Educational, financial, logistical, emotional, and social needs among patients with hepatocellular carcinoma

Abstract

Background:

Patient navigation has been proposed as a primary method of facilitating successful treatment and outcomes for cancer patients. In order to design a navigation program specific for HCC patients, the aims of this study were 3-fold: (1) to identify the needs of HCC patients, (2) to identify barriers to the successful treatment of HCC, and (3) to identify specific supports needed for the successful treatment of HCC.

Methods:

In-depth qualitative interviews, lasting 60–90 minutes, were conducted with 42 individuals, including 14 patients, 7 caregivers, 8 advocates, 2 research coordinators, and 11 providers. The specialty of the provider participants included Hepatology, Transplant Surgery, Medical Oncology, Radiation Oncology, and Interventional Radiology. Advanced practice providers, social workers, and nurse navigators were also included. Patients, caregivers, and providers were recruited from 2 healthcare systems in South Florida. Advocates were recruited through collaboration with the Global Liver Institute and the Hepatitis B Foundation.

Results:

The interviews identified 5 overarching themes representing the navigation needs of HCC patients: (1) Education/Health Literacy, (2) Financial Resources, (3) Coordination of Care, (4) Emotional/Mental Health Management, and (5) Social Support. These overarching themes were composed of various subthemes, which further delineated the specific needs that patients and caregivers have in the context of their HCC treatment.

Conclusions:

This study provides valuable insight into the needs of patients with HCC and their caregivers. Key stakeholders in the field of HCC provided valuable insights into the multidimensional needs of patients with HCC, identifying areas to target with high-quality interventions. To best meet the treatment needs of patients with HCC, successful navigation should include interventions targeted at addressing each of these areas of need.

INTRODUCTION

HCC, the sixth leading cause of cancer worldwide, ranks third for cancer-related mortality. ¹ In the United States and globally, there are substantial disparities in HCC risk.^2,3 Non-Hispanic White individuals have a lower risk of HCC with the incidence of 4.6%, compared to 8.1% in non-Hispanic Black, 9.1% in Asian/Pacific Islander, 9.8% in Hispanic, and 11.4% in American Indian/Alaskan Native individuals. ³ Survival after HCC diagnosis also varies by race and ethnicity. In multiple retrospective studies, Black patients were more likely to be diagnosed with advanced HCC^4–6 and have significantly shorter survival when compared to White patients.^4,5,7,8 Despite recognition of these disparities since 1999, ⁹ progress in understanding the factors contributing to these inequities has been limited. This lack of knowledge impedes the development and implementation of effective strategies to alleviate the disproportionate physical and economic impacts of HCC on vulnerable populations.

Socioeconomic factors such as poverty and insurance status impact engagement with the healthcare system and may contribute to observed disparities in HCC risk and survival.^5,6 However, other drivers of disparate outcomes remain largely unknown due to the limited ability of retrospective studies to explore these drivers. In response to these persistent disparities in other cancer types, patient navigation has emerged as a critical strategy to promote equitable cancer care. First described by Dr Harold Freeman in 1990, ¹⁰ patient navigation helped increase the 5-year breast cancer survival rate among low-income patients from 39% to 70%. ¹¹ Patient navigation provides individualized support from the point of abnormal screening through diagnosis, treatment, and survivorship. ¹² Navigation addresses practical obstacles such as transportation, childcare, and financial constraints, and mitigates emotional, linguistic, and informational barriers. Navigators often help patients overcome medical mistrust, facilitate communication with healthcare providers, enhance care coordination across multidisciplinary teams, and connect patients with community resources. ¹³ Findings from the National Cancer Institute’s Patient Navigation Research Program (PNRP), the first multicentered trial to evaluate the benefits of patient navigation, showed improved timeliness to diagnostic resolution and treatment initiation in patients with breast, cervical, colorectal, or prostate screening abnormalities, ¹⁴ especially in resource-limited settings with existing care delays.

Despite success in other cancer types, the role of navigation in HCC remains understudied. HCC, a complex and highly fatal disease often diagnosed at late stages, requires coordination across multiple specialties. Patients with HCC, particularly those from low-income or ethnic minority backgrounds, face distinct challenges, including limited access to specialty care,^5,15 language barriers, stigma, comorbid conditions, and poor health literacy. ¹⁶ Effective navigation programs must be informed by the lived experiences, cultural contexts, and needs of the populations they aim to serve. Cultural adaptations ¹⁷ require direct input from stakeholders. Programs not grounded in patient and community perspectives may miss critical opportunities to reduce disparities and improve outcomes. The current study was designed to identify the navigation needs as reported by a diverse sample of patients with HCC, caregivers, healthcare providers, community advocates, and research coordinators. In contrast to many studies that depend on limited retrospective data, this study incorporates clinical, socioeconomic, cultural, and contextual perspectives to develop a nuanced understanding of the barriers patients with HCC face and the supports they need to engage in successful treatment. Our study findings will inform the implementation of a robust, multi-faceted patient navigation program that facilitates educational, financial, logistical, emotional, psychological, and social support, ultimately aiming to improve HCC survivorship and reduce disparities in HCC outcomes.

METHODS

Participants and procedures

To gain a comprehensive understanding of the navigation needs of patients with HCC, we recruited different stakeholders to provide us with data in an effort to triangulate the phenomenon. ⁷ Patients, caregivers, and providers were recruited from Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine or Jackson Memorial Hospital, a safety-net hospital. These health systems take a collaborative approach to HCC care, but patients are not seen in a specific multidisciplinary clinic, and there are distinct electronic medical records. It is very common for patients to receive care in both systems at various stages of their cancer journey, and the joint multidisciplinary Tumor Board has been the main vehicle for care coordination. Patient advocates were recruited via partnerships with the Global Liver Institute and the Hepatitis B Foundation. Methods of recruitment included direct solicitation through personal contact, individual emails, messages sent to email listservs, and social media posts. Participants were informed that the purpose of the research was to identify the needs of patients with HCC and their caregivers. The research was conducted in accordance with both the Declarations of Helsinki and Istanbul and was approved by the University of Miami Institutional Review Board (20221220) and the Jackson Health Clinical Trials Office.

Participants were asked to participate in a 60–90-minute interview with audio and video recording over Zoom. They were also informed that they could decline to answer any questions and that they could refuse to participate, without any negative consequences. Participants were compensated for their time with gift cards; participants recruited internally received $25, and external participants (patient advocates) received $50. Advocates received a higher stipend due to their valuable expertise navigating HCC in other health systems and upon recommendation of the partners who assisted with recruitment. The interview protocol, developed by the first and second authors, is available in the supplementary materials (Supplemental Materials and Methods, http://links.lww.com/HC9/C36). All interviews were conducted by the first and second authors, who had no prior relationships with any of the participants. The first author is an Associate Professor in Counseling Psychology with expertise in qualitative research methods and experience conducting qualitative research for over 25 years. The second author is an advanced psychology doctoral student under the supervision of the first author, with 4 years of experience conducting qualitative research. Both interviewers identify as female.

Interviews in Spanish were facilitated by a university-contracted interpreter. We excluded any individuals who were unable or unwilling to provide verbal informed consent. The interviews were transcribed using Otter.ai, a subscription-based, AI-powered transcription program. ⁸ English portions of all transcripts were checked and corrected for accuracy by the first author. Interviews that were conducted with Spanish-speaking participants contained components that were transcribed into English and Spanish. From these transcripts, the Spanish portions were translated into English by the same individual who facilitated the interviews in Spanish. This was done as an additional assurance of validity, such that all information from the interview was captured and any nuances that may have been missed during the Spanish interpretation could be captured in the translated transcription and included in the data analysis.

A total of 2 research coordinators and 83 providers [nurse navigators, social workers, advanced practice providers (APPs), and physicians] were invited to participate in the interviews. Additionally, 192 English-speaking and 39 Spanish-speaking patients or caregivers were contacted regarding the study. Due to the utilization of social media, we cannot estimate the number of advocates who were passively recruited to participate in this study. However, 62 individuals clicked on the survey link, and 53 completed the screening survey. After excluding fraudulent or duplicative responses, 11 advocates were invited to participate. Please see Figure 1 for the study flow diagram.

FIGURE 1.

A flow diagram that includes recruitment strategies by stakeholder type, the number of individuals contacted to participate, the number of participants who accepted the invitation, and the number of participants who were interviewed. Stakeholder types are further broken down into smaller categories to demonstrate the varied perspectives engaged. Abbreviations: APP, advanced practice provider; CRC, clinical research coordinator.

In-depth qualitative interviews were conducted with 42 participants, including 14 patients, 7 caregivers, 8 advocates, 2 research coordinators, and 11 healthcare providers, which included 6 physicians, 2 social workers, 2 nurse navigators, and 1 APP. The specialties of the physicians and APPs are as follows: Interventional Radiology, Oncology, Transplant Surgery, Palliative Care, Hepatology, and Radiation Oncology. All healthcare providers had at least 5 years of experience caring for patients with HCC, and some providers had over 30 years of experience with this patient population. Of the total sample, 24 participants identified as female, 17 as male, and 1 as nonbinary. In terms of race, 36 participants identified as White, 3 as Black, 1 as multiracial, and 2 preferred not to answer. Eighteen participants identified as Hispanic, 22 as non-Hispanic, and 2 preferred not to answer. See Table 1 for a breakdown of age, gender, race, ethnicity, social class, and educational attainment by participant type. Interviews were held between July 2023 and April 2024. The study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist, ¹⁸ and the demographics of the patient participants closely approximate the characteristics of the institution’s HCC patient population. ⁴ See Supplemental COREQ Checklist, http://links.lww.com/HC9/C36.

TABLE 1.

Self-reported participant demographics, stratified by respondent type

	Patients (n=14)	Caregivers (n=7)	Providers (n=11)	Advocates (n=8)	Research coordinators (n=2)
Mean age, SD	67 (6.86) Range=57–81	52.17 (15.21) Range=29–67	42.55 (6.93) Range=33–54	62.63 (9.69) Range=49–77	34.5 (4.95) Range=31–38
Gender, n (%)
Male	11 (78.6)	0	4 (36.4)	2 (25)	0
Female	3 (21.4)	7 (100)	7 (63.6)	5 (62.5)	2 (100)
Nonbinary	0	0	0	1 (12.5)	0
Race, n (%)
White	12 (85.7)	5 (71.4)	9 (81.8)	8 (100)	2 (100)
Black	2 (14.3)	1 (14.3)	0	0	0
Multiracial	0	0	1 (9.1)	0	0
Prefer to not answer	0	1 (14.3)	1 (9.1)	0	0
Hispanic ethnicity, n (%)	7 (50)	3 (42.9)	5 (45.5)	1 (12.5)	2 (100)
Social class, n (%)
Low	4 (28.6)	0	0	0	0
Lower middle	1 (7.1)	0	0	1 (12.5)	0
Middle	3 (21.4)	4 (57.1)	4 (36.4)	5 (62.5)	1 (50)
Upper middle	5 (35.7)	2 (28.6)	5 (45.5)	2 (25)	1 (50)
Upper	0	0	2 (18.2)	0	0
Prefer to not answer	1 (7.1)	1 (14.3)	0	0	0
Highest level of education, n (%)
Some middle school	1 (7.1)	0	0	0	0
High school diploma	0	3 (42.9)	0	1 (12.5)	0
Some college	4 (28.6)	0	0	1 (12.5)	0
Undergraduate degree	5 (35.7)	2 (28.6)	1 (9.1)	3 (37.5)	0
Master’s degree	2 (14.3)	0	4 (36.4)	3 (37.5)	2 (100)
DDS—dental	1 (7.1)	0	0	0	0
MD/PhD	1 (7.1)	1 (14.3)	6 (54.5)	0	0
Prefer to not answer	0	1 (14.3)	0	0	0

Abbreviations: DDS, Doctor of Dental Surgery; MD, Doctor of Medicine; PhD, Doctor of Philosophy.

Patient participants had diverse clinical presentations and treatment experiences. At diagnosis, 3 patient participants had very early disease or Barcelona Clinic Liver Cancer (BCLC) stage 0 disease. Four had early disease or BCLC A, 5 had intermediate disease or BCLC B, and 1 had advanced HCC or BCLC C. One patient participant had terminal HCC or BCLC D disease based on Child–Pugh score and performance status, but was listed for transplant. The degree of liver dysfunction at diagnosis varied with the MELD score, ranging from 7 to 23 points. In 2 participants, INR was not available within 3 months of diagnosis. Thus, MELD could not be calculated. All patient participants received treatment with a substantial variety in treatment type and number. See Table 2 for treatment details and sequencing. The time from HCC diagnosis to participation in the interview ranged from 0.64 years to 9.91 years, median 2.71 years (IQR: 1.02–4.92). In the 9 patient participants who had received transplants, between 0.29 and 9.69 years had elapsed since transplant at the time of interview, median 2.11 years (IQR: 0.67–4.56). One patient who received a liver transplant experienced HCC recurrence after transplant.

TABLE 2.

Detailed demographic and clinical characteristics of patient participants

Gender	Self-reported race/ethnicity	BCLC stage at diagnosis	MELD score at diagnosis	Treatment details and sequence	Years since diagnosis at interview	Years since transplant at interview
Male	White	B	14	TACE, Transplant	4.92	4.44
Male	White	0	17	Transplant	5.20	5.20
Female	White	0		TACE, Transplant	3.39	2.11
Male	White	C	9	TACE, Immunotherapy	2.15
Male	Black	B	8	TACE, TACE, Transplant	2.23	0.38
Male	White Hispanic	A	11	MWA, MWA, Resection, XBRT, Transplant, TARE Chemotherapy	4.10	0.67
Male	White	B	10	TARE, TARE	0.84
Male	White	A		MWA	3.20
Female	White Hispanic	A	17	Transplant	9.91	9.69
Male	White Hispanic	B	12	MWA, Transplant	0.64	0.29
Male	White Hispanic	B	15	TACE, Transplant	5.16	4.56
Male	White Hispanic	A	7	Resection	1.02
Male	White Hispanic	D	23	Transplant	1.65	1.36
Female	White Hispanic	0	11	Transplant	0.96

Abbreviations: BCLC, Barcelona Clinic Liver Cancer; MWA, microwave ablation; TACE, transarterial chemoembolization; TARE, transarterial radioembolization; XBRT, external beam radiation.

Data coding and analysis

The first 2 authors independently coded and analyzed all interview transcriptions using an inductive approach aligned with conventional content analysis methods.^19,20 The inductive approach allowed themes to emerge directly from the interview text, from the ground level up, such that the themes were derived closely from the data rather than being driven by theory. ²⁰ The data were coded line-by-line to ensure the inclusion and analysis of all data. ²¹ The authors also utilized the constant comparison method throughout the coding process, in which each participant’s data was compared with all other previously coded data in order to identify and refine themes and gain an accurate understanding of the patterns of convergence and divergence in the data. ²¹

The coding of data was grouped first by type of participant (patients and caregivers, advocates, research coordinators, and providers), to allow possible different themes to emerge across participant type. Comparisons were then made across participant types to allow for overarching themes across participant types to emerge. This allowed researchers to ascertain themes that were common among all participants, common among participant types, as well as unique to individual participants. Data saturation was reached at the theme level after 15 participants across participant types. However, we continued data collection across participant types to capture subtle, nuanced differences in patients’ experiences within each of the themes, which were captured in subthemes. We ceased data collection after 10 additional interviews across participant types did not produce any new substantive information on themes or subthemes. ²² To ensure trustworthiness and as a final confirmatory step of the comprehensiveness of the data analysis, the fourth author audited the coding process by reviewing all transcripts with the themes and subthemes to ensure that no new substantive themes or subthemes emerged. ¹⁹

RESULTS

Results of the interviews identified 5 overarching themes representing the navigation needs of HCC patients: (1) Education/Health Literacy, (2) Financial Resources, (3) Coordination of Care, (4) Emotional/Mental Health Management, and (5) Social Support. Table 3 lists all resulting themes and subthemes and some illustrative quotes by respondent type. It is important to note that each of the themes and subthemes that arose was identified within the interviews of each participant type, with no seeming substantive differences across participant type. One trend that both coders observed, which was also noted by the auditor, was that patients and caregivers tended to provide greater detail about their emotional experiences (confusion, fear, frustration, anger, etc.), whereas providers offered more information in their descriptions of hospital resources and practices.

TABLE 3.

Overarching themes and subthemes regarding the needs of HCC patients from in-depth qualitative interviews of 42 stakeholders

Themes	Subthemes
Education	Disease progression and prognosis
	Treatment options
	Preparation for various stages of disease and treatment
	Education and preparation for upcoming doctor visits
	Importance of follow-up
	Nutrition and other health behaviors
Financial Resources	Insurance (treatment and medication coverage, and copayments)
	Transportation
	Housing/Rent
	Food
	Connection to other agencies or community resources (Medicare/Medicaid, funding programs, foundations, non-profits, advocacy)
Coordination of Care	Scheduling multiple doctor and lab visits
	Follow-up for attendance to appointments
	Medical records are ordered and received by the treatment team
	Imaging done correctly and images received
	Other services to manage symptoms (nutrition, acupuncture, massage, etc.)
Emotional/Mental Health Management	Manage anxiety/depression/overwhelm/confusion/denial/alcohol use disorder/fatigue
	Psycho-Oncology referral
	Psychiatrist referral
	Alcohol and substance abuse treatment programs
	Support groups
	Stress reduction/coping strategies
	Mindfulness/meditation
	Yoga/movement
Limited Social Support	Mental health
	Transportation
	Adherence to treatment

Education targeting health literacy

A major challenge for both patients and caregivers in managing HCC is the lack of clear understanding or education on disease progression, treatment options, and prognosis. Many patients expressed difficulty understanding their diagnosis and available treatments, leaving them feeling unprepared to make informed decisions. As one provider noted, “We get a lot of patients who really don’t know what their diagnosis is. And they need to be educated basically, on what it is and what it involves.” Some providers described efforts to address this gap by using visual aids and simplified explanations. One provider shared, “And when somebody has cancer, I tried to give out this handout where I showed them with pictures, what are different treatments. This is what liver cancer is, this is what a resection is, this is what a liver transplant is.” One patient highlighted how a doctor’s use of diagrams made a significant difference in their understanding: “Even when they were explaining the cancer to me, the doctor drew a diagram, I still have it somewhere of my, of the liver. And he explained about the cancer, how it is and, and, and all the organs involved. And for transplant, it was kind of interesting, but it was really educational and good.”

Caregivers also reported difficulties in understanding medical information related to the disease and treatment process and thus, reported struggling with how to provide support. One caregiver reflected on the difficulty of managing medications and day-to-day care due to limited medical knowledge: “I think education would have been great, because I don’t know any medical terms or anything, and I was completely clueless. So, I just felt like I could have helped him out a little bit more.” Beyond treatment education, caregivers described challenges in understanding disease management and lifestyle modifications, including nutrition. One caregiver described their frustration with conflicting dietary advice, stating, “At the very beginning, I read like turmeric was great for your liver. And then I forget who said like, actually, once you have cirrhosis, it’s too hard on the liver.” Additionally, caregivers noted that they were often not included in discussions about patient education, even though they were involved in decision-making for the patient. As one caregiver offered, “My first suggestion would be to get the caregivers or the family members in first, so they understand and then can help the patient.”

Financial resources

Many patients face substantial financial challenges, including high copays, insurance hurdles, and unexpected expenses such as transportation, hospital stays, and daily living costs. One provider described these difficulties, stating, “I get a lot of these patients, or I get calls, that the insurance is not approving, or they have a very high co-pay, or the authorization needs to be done. So, making sure that these patients receive the medication is also challenging in patients that have cancer.” Similarly, a patient emphasized the difficulty of affording critical diagnostic tests, stating, “But these ultrasounds and PET scans, they cost so much so without insurance. You’re the person who is in trouble, there’s nothing they can do. Nobody’s just gonna say okay, we’ll do it for you.” In addition to medical costs, an advocate noted the accumulation of daily expenses during treatment, stating, “I think some of the challenges that people don’t realize is that staying in the hospital is very expensive, and meals are expensive. And parking is expensive.”

To help alleviate financial burdens, providers discussed the role of social workers in assisting patients with various needs. One provider explained, “If they’re homeless, obviously, you know, hygiene is a huge issue. But we need to help them meet their needs, whether it’s again, a shelter, and it’s kind of getting the social worker involved and wanting them to also be invested in helping the patient.” Another provider echoed this sentiment, emphasizing the role of social workers in addressing a variety of financial and logistical challenges: “I think that… some of our patients need to be referred to social work for, you know, different [needs]. It can be a host of things, whether they need transportation, whether they need assistance with medical bills, or copays, or whether it’s for social–emotional support, or for maybe a referral to palliative care.”

Coordination of care

Effective coordination of care refers to the organization of patient treatment across multiple healthcare providers to ensure timely communications, reduced delays, and streamlining of the medical process. Some patients described positive experiences where their providers worked collaboratively to determine the best course of action. One patient emphasized the benefit of a well-coordinated medical team, stating, “All the doctors seeing me were meeting at some point to talk about my case. So, it was the interventional radiologists and the hematologist and oncologist, all of them on this around the same table talking about my case and discussing the results and the possible treatments and things like that.” Another patient noted the importance of interdisciplinary collaboration, explaining that “the coordination, adaptability, right, between the different functions was put through the good team… it seemed like everyone was really rowing the boat in the same direction.” Such streamlined communication fosters timely decision-making, reducing delays in treatment.

Despite the importance of care coordination, several caregivers and patients highlighted significant challenges, particularly regarding clerical inefficiencies and challenges in navigating the healthcare system. One caregiver expressed frustration over delays in treatment, stating, “I think any hang-ups or issues we’ve had have been with clerical and support staff… I feel like, overall, his treatment has been slowed down probably for close to a month and a half or two months.” Another caregiver described difficulties in accessing care, explaining, “It was so hard to figure out who to call. And it’s very hard to get past the receptionist in the clinic office. We were very, very confused in the beginning until we became a patient and had access.” Additionally, scheduling multiple doctor and lab visits was found to be a logistical challenge, with a caregiver noting, “I think appointment scheduling was a big, big, big, big problem. Big because, especially if you’re not around the corner from where you have to go…to go for an appointment…it could be a whole day event.”

Emotional/mental health management

Many patients and caregivers emphasized the significant emotional toll of an HCC diagnosis and the importance of mental health support in coping with the disease. Providers acknowledged the psychological distress patients experience, with one stating, “Of course, on some of them, whenever they get a diagnosis of liver cancer, they… of course, mentally speaking is devastating for them. So, I would love to learn on how I can help them more when it comes to that.” To address this, providers often refer patients to mental health resources, such as psychotherapy, mindfulness exercises, and psychiatric consultations.

One provider described their approach: “I refer them to our social worker because she’s really good. And she does a lot of psychotherapy and cognitive therapy, relaxation, mindfulness exercises that help patients with anxiety or depression. So, I offered to them, if they want to be referred, some of them will agree some others don’t want to be referred.” Another provider noted that primary care doctors can play a role in providing mental health support, stating, “I also asked them to talk to their primary care doctors for referral, you know, or maybe they can have seen a psychologist and may see the neurologist or even their primary care doctor to prescribe medication in case of an emergency.”

Caregivers also highlighted the role of mental resilience, optimism, and strong social networks in improving outcomes. As one caregiver reflected, “What really helped him was his mental health, his willpower to think positively and to tell himself that everything was going to be okay and to keep that mindset. He says of course his family, friends, and the psychiatrists, all that is very important, and it helped him to recover and come out on top, but he gives a lot of credit to himself for having that mental strength and that optimism to continue.” Another caregiver echoed this sentiment, explaining that their loved one’s positive attitude contributed to better health outcomes: “You know, and so he’s just incredibly optimistic and positive, which makes I think health outcomes much, much better. Right? Like all the research indicates his health outcomes are much better.”

In addition to individual coping strategies, some caregivers and advocates described the long-term emotional impact of caregiving and loss, highlighting the need for therapy and mental health support. One advocate shared, “Yeah, to be able to have therapy is as it is, it is huge. I have some caregivers in the support group whose loved ones passed away during the time when they were there at the support group who majorly have PTSD and its associated PTSD and so they’re having to deal with… traumatic events.” Another advocate described their own experience with therapy: “I had to go through the six months of counseling. And I think it was the best thing that ever happened to me, because it started making me realize why I drink.”

Social support

In the context of healthcare, social support refers to the assistance patients receive from family, friends, or community resources in managing their treatment, daily responsibilities, and emotional well-being. Some patients described having a strong support system, with one stating, “I do have a good support system, my friends that I have, I know a lot of people, but my closest friends were the ones that I told and that, you know, were with me kind of through and through it all.” Others noted that limited support could present additional challenges, as one patient remarked, “For other people that don’t maybe have a good support system, you know, it would be so much more difficult.” Some patients described receiving transportation assistance from family or friends. One patient shared, “My one friend who I stay with now, she was the person who she said, I will be your ride. I will go with you for all your appointments. She had just retired from work and so she was free to go.”

Others identified transportation as a barrier, as a provider noted, “I have a lot of patients…they can’t come to their appointments because… they don’t have anybody to drive them or to pick them up. They have to get anesthesia, they can’t drive.” Some patients also described receiving emotional encouragement from their social network. One respondent stated, “Having somebody encourage you to do the things you can do and keep contact with people, because that’s important to sort of keep you moving forward.” Others described concerns about the impact of social support on treatment access. One caregiver shared, “Knowing that, you know, if you don’t have a really great support system in place, you may not be able to get a transplant is really terrifying to me.”

Finally, social support groups were mentioned as a crucial source of emotional resilience. One advocate described the role of support networks, stating, “And I mean, we’re in our support group, we’ve become a family, we all we know each other, we have people that are waiting, we have some that were donor families, we have liver recipients like myself, but the support is so important, and it’s keeping that person’s head on right and thinking positively.”

DISCUSSION

According to the National Cancer Institute’s Patient Navigation Research Program (PNRP), effective navigation programs include 4 core elements: identifying patients in need of support, assessing barriers to care, developing individualized care plans, and tracking patients to ensure resolution of care. ¹³ In this qualitative study, multiple stakeholders were assessed to identify 5 primary navigation needs of HCC patients. Effective patient education is crucial in ensuring that individuals diagnosed with HCC fully understand their condition and treatment options. Research has shown that limited health literacy is a significant barrier to cancer care, often leading to confusion about treatment options and prognosis. ²³ Additionally, limited health literacy has been associated with worse outcomes following surgery for hepatobiliary cancers ²⁴ and HCC patients in general. ²⁵ Providing visual aids and simplified explanations may enhance comprehension.

Caregivers play a critical role in supporting patients throughout their journey, but often lack the necessary guidance to assist effectively. Structured education for caregivers on disease management, medication administration, and lifestyle behaviors, including nutrition, may improve patient outcomes and reduce stress for both patients and their support systems. Caregiver psychological well-being is influenced by their health literacy and social connectedness, highlighting the need for structured education and social support networks to reduce caregiver burden. ²⁶ Furthermore, we found that many caregivers expressed feeling excluded from essential health education despite being central to decision-making. A study focused on caregivers of patients with terminal HCC identified similar findings; caregivers felt unprepared to manage the care of their loved ones and struggled with understanding whether symptoms were due to HCC or underlying liver disease. ²⁷ Including caregivers in health literacy interventions and discussions about diagnosis, prognosis and treatment may enhance informed decision-making and improve overall patient care.

Coordination of care remains a significant factor in improving patient experiences and outcomes. ²⁸ Patients in this study who had access to a well-integrated medical team emphasized the benefits of interdisciplinary collaboration, where oncologists, radiologists, and other cancer specialists worked together to discuss cases and determine the best course of action. Effective care coordination, particularly at the organizational level, involves interprofessional collaboration and integrated services that facilitate smoother transitions and better patient outcomes.^29,30 As in other studies exploring perceptions about care delivery, ³¹ participants noted challenges such as clerical inefficiencies, difficulty in scheduling, and miscommunications between offices as common barriers to timely treatment. Universal and longitudinal navigation could ensure that patients have a point person to whom they can communicate their needs and concerns. This, along with the implementation of a streamlined messaging management system, could help ensure that important information is accurately relayed between departments, reducing administrative delays that can slow down patient care.

Research indicates that cancer patients face a significantly higher risk of depression, with odds more than 5 times greater than those in the general population. ³² Specific to patients with HCC, 20% have anxiety, while 25%–50% experience depressive symptoms.^33,34 This psychological distress can persist well beyond treatment, affecting both quality of life and oncologic outcomes. ³⁵ Providing access to support groups, therapy, and movement-based interventions such as yoga or mindfulness exercises may help alleviate emotional distress and promote overall well-being. However, despite the availability of mental health services for HCC patients, many patients and caregivers are unaware of these services. Many providers described referring patients to psycho-oncologists or therapists on a need-based basis, but not all patients mentioned these resources in interviews, suggesting that they may not have been informed about them or were too overwhelmed with other information given at the same time to recall these resources. Given that emotional distress is not always outwardly visible, a more structured approach to communicating available mental health resources could help bridge this gap. Incorporating a mental health checklist into navigation programs could allow for routine screening and referral to emotional support resources when needed, ensuring that all patients have access to the support they need throughout treatment.

This study advances knowledge regarding the needs of patients and caregivers with HCC and represents a critical initial step toward designing an intervention that incorporates navigation and targets the needs identified by all stakeholders. There is a paucity of existing data specific to this unique population, which has hindered progress toward addressing the multiple determinants contributing to disparities in HCC outcomes. High cumulative social disadvantage is associated with race and language barriers and is associated with poor outcomes in patients with HCC. ²⁵ This study’s strengths lie in the diverse sample of participants included, especially the intentional inclusion of varied stakeholder types. The sample was ethnically diverse, particularly including a larger-than-usual percentage of Hispanics, corresponding to the demographics of the HCC patients seen in our healthcare systems. One limitation is the lack of representation of Asian perspectives in our study. Asian patients represent 3% of patients with HCC within our systems; out of 9 Asian patients whom we attempted to contact, 7 did not respond after multiple attempts, 1 declined, and 1 initially agreed to interview but did not follow up after multiple attempts to schedule. Therefore, it is possible that the viewpoints of Asian patients and caregivers with HCC may differ from those reported by other groups, and future studies should seek to include these views. Engaging patients from our private and safety-net institutions ensured socioeconomic diversity. By including advocates from throughout the United States, we identified challenges that are generalizable to patients seen at other institutions. The interviews were conducted by individuals who are not part of the clinical team, which permitted free expression and minimized social desirability bias.

For patients with limited social support, wraparound services may be essential in addressing their holistic needs. Many patients face barriers related to transportation, housing, and food insecurity, which can significantly impact their ability to access and adhere to treatment. Connecting patients to social workers early could facilitate enrollment in assistance programs and preemptively address challenges before they disrupt care. Additionally, expanding access to grant funding or emergency financial assistance dedicated to covering basic needs may help alleviate these burdens. Referrals to community-based support groups or survivorship networks can offer patients meaningful emotional and practical assistance from others who have shared similar experiences, reducing feelings of isolation, enhancing information exchange, and improving coping. Collectively, these strategies can create a more holistic, patient-centered approach to navigating HCC care, ultimately leading to better health outcomes and improved quality of life for both patients and their caregivers. Further studies examining a standardized approach to implementing longitudinal navigation in vulnerable HCC patients are critically needed, as they could transform current clinical practice and improve disparate outcomes.

Supplementary Material

hc9-9-e0739-s001.docx ^{(40.7KB, docx)}