My name is Jeannette van Weerden, and I work as a nurse practitioner in the ophthalmology department at UMC Utrecht. Among other things, I focus on the care and treatment of patients undergoing eye removal surgery. During my training, I noticed that patients are often anxious. To help alleviate this anxiety, I focused my thesis research on finding a suitable intervention. I had the opportunity to present the results of my research at the OOG in OOG peer support day alongside two members of our multidisciplinary team: Ms. Frédérique Bak, an ocularist, and Mr. Blokland, a humanistic counselor. In this summary, I’d like to give you a brief overview of that presentation.
Background Research
Approximately 500 eye removal surgeries are performed in the Netherlands each year. A painful, blind eye, trauma, or infection following surgery are the most common indications. Depending on the indication, the choice is made between evisceration (preservation of the sclera [the tough outer layer of the eye]) or enucleation (removal of the entire eyeball). Evisceration is the most commonly used surgical method because it provides better stability and mobility for the subsequent ocular prosthesis.
Results of the Literature Review
A literature review showed that eye removal can have a major impact on patients’ lives. It was reported that they may experience “public staring” (the feeling that people are looking at the ocular prosthesis), “social avoidance” (being less willing to engage in social activities), or “difficulty with relationships” (struggling to form new connections due to shame). As a result, there are more broken relationships among patients who have had an eye removed; for some people, this has consequences for their employment (such as having to change jobs or rely on disability benefits); and some people avoid forming (new) social connections. Eye removal can therefore have a major impact, which in turn can lead to increased anxiety.
Results of the field study
In the practical study, patients were found to be primarily anxious about “what lies ahead,” such as: “How will the surgery go and what will the recovery process be like?”, “How is an ocular prosthesis fitted?”, and “How should I care for it?” But they also had concerns about their changing appearance, such as: “What will the cosmetic result be with an ocular prosthesis?”, “Will this be visible to others?”, and “Will I be able to live with this?”
For your consideration
It was striking that the literature indicates that facial deformities have more negative consequences on mental well-being and quality of life than deformities of other body parts. Meanwhile, interviews reveal that ophthalmology departments appear to provide less attention, information, and support regarding concerns about appearance following eye removal than the department interviewed, which supports patients undergoing mastectomy. It is unclear whether this is because there is little ophthalmic research available and, possibly, less knowledge among healthcare providers about the long-term impact on patients. But wouldn’t patients who undergo eye removal surgery also require more (post)operative care? In my thesis, I therefore do not refer to the procedure as evisceration or enucleation, but rather as an eye amputation. It immediately conveys the impact: “The patient loses not only an organ that may still be functional, but also part of their face and, for some, even part of their personality.” (Rasmussen, 2010)
Intervention
The research findings have led to a two-part intervention within our department. The first component involves providing tailored, patient-centered information before and around the time of surgery, with a particular focus on the impact of the procedure and concerns about appearance. The second component involves assigning a nurse practitioner as the primary care provider to improve continuity of care. The nurse practitioner can provide both medical and nursing care—such as all postoperative medical follow-ups—as well as offer information and devote time and attention to psychosocial support. In addition, the nurse specialist acts as a case manager for the patient, serving as a sort of “link” between the various members of the multidisciplinary team. This team also includes various ophthalmologists, an ocularist (maker of the ocular prosthesis), and a humanistic counselor (who provides support with the psychological impact). The nurse specialist also refers patients to the patient association or other disciplines.
Collaboration with an ocularist
Frédérique Bak works as an ocularist and creates prosthetic eyes. Her job as an ocularist is to make the prosthetic eye as comfortable and aesthetically pleasing as possible. And no matter how beautiful this prosthesis may be, it can never restore the patient’s natural eye. To achieve the best possible result, she collaborates with a multidisciplinary team; there is a weekly joint consultation with the nurse specialist, and an ophthalmologist also attends these sessions once a month. Together with the patient, we determine what is needed to achieve the best possible outcome and then coordinate our care accordingly.
Humanist counselor on the team
Willem Blokland works as a humanist counselor and, among other things, supports patients who have had an eye removed. When an eye must be removed, it can be a traumatic experience. This impact can shake your very foundation as a person and throw you off balance. A humanist counselor can offer support with the existential questions patients may face, or with the journey toward coming to terms with and accepting everything that has happened to them or that they are facing.
Ask for help and get the information you need
Together with our multidisciplinary team, we aim to reduce the anxiety patients experience regarding eye removal, improve care, and ensure the best possible outcome—both physically (comfort and aesthetics) and mentally (psychosocial support). We recognize that the impact of eye removal can be significant. It is therefore normal for patients to experience a range of emotions surrounding eye removal surgery or to encounter problems (sometimes years) later. As a patient, please don’t hesitate to ask for help, seek information, and explore your options together with your healthcare provider or patient advocacy group.
