The Patient Experience of Ocular Melanoma: An Interpretive Description

Abstract

The purpose of this study was to explore the patient experience of individuals diagnosed with ocular melanoma (OM). This qualitative study was guided by Interpretive Description. Nine participants (N = 9) participated in interviews. A focus group (n = 7) was conducted at the end of the study to discuss and confirm themes. WORD, EXCEL, and NVIVO were used for data collection and analysis and EQUATOR guidelines (COREQ) were followed. This study revealed three themes: the entangled self, perils of survivorship, and self-advocacy. The participants in this study described how they discovered their OM, the treatments they faced, and the deep sense of loss from the disruption of sight. The participants also highlighted the importance of understanding OM as an ongoing, lifelong cancer experience that is rarely acknowledged by healthcare providers. Understanding the journey of OM patients as cancer survivors is critical for both oncology and general healthcare providers. With improved recognition, better patient-centered care could be provided affecting both physiological and psychological health of OM patients.

Introduction

Ocular melanoma (OM) is one of the rarest cancer diagnoses and includes choroidal melanoma, iris melanoma, and uveal melanoma. Risk of developing OM as a primary cancer is roughly five in one million, with increases over the past decade.^1,2 Treatments include surgery, radiation, and chemotherapy. OM is rarely considered cured, but rather is spoken about in terms of remission. This qualitative study sought to better understand the experience by asking, how do OM patients describe their disease experience?

The small extant body of OM patient experience studies focuses on the complicated aspects of survivorship. Afshar et al performed a cross-sectional online survey using the Ocular Melanoma Foundation database suggesting more research and education of healthcare providers as to the needs of OM patients. ³ Several quantitative longitudinal studies revealed persistent anxiety and depression in UM patients.^4–7 Additionally, a study assessing pre-established quality of life factors for uveal melanoma patients suggested that further descriptive studies were needed. ⁸

Method

This study was led by a 25-year certified oncology nurse and was a two-phase qualitative research design guided by Interpretive Description methodological framework.^9–13 This study of lived experiences was driven by phenomenological principles as espoused by Husserl around human experience as the foundation of knowledge.^14,15 Nine participants (N = 9) were recruited in a 3-month study period using snowball and purposive sampling within social media support groups (See Table 1). The first phase of this study included semi-structured one-on-one digitally recorded virtual interviews over ZOOM that lasted about 60-min. The second validation phase of this study was a virtual 60-min ZOOM Focus Group in which phase one participants interacted around themes arising from data analysis. The Criteria for Reporting Qualitative Research (COREQ) was applied to standardize reporting. ¹⁶ Qualitative content analysis was guided by an inductive research process as outlined by Elo and Kynagas and performed using NVIVO, EXCEL, and WORD software. ¹⁷

Table 1.

Demographic Qualities of the Participants.

	OM patient with second primary cancer cohort (N = 9)
Current Age Range
Below 30 years	3
30-50 years	1
50–70 years	5
Gender
Male	3
Female	6
OM Diagnosis (self-reported)
Ocular Melanoma (general)	7
Uveal Melanoma	2
Choroidal Melanoma	0
Iris Melanoma	0
Major Day-To-Day Activity	At the Time of Diagnosis At the Time of the Interview
Retired/Unemployed	4
Employed full-time	4
Attending university	1
Relationship Status
Married or co-habitating with a partner	6
Living alone	3

Results

Three key themes emerged from the rich descriptive data narrative: entangled self, perils of survivorship, and self-advocacy (See Figure 1).

Figure 1.

Ocular Melanoma Patient Experience: Themes Arising.

Theme 1: Entangled Self

The concept of entanglement evokes visions of being caught in difficult circumstances and unable to escape. Within the data gathered from this study, universal concerns appeared over being trapped in an arduous circumstance by an OM diagnosis, including thoughts of mortality. These generally focused on being pulled from the mundanity of life into something else, something where mortality and death took center stage instead of existing on the unconscious sidelines. One patient noted that they were constantly thinking about their family and what they would leave behind, advising “don't cancel any life insurance policies you have, because you will never get another one.”

An important aspect of the existential nature of cancer is the crossing-over moment from healthy to unhealthy, from non-cancer to cancer. One older woman noted, “When you see people that are dying, especially after a very short journey with mets, it can be very devastating.” Perhaps the mortality of cancer is best summed-up by an older woman who said, “I'm nervous as hell every single day.” Many participants showed encouragement in finding purpose within their circumstances, with one participant stating, “I just try to get through one day at a time. I do rail at the world, right? Sometimes, I guess I want to get through it with some grace.”

Theme 2: Perils of Survivorship

Within this patient cohort there was a persistent feeling of confusion over survivorship. One of the perils of being a survivor was a requirement to “remain positive”. This created an obligation for many to consistently serve as a role model for others with OM. An older woman noted that, “I have had to find the silver lining in every single thing that's happening so that I can be strong, so that I can tell my story to others so that others can find strength.”

Another participant noted that she felt God allowed her to get cancer because of “knowing who I am and how I would handle it… so that I could save other family members who have a purpose that I don't know about.” Concerns and anxiety over work, finances, and insurance were far eclipsed by general cancer anxiety. One woman noted that, “I just put that fear in a little metaphorical bag and set it aside and revisit it, you know, when I need to.” For these patients, the lived experience of the “hammer falling” at any unexpected moment was ever-present. A participant said that “the first year you're in a state of shock and everybody tells you you're gonna be fine” and you discover that “these were all lies. But then, when you get further along, you get into this, scary it is, this anxiety that we all, all the cancer patients have. This is no joke.” For all the participants, worry and fear amplified for each follow-up screening exam, with one saying, “I’ve got anxiety all over the place.”

Theme 3: Self-Advocacy

A general lack of knowledge by the healthcare team around OM accentuated anxiety and a need for self-advocacy. One participant noted after a biopsy of a new tumor that, “there's a good chance that… there would have been more delays in terms of various tests and [this would have resulted in] a later diagnosis and, like, if I hadn’t pushed, they were going to do the biopsy a month later and I just, I said, unacceptable!” Another said that their entire existence was based on being persistent and constantly “hounding” the oncologist to do more tests. An older woman disclosed that she was “persistently persistent” with her oncology clinic, with another participant stating that her own research exclusively saved her life.

The belief of being solely responsible for survival represents a significant psychological weight. A participant said, “Please advocate for yourself, check yourself. No one else is going to save you. You have to save yourself.” This sentiment can be common in cancer patient lived experience research, but according to the participants in this study, diagnosis with a rare cancer meant it was extremely vital for each to stay on top of their own cancer journey. One older patient emphasized that after her experience she tells everyone to advocate: “I now am encouraging everyone I know to do their self-checks. And advocate for themselves. Like I know a number of young women, I say young (they're in their mid-30's), who found and have found a lump and their doctors have said oh, it's, It's probably nothing. And I've told them flat out, do not accept that.”

Discussion and Implications for Practice

Patient experience research is important because it informs healthcare quality and thereby instructs providers on how to tailor elements to achieve patient-centered care. ¹⁸ The OM patient might feel concerned that providers lack familiarity with what the patient is going through, and do not have the expertise or experience to help them. This reflects increased psychological burden that can occur with a cancer diagnosis. Wang, Lin, and Liu (2024) ¹⁹ as well as Jansen et al (2024) ²⁰ confirm that interventions around the psychological impacts of cancer are often delayed. This study has confirmed that psychological burden associated with a cancer diagnosis can be substantial, and this may be emphasized in patients with rare cancers such as OM. Early interventions around the psychological impact of OM include interdisciplinary assessments for physical, psychological, personal, and social factors.

Another important aspect of OM is the constant reminder of a sensual change. This could be alterations in physical appearance or changes to vision because of treatments including enucleation, prosthetic eye, eye deformity or abnormality. Any subsequent disease diagnosis is informed by the OM experience. For this reason, OM patients benefit from a medical team who has a basic understanding of what OM is and how patients might experience treatment and remission. The importance of a subjective, experience-based lens to inform a healthcare provider interaction is also supported by the Ocular Melanoma Foundation. ³ Recommendations for providers arising from patient discussions in this study include improving patient-provider relationships, improving the care environment, providing the patient a sense of being known, and expanding education to providers about ocular melanomas.

Limitations

This study had limitations that should be considered. First, the small sample size is indicative of the incredible rarity of OM survivors and the high rate of OM-related mortality. The researchers worked closely with several OM social media support groups as well as organizations to try to increase recruitment. The study design also incorporated an OM patient advisor to bolster participation. Second, as researchers and participants live in various locations, ZOOM interviews were used, which can be considered both an asset and shortcoming. Digital interviews are valuable in the sense that they have allowed researchers access to participants who might not otherwise be recruited for a study.

Conclusion

This qualitative study aimed to generate knowledge around the care experience of OM patients. Within this study, themes of the entangled self, the perils of survivorship, and self-advocacy arose as areas of concern that inform survivorship and subsequent oncology care.