement recognizing that cancer control should span all age groups and that there are subgroups that experience inequity in screening, timely diagnosis, and treatment globally, particularly adolescents.⁶ There is a call and opportunity to more explicitly include AYA patients with cancer in developing and expanding cancer control programs in Latin America.

Latin America is a region that has made major strides in socioeconomic development, health care, and cancer control programs.^7,8 In addition, many of these countries have specialized childhood cancer programs.⁸ However, little is known about where AYAs are treated and the barriers impacting their care, including the attitudes and opinions of those providing care to AYAs with cancer in Latin America. This knowledge is essential to identify program needs, appropriately allocate resources, and for capacity building to adequately address the needs of AYAs with cancer in these countries. Therefore, we conducted semistructured interviews of providers caring for AYAs with cancer in nine countries in Central America, Mexico, the Caribbean, and Peru, exploring barriers and facilitators for caring for these patients.

Materials and Methods

Participants

We recruited a convenience sample of pediatric and adult hematologists and oncologists from Mexico, Central America (Guatemala, Panama, Honduras, Costa Rica, El Salvador), the Caribbean (Dominican Republic, Haiti), and Peru (Global Initiative for Childhood Cancer Index Country) (Fig. 1). Recruitment occurred via email through contacts provided by physicians in each country, resulting in a snowball effect. Participants who did not speak English or Spanish were excluded. Recruitment continued until thematic saturation was reached. Participants consented verbally, and this study was approved by the University of California Davis Institutional Review Board.

FIG. 1.

Map of participants by country.

Interview guide

The interview guide was developed based on questions and answers from a previously deployed survey to pediatric oncology physicians in Central America, Mexico, the Caribbean, and Peru (Supplementary Data) and was codeveloped with physicians from these countries. The guide included initial demographic questions followed by open-ended questions to gather information on barriers and facilitators of AYA care in their respective countries in the following domains: (1) country level (e.g., government regulations), (2) center level (e.g., center type, source of funding), (3) individual level (e.g., education, years of experience), and (4) patient level (e.g., insurance, type of cancer), along with any domains the participants believed should be added. The interview guide was reviewed by pediatric oncologists (E.A., A.R., and P.F.) and a qualitative researcher (M.G.). The interview guide was then piloted, resulting in minor modifications to the guide.

Participant interviews

Interviews were conducted over the phone or via an online platform (WebEx or Zoom) per participant preference. Interviews were approximately 60 minutes and conducted in Spanish by an experienced clinical research coordinator and native Spanish speaker (C.R.). Interviews were transcribed and translated from Spanish to English through GMR transcription services, and any identifying information was removed.

Data analysis

Three researchers (E.A. [pediatric oncologist], H.N. [clinical research coordinator], M.G. [staff analyst]) performed inductive thematic analysis to identify major overarching themes. Researchers utilized open coding to develop preliminary codes independently and later met to discuss the initial codes and develop a codebook. The codebook was then used by two of the researchers (E.A., H.N.) to perform line-by-line coding of transcripts using Dedoose (Manhattan Beach, CA) in parallel. They met iteratively to develop consensus surrounding the coding of the transcripts and reach intercoder agreement. The researchers then used thematic analysis to construct themes and subthemes. Final themes, subthemes, and supporting quotes were reviewed by a qualitative researcher (M.G.) and pediatric oncologist (P.F.) not involved in the coding and the interviewer (C.R. [clinical research coordinator]) for face validity.

Results

Interview participants

Twenty-eight participants representing nine countries were interviewed from September 2019 to August 2020 and August 2021 to May 2022, providing over 26 hours of data (Table 1). Thirty participants were approached, all accepted, and two did not follow up with scheduling. Adult hematologists/oncologists made up the largest group (46%), followed by pediatric hematologists/oncologists (43%); 43% specialized in solid tumors. Fifty-three percent worked solely in public hospitals, whereas 30% worked in private and public hospitals, and 7% worked in private hospitals only. The mean number of years of experience was 14.2 years (standard deviation 7.1).

Table 1.

Characteristics of Interviewees

Characteristics	Total participants (n = 28)N (%)
Profession
Medical hematologist	2 (7)
Medical oncologist	11 (39)
Pediatric hematologist	2 (7)
Pediatric oncologist	10 (36)
Pediatric surgical oncologist	2 (7)
Palliative medicine physician	1 (4)
Specialty
Hematological malignancies	6 (21)
Solid tumor	12 (43)
Both	10 (36)
Clinical practice^a
Public	16 (53)
Private	2 (7)
Combination	9 (30)
Unknown	3 (10)
Years in practice
0–5	5 (18)
6–10	5 (18)
11–15	5 (18)
>15	13 (46)
Mean	14.2 (STD 7.1)
Country of training^a
Mexico	9 (25)
Central America	8 (22)
South America	6 (17)
Caribbean	3 (8)
Europe	7 (19)
Other	3 (8)
Country of practice
Mexico	7 (25)
Central America	12 (43)
Caribbean	4 (14)
Peru	5 (18)

Can have more than one.

Qualitative themes and subthemes

The perspective of the physicians caring for AYA patients elucidated multiple challenges of providing care for AYAs with cancer in Central America, Mexico, the Caribbean, and Peru. We identified five themes (1. Collaboration between health care teams, 2. Barriers to delivery of treatment, 3. Lack of needed resources, 4. Unmet psychosocial needs, 5. Unmet financial needs) and 13 subthemes listed in Table 2 and expanded upon below. Similar themes were present in interviews of both pediatric and adult hematologists/oncologists.

Table 2.

Themes and Subthemes and Illustrative Quotes of Physicians’ Perceptions of Barriers to Care for Adolescents and Young Adults with Cancer in Central America, Mexico, the Caribbean and Peru

Theme	Subthemes	Quotes
Collaboration needed between health care teams to address AYA-specific needs	Need for multidisciplinary team	“Many times we are in a situation where the father wants we make an amputation, I’m talking about sarcomas or tumors where we need to do an amputation, the mother doesn’t want, the patient doesn’t know, so it turns—because we don’t have that support of psychologists, social workers, the process of knowing who will do the physical therapy later with these patients, their rehabilitation so it becomes tedious(17).”“Well, uh, I think it’s a special population that is vulnerable and very few people empathetic and sensitive enough to following-up with these adolescents. Um. I think we have—we have to work as a team, not—it’s not just the pediatric oncologist or the adult oncologist, but there has to be communication between both parts. But also, working with a multidisciplinary team. Obviously, with other specializations such as reproductive medicine, cardiology, psychology, dermatology, palliative care(8).”
	Missing collaboration between adult and pediatric oncologists	“[There is a] lack of availability that exists with medical staff in order to be able to share opinions between pediatric and adult hematology oncology […] Sometimes, it’s very hard for us to meet up with them [adult oncologists] and come to an agreement with them. That’s the hard part(12).”“[Referral] depends very much on the adult oncologist who many times, doesn’t refer the teenager that could benefit from it [to the pediatric institution(6).”
Barriers to delivery of treatment to AYAs with cancer	Abandonment	“[We] need to have more, social, psychological support because on occasions, we have abandonments, especially when we have to do amputations or mutilating surgeries. So, I think we maybe need to reinforce the social issue, a little(8).”“In the case of adolescents, it is the psychological problems, problems of adolescence, acceptance. We have, uh, a large rate of abandonment by this group right now(12).”
	Delay in diagnosis	“Something which is very disturbing is that the patients come with advanced illnesses, with very big tumors and a third of the patients I assist have metastasis. So, well, this is dreadful for their life prognosis, right(9)?”“What, what is sad or disturbing about them is that, in general, this illness behaves more aggressively. We generally diagnose patients with […] cancer when they are in an advanced state(15).”
	Discontinuity of care	“When I can’t make an appointment for the patients I operated on after they turn 18 years old, I lose the follow-up with the patient. So, I consider it very important for hospitals—even if they’re children’s hospitals—[…] they should have AYAs clinics to be able to follow-up with the patients and not lose watching over them(11).”“The majority of the places where childhood cancer is seen, the people who don’t have social security, for example, they are seen up to the age of 18. But at 18 years old, you stop being a pediatric patient. So, they have to be sent to hospitals for adults[…] that’s a long bureaucratic process because it’s a lot of paperwork for the patient to be received in another hospital in order to continue their chemotherapy treatment(8).”
Lack of needed resources for AYA cancer care	Lack of clinical space	“First, the space. The physical space we have—I have few beds, there are times that it’s difficult for me to admit patients(8).”“Well, if they’re under the age of 18, we take them all in, and sometimes the obstacle we have is that the number of beds we have in the unit sometimes is not enough(5).”
	Dedicated facilities	“Especially because teenagers need privacy—they also need to be with their parents, but it’s important that they have their isolated cubicles, while in the pediatric [hospital], they’re in exclusive spaces, but they have glass, and they can all see each other, while they require a little more privacy(6).”“They need a proper structure, unfortunately our hospital wasn’t made to treat younger children, so, you can see, for example, the use of the toilet, there is no privacy in this, so it’s difficult because for teens and young adults, well… anyone over 12 needs to have more privacy(14).”
	Competing priorities	“One of the things that can be an obstacle for patients in this population is that, ... we don’t see them so often and they have to compete with other pathologies, such as breast cancer, gastrointestinal cancer, so when we ask for resources within the institution to have therapeutic options for this group of patients it can be more difficult to get them, it is a population that sometimes goes unnoticed, and by going unnoticed, […] sometimes there is not the urge of the medical team to request the requirements or the therapeutic options for these patients(16).”“I think there should be an institute, possibly independent, to treat these patients(14).”
Unmet psychosocial needs in AYAs with cancer	Educational support	“Well, I think that [we] create a service for adolescents and young adults, to give greater importance to the social aspect […] help the youth to not lose schooling by maybe bringing in a teacher or a tutor so that they can help them to present their tests in the university and so that they’re able to continue studying, and so that they don’t lose their insurance(8).”“The teaching, strengthening schooling for the children would be useful. Someone who—yes, who oversees the academic aspect. We shouldn’t forget the academic aspect of adolescents(8).”
Unmet psychosocial needs in AYAs with cancer	Mental health support	“In hospitals, there isn’t someone who they can turn to in order to have support. So, they’re somewhat alone. They’re alone. So, that makes patients not go [to clinic], or not take their medications and this, we have seen, makes them have more relapses, even though, as doctors, we give them the right treatment(10).”“I think that they require emotional support […] a psychologist and a psychiatrist together to be able to eh, help them understand their illness well(9).”
Unmet financial needs in AYAs with cancer	Treatment costs	“They usually need greater financial support because we have, in fact, children or teenagers who are abandoned by their families because the diagnosis is difficult for them, and so, uh, well, the dilemma of them not being able to [support] themselves begins(4).”“When the patients don’t have financial support—the catastrophic harm—they abandon the treatment. So, we have a high incidence of abandonment(11).”
	Travel and accommodation	“The economic aspect is very important. I think that as there are patients who don’t have an arm or a leg, well, that also makes it harder for them to come from their place of origin. You know that [country], it’s a very big country ... So, they need to come in a truck mainly […] they have to take a taxi or the public transportation and well, that limits a lot the access to their medical assistance(9).”“A patient who comes from a Province that is 12 hours away from the facility and who doesn’t have any place, who doesn’t have family in the capital. The foundation can’t give them housing, because as I’ve told you, the foundation is poor, and it doesn’t yet have the capacity to build housing. And here, the hospital is a place that also doesn’t have a shelter. And the patient already received chemotherapy, and they have to go [home](3).”
	Lack of insurance coverage	“And other situations that when adolescents turn 18 years old, in the hospital, […] if they’re not in school, they lose the medical service, they lose the [insurance] service. So, uh, it’s a problem because I try to give them extensions on occasions, but sometimes I can’t. So, this lack of coverage when you’re over the age of 18 and you’re not in school, it’s difficult to continue with the service here(8).”“In [country], only 3 percent of the population has insurance for medical costs—private. And the rest of the population, 55 percent is an open population, without social protection and are treated in hospitals that are financed by federal, governmental budgets(11).”

AYA, adolescents and young adults.

Collaboration needed between health care teams

Many providers stated the need for a multidisciplinary team inclusive of social workers, psychologists, nutritionists, and spiritual support services. “The management of cancer requires a multidisciplinary group. And if it is regarding a teenager, many times it requires greater support in the psychological and social aspect (4).” They also acknowledged the limitations of implementing this in their respective institutions, as they do not always have these support services available. “Unfortunately, public hospitals in poor countries are full of needs, and generally pragmatic ethical decisions are made according to the few resources they have (14).”

In addition, they cited that they were not always able to collaborate with their adult oncology colleagues, which created missed opportunities to improve for this patient population. Caring for AYA patients with a multidisciplinary team of providers, including adult and pediatric specialists, has been identified as an ideal goal in these interviews, but not one that is often feasible.

Barriers to Delivery and Completion of Treatment

Interview participants discussed different barriers to the delivery and completion of planned treatment. Abandonment of therapy secondary to social factors was one such barrier. For example, one participant stated, “[Patients] are starting their lives—starting their families, so, they either have to stop working or stop studying […] There is a lot of abandonment because of these circumstances. They start to feel a little well and they think they’re cured and they don’t come back (7).”

Delays in diagnosis were also barriers to delivering appropriate treatment. Due to having to travel from far distances to the hospital or a lack of imaging equipment, some patients receive a diagnosis much later. As one participant described, “In general, an MRI has a waitlist that at times becomes an obstacle to be able to continue and make decisions about a patient’s pathology (16),” causing treatment to be postponed.

A barrier cited by many of the pediatric hematologists/oncologists is the discontinuity of care of AYAs who become older during their care, beyond the maximum age allowed to be treated at a particular institution. For example: “When we have a child who reaches the age of 15, many times, we try to continue the ambulatory treatment, but when the patient requires hospitalization, we are not authorized to admit them into the hospitalization area of children; we have to send them to the Oncology Institute by force (4).” Age cutoffs for care of patients impose substantial barriers; however, these could potentially be overcome by collaboration between pediatric and medical oncology health care teams within and across institutions.

Lack of needed resources

Three major areas of resource needs were identified: lack of clinical space, lack of dedicated AYAs facilities, and competing priorities.

First, participants identified a lack of clinical space for patients, including beds, imaging equipment, and clinic spaces. Several participants said that there was a lack of clinical space for all patients, not just AYAs. One said, “Sometimes, there are no beds to admit patients. There aren’t—that happens with adults, children, or whatever; sometimes there are no beds (10).”

Second, participants identified a lack of facilities specifically dedicated to AYAs. One participant commented on the unique need of AYAs to have their own space, saying, “It is definitely necessary to create a space for them. They can’t be around small children and they can’t be around people—older people. We have to change the environment so that the cancer treatment is less difficult for them (8).”

Third, competing priorities mean that resources to improve AYA treatment are often diverted to other areas that need improvement. These areas may not even be related to medicine; for example, one participant said, “The budget is limited by other competing priorities. For example, right now, the health budget has been reduced a little because crime control is another priority.” As another physician stated, “– We are not asking to sequence all the sarcomas or to have all the transfusions that exist in the world and all the chemotherapies available, but just with that it would mean a change in the attention for this group.”

Unmet Psychosocial and Educational Needs

A recurring theme was unmet psychosocial needs in this age group. With regard to the educational needs of these patients, many participants indicated that patients often fall behind in school because they do not have the support to continue: “Young people of their age, later deserting school, that’s another problem we have, because they lose valuable time of their studies, unfortunately […] usually, when they’re diagnosed, the family definitely takes them out of school, […] until their in full remission […]. They [the patient] don’t want to return to school, because they set back in years—they’re too old to go back to that school (1).”

There was also a noted lack of mental health support: “The obstacle doesn’t have much to do with the application of the treatment; however, it has to do with the support and follow up that these patients are given. I, as a doctor, am in charge of their health, but we are missing social workers, people who will accompany them (18).” One participant noted that there are many physician colleagues “that have difficulty understanding the psychology and family dynamic of the teenagers (11).” It was noted that increasing the mental health support for the AYAs with cancer and education for their providers on their specific needs could improve the overall care delivered to this unique population.

Unmet Financial Needs

Some of the most commonly identified barriers to care were financial barriers, including treatment costs, travel and accommodation needs, and lack of insurance coverage.

The financial impact and strain, especially treatment costs, placed on AYA patients with cancer were mentioned by all participants: “The patient doesn’t have money to pay, for example—for certain exams. Because here, in our center, even though it could be that they don’t pay much money (because less than three percent of the population has medical insurance), if they don’t have money to pay, we are not going to use a treatment because they can’t pay (3),” and “many times we have to wait for the patient to get the money to get their tests done (19).”

Needing to travel to hospitals for care and needing accommodation in these cities while undergoing care was an additional expense. One participant described, “Some patients take three or four days to get to the hospital by car. It’s impossible for them to continue with the treatment.” Another said, “My hospital is the place that gets people from several provinces and many times, families don’t have a place to stay.”

Finally, lack of insurance coverage was often a barrier to completion of treatment or receiving care:, “Medical insurance is hard to get here.” Another described a common situation in their country where, “A patient turns 18 years old and they lose their insurance, right? You have to treat them until they are 17 years old, with 11 months and 29 days. Yes, there have to be policies that favor the prolongation of coverage for vulnerable patients such as oncological patients. These barriers disproportionately affect patients who have lower socioeconomic status and are uninsured.”

Discussion

This study highlights the barriers to care for AYAs with cancer and identifies potential opportunities to improve care delivery for these patients. Through interviews of pediatric and medical hematologists or oncologists, we found financial, clinical, psychosocial, and educational barriers that limit AYA-focused care. While some barriers are universal throughout oncology care in Central America, Mexico, the Caribbean, and Peru, others are more pronounced or specific to AYAs with cancer in these settings and identify potential opportunities for intervention to improve the care of these patients (Fig. 2).

FIG. 2.

Barriers to care and opportunities to improve delivery of care to adolescents and young adults with cancer in Central America, Mexico, the Caribbean and Peru.

A review of the challenges of AYA cancer care in resource-limited countries showed that despite the socioeconomic growth experienced in Central America, Mexico, the Caribbean, and Peru over the past decades, poverty and inequity persist.⁹ For example, financial toxicity has been reported to impact AYA care in both LMICs and HICs, with one study demonstrating that approximately 30% of adult cancer survivors face financial difficulties, which disproportionally impact those under 39 years.¹⁰ These financial barriers contribute to patients abandoning treatment and forgoing or delaying medical care after cancer therapy.^10,11 Abandonment of treatment—whether failure to start or complete curative therapy—has emerged as a significant barrier, often due to a lack of health insurance, especially as patients age and lose coverage, or because of the need to work. According to the Pan American Health Organization, the main causes of abandonment of treatment in LMICs are late diagnosis and toxicity of anticancer drugs.^12,13 There is a lack of data on AYA treatment abandonment in Latin America and other LMICs due to the scarcity of population-based and even hospital-based cancer registries in this age group.¹⁴ This data gap hinders accurate estimation of AYA cancer incidence, mortality, and survival, preventing trend analyses and comparisons with HICs.⁹ A study in the United States found that approximately 9% of children under 15 years discontinue treatment in HICs. In contrast, abandonment rates have historically been substantially higher in upper-middle-income countries (41%), lower-middle-income countries (80%), and low-income countries (90%).¹³

Lessons can be learned from programs that have successfully reduced abandonment of treatment in children in LMICs.^15,16 For instance, the establishment of a Pediatric Oncology Program for children with acute lymphoblastic leukemia in a Brazilian city reduced treatment abandonment from 16% initially to only 0.5% recently. Key initiatives included providing essential support to parents, such as transportation, housing, and employment opportunities.¹⁷ Adapting such initiatives to address the specific needs of the AYA oncology population at diagnosis and throughout treatment could improve outcomes in these settings. In addition, there have been recent initiatives to improve the outcomes in childhood cancer overall through partnerships with ministries of health and non-governmental organizations.¹⁸ These types of partnerships could provide a framework for advancing AYA further in Latin America, and while not currently published, a few countries in Latin America are moving in this direction.

A recurring theme among pediatric and adult hematologists or oncologists and potential solution to improve support for these patients is a multidisciplinary team that includes psychologists, social workers, nutritionists, and physical therapists. Similar to findings in HIC settings, our study demonstrated that there are substantial unmet mental health needs in the AYA oncology population in these settings.^19,20 Providing continuous support, including psychological support from cancer diagnosis through survivorship follow-up, is vital in this population with unique psychosocial needs.^20–23 Physician participants emphasized the importance of consistent collaboration between teams as a strategy to enhance the care of AYAs with cancer in their countries. This collaborative approach has also been highlighted in studies conducted in HICs and could offer a roadmap to improve care in Latin America.^22,24,25 In the United States, a single center implemented a multidisciplinary AYA program that relied on collaboration between pediatric and adult oncologists, an oncofertility team, adult and pediatric psychologists, and AYA champions.²⁵ Over 3 years, the program significantly increased the proportion of AYAs referred for supportive care and psychology in both pediatric and adult oncology. Additionally, it led to improved discussions about fertility preservation and a higher proportion of AYAs undergoing fertility preservation consultations following referrals from both pediatric and adult oncologists.

A lack of dedicated space for this population was highlighted as a growing need in Central America, Mexico, the Caribbean, and Peru. Establishing dedicated clinical spaces and facilities tailored for AYAs receiving cancer treatment, as seen in several HIC settings, could help address the needs of this patient population. Further, developing a care model that incorporates AYA-focused strategies in low-resource settings is urgently needed to bridge the AYA survival gap.¹⁴ Several successful AYA programs have been implemented in HICs such as the United States, Canada, the United Kingdom, Australia, and Europe, which can serve as a foundation for adaptation in Latin America. These programs have improved access to health services and demonstrated improved patient-centered outcomes.

The need for education was a theme that ran throughout the study. Our study participants emphasized the need for enhanced educational and vocational support for AYAs. The intensity and adverse effects of cancer treatment often force AYA patients to pause their education, leading to challenges upon returning to school and feelings of falling behind their peers. Social workers and psychologists can assist these patients throughout this process.^22,23 However, the study participants did not think that the educational support should stop with the patients. It was noted that many physicians caring for AYAs with cancer struggle with understanding the psychological aspects and family dynamics involved. Therefore, there should also be support for physicians to receive training to better understand the unique needs of AYAs and improve their treatment. Enhancing education for patients, families, physicians, and the community could greatly improve the overall outcomes for this patient population for symptom management and time to diagnosis.

Limitations

This study has limitations, including the fact that physician participants were recruited through known personal contacts. These physicians may therefore be more invested in AYA care than other physicians in these countries and may therefore have opinions that are not as generalizable. In addition, while interview questions were focused on AYAs, it was not always possible to elucidate if a participant’s perspective was specific to AYAs or the cancer care landscape in that country in general. Furthermore, in our study, physicians reported that various patients are diagnosed with advanced-stage disease because of delays in seeking medical care due to long travel distances to the hospital or limited availability of diagnostic imaging services in their regions. The study population did not include interviews of primary care physicians or rural clinics, which may serve as referring centers and would be important additional perspectives to obtain in the future, particularly on how to prevent these delays in diagnosis. However, to the best of our knowledge, this is the first study to describe the perspectives of physicians treating AYAs with cancer in nine countries in Central America, Mexico, the Caribbean, and Peru, providing valuable insights into region-specific challenges and highlighting opportunities to improve early cancer diagnosis and access to care for this population.

Conclusions

In summary, our study identified several barriers to care to AYAs with cancer in Central America, Mexico, the Caribbean, and Peru, including clinical, financial, psychosocial, and educational barriers. Potential opportunities for improving care to AYAs in these settings include implementing a multidisciplinary team, fostering collaboration between pediatric and medical hematologists/oncologists, establishing dedicated clinical spaces, and enhancing education and training. Future studies should expand on our understanding of barriers and facilitators to care in AYAs with cancer in Latin America through the perspectives of AYA patients with cancer to improve care outcomes for this population.

Authors’ Contributions

All authors contributed significantly to the work reported. All authors have read and approved the final version of the article and agree to be accountable for all aspects of the work.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This study was funded by the Conquer Cancer Foundation Global Oncology Young Investigator Award, Genentech BioOncology Women Who Conquer Cancer (Conquer Cancer Foundation) Career Development Award, and Diversity Supplement 3P01CA233432-05S1 from the National Cancer Institute (RA).

Supplemental Material

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