Background: Ocular melanoma (OM) is a rare and aggressive cancer. This unique oncology cohort has complex needs that are underrepresented in the literature, leading to significant gaps in care.
Objectives: To address knowledge gaps and provide recommendations to the oncology provider community about how to improve care for OM patients.
Population and Setting: Nine participants (N=9) met the inclusion criteria for this study and participated in virtual interviews. A virtual focus group (N=7) including these participants was conducted at the end of the study to ensure rigor through triangulation of data.
Methods: Interpretive description methodological framework informed a qualitative study led by 2 experienced oncology nurses, a research assistant, and a confidential patient advisor.
Study Design: The study was designed in 2 phases to facilitate triangulation of data to improve rigor. The first phase of the study included semistructured one-on-one virtual digitally recorded interviews. The second phase was a dynamic virtual focus group in which interviewed participants interacted with the research team around themes that had developed from the data. Consolidated Criteria for Reporting Qualitative Research criteria guided qualitative data analysis.
Conclusions: Specific recommendations for healthcare providers included making improvements to the clinical communication environment centering on the beliefs and fears of patients; working as a team to group care and reduce delays to diagnoses and treatments; taking the time to understand the complex multicancer component of OM patients experiencing additional cancers; and bolstering patient education strategies and forums.
Ocular melanomas (OM) include choroidal melanoma, iris melanoma, and uveal melanoma, and they are extremely rare. According to the American Cancer Society, the chance of developing an OM as a primary cancer is roughly 5 in 1 million.1 Unfortunately, rates of OM diagnoses have been steadily increasing over the past decade.2,3 In most cases, OM has no symptoms or warnings signs in the earliest stages, and diagnosis is usually from late-stage complaints during routine eye exams. Some factors influencing the development of OM include being older, being Caucasian, lifetime sunlight exposure, and light-colored eyes.4 Treatment of OM depends on a variety of factors, including traditional oncology protocols such as surgery (enucleation), radiation, and chemotherapy. Survival rates for OM depend entirely on stage, with the poorest 5-year survival rate seen in those who develop metastasized cancer.5 Unfortunately for OM patients, rates of secondary cancers, including second primary neoplasms or metastases, are high.6
Limited research exists on the survivorship experience of patients who have experienced OM. Many studies focus on specific types of OM, most notably uveal melanoma (UM).7 In addition, several studies have explored the complications arising from survivorship, including hopelessness and depression.7-12 Quantitative studies include those undertaken through data sets provided by large OM organizations such as the Ocular Melanoma Foundation (OMF). For example, Afshar et al performed a cross-sectional online survey of 184 OMF members. Participants answered questions about diagnosis and treatment modalities and psychosocial concerns, leading the researchers to conclude that there was a significant need for additional healthcare provider education on the needs of OM patients.5 Other recent studies reached similar conclusions about a need for specific oncology provider education on how to improve care for OM patients. A longitudinal quantitative survey by Frenkel et al explored the clinical journey of UM patients and revealed a need for increased experiential knowledge.13 Barker et al performed a similar cross-sectional study using quality-of-life (QOL) metrics to identify concerns in this cancer cohort and concluded that mental health supports were critical for this cohort.14 The metrics used were the European Organization for Research and Treatment of Cancer core QOL questionnaire QLQ-C30, as well as the Ophthalmic Oncology module QLQ-OPT30.14 Other metrics that can be helpful in the OM experience include the NCCN Distress Thermometer and the Functional Assessment of Cancer Therapy – General. A significant knowledge gap remains in the research literature about the lived experience of OM patients. Alfano et al discussed 4 personalized pathways for cancer care, and the fourth pathway was about identifying and filling research gaps.15 This paper aims to describe a qualitative study designed specifically to address these gaps and to provide recommendations to the oncology provider community about how to improve care for these patients.
A qualitative research design scaffolded by interpretive description sought to generate deep, rich data about the lived experience of participants.16-18 Interpretive description constitutes an inductive methodology that employs diverse qualitative tools in a logical matter to inform patient experience research through a disciplinal lens.18,19 Theoretical groundings for this study were guided by the models of cancer survivorship care.20,21
The study was designed in 2 phases to facilitate triangulation of data to improve rigor. The first phase of the study included semistructured one-on-one virtual digitally recorded interviews (Table 1). The second phase was a dynamic virtual focus group in which interviewed participants interacted with the research team about themes that had developed from the data. Only 5 of the participants received oncology navigation related to their diagnosis that was general oncology focused, and in each case the navigator was a social worker (n=3) or a registered nurse (n=2). Only 1 patient in this study received oncology navigation from an OM-specialized nurse, and this was attributed to living in a large city on the East Coast with access to a multitude of oncology resources.
Inclusion criteria for participants were English-speaking, adult (over the age of 18), a resident of Canada or the United States, in remission for primary OM, and having experienced a second non-OM cancer. Patients who had a recurrence of the primary OM or who had metastatic OM were not eligible for this study. Recruitment was done through targeted convenience sampling through social media and OM support groups with the support of a confidential patient advisor, known only to the principal investigator (PI). Over the 3-month recruitment period in 2023, 21 potential participants contacted the PI. Nine met the inclusion criteria and participated in interviews, and the virtual focus group contained 7 of these participants. See Table 2 for the demographic qualities of participants. Qualitative data analysis included thematic analysis techniques complemented by qualitative content analysis.22 This analysis utilized NVivo 14 software as well as Word and Excel charts of codes and themes.23-25 Qualitative research standards as outlined by the Consolidated Criteria for Reporting Qualitative Research were strictly adhered to.
A large amount of rich textual data resulted from data collection. The experience described by the participants included 4 themes: the entangled self, the isolated self, perils of survivorship, and self-advocacy. The second level of thematic analysis focused specifically on the complex cancer journey and on suggestions for healthcare providers.
When someone has OM, they enter the cancer care system at a point where they might only see a few healthcare professionals. This could include nurses, social workers, and an ocular oncologist. If there are concerns about systemic disease, these patients will also be referred to a medical or surgical oncologist. Overall, however, the team is rather small and personal. The addition of a different primary cancer complicates the healthcare journey to a new, more complex level. Patients will be interacting with a whole new team that could include oncologists, oncology nurses, social workers, therapists, surgeons, and a host of providers with perhaps a nurse navigator. This means the person is now fractured into several teams: the primary care provider (PCP), if they have one; an ocular oncology team; and a secondary cancer team. The cancer care experience is then described by the participants across the board as complex and splintered.
Many described their initial diagnosis of a non-OM cancer as traumatizing. Instead of being special with OM and dealing with very specialized practitioners, they were now part of a larger body named cancer.
Many of the participants described their initial diagnosis of a non-OM cancer as being traumatizing. Instead of being special with OM and dealing with very specialized practitioners, they were now part of a larger body named cancer. An older woman described that when she went to the emergency department with new symptoms, “the beds were all full. So, I was put in a huge room with, I don’t know, there must have been 40 people, like it was like, almost like a gym. And they were, it was awful…that’s inhumane to a person who’s just been diagnosed with a cancer.” Similarly, another female participant diagnosed with lymphoma noted that, “I was in a, you know, in a huge room with all these people in COVID and oh, God, it was just awful.” The descriptions by many participants of this extreme difference between getting an OM diagnosis and getting another cancer diagnosis revealed that there exist different worlds of cancer care that directly impact the patient experience.
The participants in this study voiced a wide variety of concerns over working with so many different care providers all housed under the cancer team umbrella. The barriers and recommendations for care expressed by the participants are useful for oncology nurses and other healthcare professionals in that the data inform on what the challenges are and what can be done about them. Many of these subthemes are also found in general cancer QOL metric research, although the qualitative nature of this study allowed for deeper understanding of specific QOL elements.26 There are 4 subthemes in this section, including improving relationships with care providers, mechanisms of care, being known, and a need for expanded patient education.
The overwhelming assessment from the participants was about the lack of continuity of care for those with OM and a second primary cancer. Care was “disjointed,” “confusing,” “chaotic,” and described by one participant as “the right hand didn’t know what the left hand was doing.” By no means was the fracturing of care purposeful, and many participants noted that their healthcare providers were “doing the best they could.” Having a general provider, an ocular oncologist, and a medical oncologist (at a minimum) created a complex care journey in which the participant (as patient) became the center of their own universe and the master of their own medicine. Some participants welcomed this situation as empowering, but most expressed fear that they were personally responsible for their complex care and if they messed anything up, it could be fatal. A young man who had been a student when he was diagnosed with OM and then shortly thereafter with a non-OM liver nodule noted, “I can say I’m really sick of going to the hospital since I go 2 to 3 times a week. So it’s really hectic, and I see 3 doctors every week.” He described his experience as “a new job of sorts” being “exhausting, mentally and physically.”
Several participants found that their medical oncologists struggled to tell them test results showing another cancer. One noted that when his provider was describing the secondary cancer as “aggressive,” he took notice that the provider’s voice “cracked.” The patient then reflected that he felt “like, oh, shit. So he didn’t want to be on the phone, he didn’t want to look at me. He didn’t want me to see his face. And his surgical notes didn’t go up until 2 days later.” Another patient was in an ultrasound suite when “I immediately knew that I was in trouble because she said to me, ‘I am going to go and write my report. I’ll be back in a minute.’ And I thought, really, you’re not going to write the report. She came back with another technician, and the other technician said to me, ‘The machine’s not working very well, we’re gonna take a few more pictures.’ They must have thought I was an idiot, right?” Another participant noted “sometimes it’s really frustrating…they each have their specialty that they want to take care of….I don’t think there’s a lot of coordination between them, even if they’re, they’re all at [the same] Cancer Institute. So, I’m sure they talk, but you know, they’re really busy. I don’t think they coordinate care while I do 3 different things.”
One more participant spoke to this, stating, “I find it frustrating that…the breast cancer oncologist, he’s got tunnel vision. He has his protocols, he has his little like, this is what we do. And he doesn’t seem to want to look outside of that or have any interest.”
One participant stated, “I thought it would be care coordination, and I was so relieved, but it didn’t turn out to be that. [It turns out that] there isn’t somebody who’s going to take care of it all.” The complexity of care for multiple cancer diagnoses can’t be helped because of the way the current medical model of care runs. However, participant reflections remind the healthcare team that better coordination of care could make a significant impact. The use of a central, general, and permanent oncology nurse navigator, for example, to synchronize care between all cancer providers and the PCP might be an important solution to the current fractured paradigm. An older woman said, “Right when you get diagnosed and you’re being treated, you get a shock. And then as soon as the treatment is done, and you are on what do we call, in remission or in a stable time, that support withdraws. But that’s actually the time that you would need more support.” Another participant said that if even one of the providers was communicative and quick with responses, it made a significant difference in the perception of care. As one middle-aged woman said, “you’re not treating the cancers, you’re treating the person.”
The solution of a centralized care navigator came up in the participant interviews time and time again. Another barrier to care expressed in this study was the dual issue of treatment delays and disjointed procedures requiring extra time and travel on the part of the patient. Healthcare providers who were lauded were the ones who carefully grouped care and took travel time and multiple provider visits into account. For example, one woman who lived several hours away from an urban center said, “They’re very good about making our appointments times so that our travel time is taken into account and we’re not having to leave here at 4 in the morning.” Even when a general care provider is involved, there is a feeling that they were too busy to really manage the complexities of multiple cancer diagnoses: “Too many times my primary care drops the ball on stuff.” Another said, “I had an abscess that perforated my colon. My primary care blew it off too long.” Many participants noted a delay of several days to several weeks in diagnostic and surveillance scans, which led to anxiety, stress, and some significant medical complications.
In all cases, significant financial apprehension overshadowed the daily lives of the participants. Many concerns about health insurance challenges, loss-of-life insurance policies, and dancing with providers around charges and fees filled the interviews. Mindful care management was critical to avoid excess charges, duplicated diagnostic testing, and repeated transportation and lodging costs for having to travel to cancer centers far from home. Transportation concerns were compounded due to the OM diagnosis, which in many cases meant that people could not drive themselves anymore, and so grouping of care remains critical since the participants had to find ways to get to doctor offices, whether this was friends, family, taxis, or nonprofit organization drivers.
A pronounced aspect of this study concerned patients having the impression that some care providers did not take them seriously. This sentiment was embodied with the statement from a middle-aged woman with UM who developed a second primary breast cancer expressing tremendous frustration with the complexity of her care, saying, “I still see 2 separate oncologists, and possibly one of my biggest frustrations is the breast cancer oncologist does not seem to understand or care about the other diagnosis.” The result of this for patients was a perceived delay in detection and intervention. Asked to expand on this sentiment, participants provided several responses. One older patient noted that cancer has been “normalized” for many providers, and the result is that “empathy gets lost.” She continued, “I can pick up the people who have been empathetic and kind. And I can pick up the people who just sort of, you know, brushed you off.” What participants in this study seemed to be asking for was connection with the healthcare provider team and a sense of being known. Even if there was confusion over test scheduling, or a lack of familiarity about the different cancer subtypes, a sense of being known by a provider was critical for feeling cared for and being taken care of.
On top of this, the high mortality rate of OM patients leads to a heightened sense of dread. Many of the participants noted that, in general, the healthcare team just “didn’t get it” about the frequent loss of OM colleagues, adding to the sense of not being understood about the OM diagnosis. A young participant noted that she participated in many online OM and breast cancer support groups but had to stop. “I felt like for my mental health, I needed to pull away from this group. I was thinking about it too much. And, you know, I was, I was doing well, so. And not everybody does well.” Another said, “I don’t even want to be part of an OM support group because I can’t, I can’t bear to hear more sad stories.” One participant said, “They’ll die on me, I know they will. And then, then I’ll be standing all alone.” Even when participants were considered in remission (“you never get to ring a bell and be cured”), the OM diagnosis seemed to be the primary one of concern and made them sensitive to what was said by the healthcare team. For example, one older participant noted that her medical oncologist told her:
‘I want you to eat what you want. I want you to do what you want. And I want you to get as much sleep as you can and take a sleeping pill,’ which…she’s been telling me not to take. No, now take one every night! Basically, I felt as if she was telling me I was going to die. And she doesn’t know that and neither do I, but that’s how I’m feeling, I guess. I’m feeling that this is the end of the road.
Within this communication environment, verbal and nonverbal interactions became suspicious. When the practitioner didn’t understand the whole person (or was perceived not to grasp the bigger picture of multiple cancer diagnoses), the interview data reveal a heightened level of distrust and skepticism, and it was harder for patients to adhere to recommendations. One patient stated that she was extremely concerned about her medical oncologist: “She did not feel like the cancers in my family history warranted genetic testing.” The participant then went and did the genetic counseling on her own and brought this information back to the oncologist. A heated discussion ensued, and the provider refused to look at the results. The participant suggested that the solution in a case like this is about practitioners knowing their patients and accepting that some patients will do their own research. She said, “You need…medical professionals probably willing to go the distance. You know, to continue to do surveillance, to continue to support those patients, and to continue to answer their questions.” If practitioners can be aware of this phenomenon in their patient interactions, significant clear conversations and improvements to care might follow.
You work as an oncology navigator for a large urban clinic, and you were assigned Sarah’s case. Sarah is a 45-year-old Caucasian woman with blue eyes. She is very active after having had stage I posterior uveal melanoma (UM) 3 years previous. At the time and as a precaution, Sarah spoke at length with her ocular oncologist and opted for enucleation. She was then fitted with a prosthetic eye. She continues to go for oncology surveillance studies every 6 months, and she is very cautious about physical symptoms of any kind.
About 2 years after the original UM diagnosis, Sarah calls you with a concern. She tells you that she has noted a dimple on her left breast but “didn’t feel anything there.” You put Sarah on hold and speak with an oncologist who recommend she go to her primary care provider (PCP). She thanks you for the suggestion. The PCP opted for a STAT mammogram and ultrasound, and ultimately a core needle biopsy revealed a grade 2 ductal carcinoma in situ. Further pathological examination revealed that this breast cancer was an entirely new diagnosis and did not constitute a UM metastasis. Sarah is referred to medical and surgical oncologists and begins a cancer journey with an entirely new oncology provider team. After deciding on a double mastectomy followed by adjuvant radiation, Sarah is now terrified at the ability of her body to “get” cancer. She now also has multiple healthcare teams, including the PCP, the ocular oncologist, and a medical oncologist, and she is concerned that these teams do not seem to speak to each other. Sarah reports that her care feels fragmented, and that she lacks a provider who sees her as a “whole” person.
As the nurse navigator for Sarah, you contemplate how to address her concerns. A first step is to explore quality-of-life (QOL) concerns using general cancer metrics such as the NCCN Distress Thermometer and the Functional Assessment of Cancer Therapy – General. Distress and QOL are important factors in providing individualized care. With these data, a follow-up intervention is to discuss these concerns with the provider teams to coordinate care between the providers in a way that is holistic and prioritizes communication. You decide to do this and to offer to be the central point of care coordination and communication between the providers and Sarah. During this discussion with the providers, you realize that this is a persistent issue with complex cancer care coordination. You approach your manager over coordinating a quality improvement project using a PDSA (plan-do-studyact) cycle for improving the process of healthcare provider coordination and communication.
A consistent message in this study was that education for patients with OM needed to be significantly improved. These patients routinely reported that most of their education about cancer came from “Dr Google” or from social media. A participant said, “I think that’s why the Facebook groups are good because you can ask questions and get the other people’s experiences.” For second primary cancers that were more common, like breast cancer or lung cancer, the availability of resources was copious. However, there was little information about compounded cancer diagnoses and “how one cancer and how treatments can affect each other, or not, or maybe they will in the future.” All participants commented that the materials handed to them by providers were generic, if they got any at all. A young man noted, “I was not given any materials that I recall. They gave me a lot of generic pamphlets and said counseling was available if you need it, but I don’t recall being given any information on any groups that met or support groups or anything like that.”
One middle-aged participant noted, “it could be as simple as having fliers in the waiting room or, you know, they all have TVs.” Specific slideshows that were looped or that were available to patients could also help.
Suggestions to utilize waiting rooms as education encounters were common. A young man said that he spent “a lot of time in the waiting room” and may not always have to see his medical oncologist so much, but the ocular oncologist “I will see for the next 30 or 40 years.” For this reason, the waiting room is “the number one” place for education materials. One middle-aged participant noted, “it could be as simple as having fliers in the waiting room or, you know, they all have TVs.” Specific slideshows that were looped or that were available to patients could also help: “little slideshows [could tell] you what’s new in treatments.” Collaboration of healthcare providers with support groups, especially those online support groups through Facebook or WhatsApp, for example, could also increase the distribution of accurate information. Several participants suggested that their main source of networking, clinical trial news, and/or cancer treatment materials came from these social media outlets.
One of the best ways for healthcare providers to improve the care journey and survivorship experience is to listen to the voices of the patients themselves. This study has confirmed that the experience of OM is all-encompassing and impactful for all stages of survivorship. Knowledge gained from this qualitative study informs the treatment of this unique group of patients. Oncology nurses and nurse navigators have the skills, and the willingness, to listen to these patients and to advocate for essential modifications that can have long-lasting care implications.
The authors wish to acknowledge the generous funding support from the Fay W. Whitney School of Nursing Humenick grant (2023). We also wish to thank the patient advisor, LD, for her assistance in this study, and we appreciate the participants who shared their stories.
This work received funding from the University of Wyoming Fay W. Whitney School of Nursing Humenick Grant (2023).
The authors have no conflicts of interest to declare.
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