What matters most to people with metastatic uveal melanoma? A qualitative study to inform future measurement of health-related quality of life.

Metastatic uveal melanoma (mUM) is a rare cancer with poor prognosis, but novel treatments are emerging. Currently, there are no mUM-specific health-related quality of life (HRQL) questionnaires available for clinical research. We aimed to explore how mUM and its treatment affect HRQL and assess the content validity of existing questionnaires. Participants were patients with mUM and healthcare professionals involved in their care. Qualitative data were collected using semi-structured interviews and focus groups. Data collection and analysis used an integrative approach involving inductive questions/coding to elicit new concepts and deductive questions/coding based on domains of existing HRQL questionnaires. Initial interviews/focus groups focussed on HRQL questionnaires designed for patients with uveal melanoma or liver metastases. As new concepts were elicited, domains and items from other questionnaires were subsequently added. Seventeen patients and 16 clinicians participated. HRQL concerns assessed by uveal melanoma-specific questionnaires were largely resolved by the time of metastasis. The Functional Assessment of Cancer Therapy - Immunotherapy Module (FACT-ICM) adequately captured most immunotherapy-related side effects during initial treatment cycles. However, most patients emphasised emotional impacts over physical ones, focussing on the existential threat posed by disease amidst uncertainty about treatment accessibility and effectiveness. Patients were also concerned with treatment burden, including time commitment, travel, need for hospitalisation, and expenses. The relative importance of HRQL issues varied over time and across treatment modalities, with no single questionnaire being sufficient. Pending further development and psychometric testing, clinical researchers may need to take a modular approach to measuring the HRQL impacts of mUM.

'I Don't Like Uncertainty, I Like to Know': How and why uveal melanoma patients consent to life expectancy prognostication.

BACKGROUND: Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision-making from conceptualizations of a 'well-considered' decision. METHODS: UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of 'well-considered' decision-making, where 'well-considered' decisions involve consideration of all likely outcomes. RESULTS: Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty. CONCLUSIONS: While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as 'well-considered'. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome. PATIENT OR PUBLIC CONTRIBUTION: This paper is a direct response to a patient-identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants' ideas drove the analysis and shaped the interviews to come.

Prediction of all-cause mortality from 24 month trajectories in patient-reported psychological, clinical and quality of life outcomes in uveal melanoma patients.

A number of patient-reported outcomes (PROs) predict increased mortality after primary cancer treatment. Studies, though, are sometimes affected by methodological limitations. They often use control variables that poorly predict life expectancy, examine only one or two PROs thus not controlling potential confounding by unmeasured PROs, and observe PROs at only a single point in time. To predict all-cause mortality, this study used control variables affording good estimates of life expectancy, conducted multivariate analyses of multiple PROs to identify independent predictors, and monitored PROs two years after diagnosis. We recruited a consecutive sample of 824 patients with uveal melanoma between April 2008 and December 2014. PROs were variables shown to predict mortality in previous studies; anxiety, depression, visual and ocular symptoms, visual function impairment, worry about cancer recurrence, and physical, emotional, social and functional quality of life (QoL), measured 6, 12 and 24 months after diagnosis. We conducted Cox regression analyses with a census date of December 2018. Covariates were age, gender, marital and employment status, self-reported co-morbidities, tumor diameter and thickness, treatment modality and chromosome 3 mutation status, the latter a genetic mutation strongly associated with mortality. Single predictor analyses (with covariates), showed 6-month depression and poorer functional QoL predicting mortality, as did 6-12 month increases in anxiety and 6-12 month decreases in physical and functional QoL. Multivariate analyses using all PROs showed independent prediction by 6-month depression and decreasing QoL over 6-12 months and 12-24 months. Elevated depression scores six months post-diagnosis constituted an increased mortality risk. Early intervention for depressive symptoms may reduce mortality.

Quality of life and treatment-related burden during ocular proton therapy: a prospective trial of 131 patients with uveal melanoma.

BACKGROUND: Proton beam therapy is a well-established treatment option for patients with uveal melanoma (UM). The treatment procedure, in general, includes placing radiopaque clips to ensure exact eye-positioning during radiotherapy, followed by the delivery of proton irradiation. The short-term burden associated with proton therapy in patients with UM has rarely been addressed. In this prospective study, we investigated the physiological and psychological aspects of proton therapy that might affect the well-being of patients during the different stages of treatment. METHODS: During the treatment procedure, we conducted longitudinal assessments of the Quality of life (QOL), organ-specific symptoms, and psychological aspects in patients with UM with three questionnaires (EORTC QLQ-C30, EORTC QLQ-OPT30, and GAD-7). Patients completed questionnaires before clip surgery (T0), before proton therapy (T1), after completing treatment (T2), and three months after treatment completion (T3). We also collected data on tumor characteristics and socio-demographics to identify potential risk factors associated with high treatment burdens. RESULTS: We prospectively included 131 consecutive patients. Questionnaire data showed a significant, temporary decline in global QOL and an increase in eye-related symptoms, as a result of the clip surgery (T0-T1). After treatment completion (T2), global QOL improved gradually, and none of the eye-related symptoms significantly deteriorated over the course of proton therapy. The global QOL returned to baseline levels three months after treatment (T3). We identified baseline anxiety as an independent risk factor for experiencing an acute treatment-related burden. Furthermore, we found interactions between GAD7 and patient sex showing that anxiety had a more pronounced effect on QOL outcome in female patients. CONCLUSION: The short-term treatment-related burden of ocular proton therapy appeared to be largely associated with the preceding clip surgery, rather than the irradiation procedure. We found that anxiety was strongly associated with experiencing QOL issues during the treatment procedure. Our findings could contribute to the development of future strategies for improving the treatment process and psycho-oncologic patient care.

Visual impairment and depression in uveal melanoma: Optimism and pessimism as moderators.

OBJECTIVE: Uveal melanoma, a rare eye cancer, presents potential vision loss and life threat. This prospective, longitudinal study interrogated the predictive utility of visual impairment, as moderated by optimism/pessimism, on depressive symptoms in 299 adults undergoing diagnostic evaluation. METHOD: Depressive symptoms (Center for Epidemiologic Studies Depression Scale), subjective (Measure of Outcome in Ocular Disease vision subscale) and objective (logarithm of the minimum angle of resolution) visual impairment, and optimism/pessimism (Life Orientation Test-Revised) were assessed before diagnostic evaluation and 1 week, 3 months, and 12 months after diagnosis. Multilevel modeling, with repeated measures (Level 1) nested within individuals (Level 2) and imputation of missing data (Blimp software), was performed. RESULTS: Depressive symptoms were significantly more elevated 1 week after diagnosis in cancer patients (n = 107) versus patients not diagnosed with cancer (n = 192). Higher subjective (but not objective) visual impairment predicted greater depressive symptoms (p < .001). Across the entire sample, the two-way (Optimism/Pessimism × Subjective Visual Impairment) interactions were statistically significant (ps < .05), but not the three-way interaction (with diagnosis). The positive association between subjective visual impairment and depressive symptoms was significant at low and moderate levels of optimism (ps < .001), but not at high optimism (p > .05). The association was significant at high and moderate levels (ps < .001), but not low (p > .05) levels of pessimism. CONCLUSIONS: Elevated depressive symptoms are evident in adults who do (vs. do not) receive a diagnosis of uveal melanoma but appear to remit within 3 months. Perceived impaired vision, especially coupled with low optimism or high pessimism, predicts depressive symptoms over time, with implications for intervention. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Predictors of long-term anxiety and depression in uveal melanoma survivors: A cross-lagged five-year analysis.

OBJECTIVE: Cancer survivors commonly experience long-term anxiety and depression. Anxiety and depression might result from problems emerging during survivorship rather than illness and treatment. This study tested three potential causal paths: (a) concerns about physical symptoms and functional problems and fear of cancer recurrence (FCR) arising during survivorship directly cause anxiety and depression, (b) an indirect path whereby FCR mediates effects of concerns about physical symptoms and functional problems on anxiety and depression, and (c) a reciprocal path whereby anxiety and depression cause concerns about physical symptoms and functional problems and FCR, which exacerbate later anxiety and depression. METHODS: Sample of 453 uveal melanoma survivors who completed observations 6-, 12-, 24-, 36-, 48- and 60-months post-diagnosis and did not miss two consecutive observations. Cross-lagged analyses were conducted to predict Hospital Anxiety and Depression Scale subscale scores. Symptoms and functional problems were measured using the EORTC OPT 30 scale, and FCR operationalised by the EORTC OPT 30 worry about recurrence scale. Covariates were age, gender, treatment modality, and visual acuity of the fellow eye and chromosome-3 status (which accurately predicts 10-year survival), worry and anxiety or depression. RESULTS: All paths received some support, although the indirect path emerged only for anxiety in females. Concerns about physical symptoms, functional problems, and FCR originated in survivorship and appeared to both influence and be influenced by anxiety and depression. CONCLUSIONS: Findings emphasise the importance of actively monitoring survivors to prevent, detect, and intervene in the development of anxiety and depression during survivorship.

Psychosocial impact of prognostic genetic testing in uveal melanoma patients: a controlled prospective clinical observational study.

BACKGROUND: The risk of metastases in uveal melanoma can accurately be estimated through genetic analysis of the tumor. A growing number of patients decide to receive information on their prognosis, although this can be extremely burdensome. Studies on the psychosocial impact of testing are sparse. The objective of this study was to examine traits of patients opting for prognostication, to investigate its psychosocial impact and the use of psycho-oncological services over time. We further examined characteristics of patients utilizing these services and risk factors of prolonged psychological distress. DESIGN AND METHODS: This study is a non-randomized controlled prospective clinical observational trial. Patients availing for prognostication formed the test group, while those who opted out constituted the observational group. The psychosocial impact of genetic testing was assessed with the following variables: resilience, social support, fear of tumor progression, depression, general distress, health-related quality of life, estimation of the perceived risk, and the utilization of psycho-oncological interventions. Data were assessed at five different time points over a period of 12 months. We applied binary logistic regression analysis, multiple linear regressions and a mixed model. RESULTS: Of 175 patients, 63 decided to obtain prognostic information. Treatment method (enucleation > brachytherapy), lower social support and higher general distress could significantly predict patient's choice for prognostic testing. After result announcement, perceived risk of metastases was significantly increased in patients with poor prognosis, while it decreased in those with good prognosis. Overall, a significant decrease over time appeared concerning fear of progression, general distress, depression and anxiety. Mental quality of life increased over time. The utilization of psycho-oncological interventions increased significantly after prognostication; however, this was equivalent in the test and observational groups. Female sex, higher general distress and higher anxiety predicted greater use of psycho-oncological interventions. DISCUSSION: Availing of prognostic testing is not associated with poorer subsequent psychological well-being. It rather may help to alleviate distress and promote a more realistic risk perception. However, psychological support should be available to all patients, independent of prognosis and treatment, especially considering that patients with low social support and high distress increasingly opt for prognostication.

The national comprehensive cancer network distress thermometer as a screening tool for the evaluation of quality of life in uveal melanoma patients.

PURPOSE: To assess quality of life (QoL) status via the National Comprehensive Cancer Network (NCCN) distress thermometer as a psychooncological screening tool in uveal melanoma patients. METHODS: One hundred and six consecutive patients suffering from uveal melanoma completed the distress thermometer between 04/2018 and 12/2018. Practical, emotional, family concerned, spiritual, physical and overall distress levels, distribution of distress and subgroup analyses defining groups of potential high distress levels in need of intervention were assessed. Descriptive statistics, cross-tabulations, chi-square and Fisher's exact test as well as correlation coefficients (Spearman's rho) and receiver operating characteristic (ROC) were used for analysis. RESULTS: Patients with higher T-category had significantly more emotional problems and spiritual concerns (p = 0.046 and p = 0.023, respectively). Female patients accounted for higher rates of physical issues (p = 0.034). Lower best corrected visual acuity (BCVA) was correlated with higher distress levels (p = 0.037). Patients resulting in loss of BCVA of ≥3 lines reported higher distress levels (p = 0.029). A distress threshold of 5 on the basis of ROC analysis showed a corresponding sensitivity of 100% and specificity of 76%. CONCLUSION: The NCCN distress thermometer could be integrated well into our clinical routine and proved to be a rapid, yet sensible screening tool for emotional and physical distress in patients with uveal melanoma. Special attention should be paid to patients with higher T-category and patients resulting in lower levels of BCVA. As in patients with different tumour entities, the established distress threshold of ≥5 proposing intervention proved to be adequate for uveal melanoma patients.

Reflections on a Health Psychology Service for Patients with Uveal Melanoma: The Challenge of Psychological Screening and Intervention When Distress is 'Normal'.

We appraise the role of screening for distress as part of health psychology assessment of patients newly diagnosed with cancer. We reviewed records of consecutive patients who accepted a health psychologist's assessment over 4 years, examining convergence and divergence of the result of screening (whether patients reached threshold as 'cases') with the psychologist's clinical judgment of need for intervention. Of 261 patients, 88 (33.7%) were 'cases'. Of these, need for psychological intervention was identified in 70 (79.5%). Of the 173 (66.3%) 'non-cases', need was identified in 59 (34.1%). Examination of cases where the psychologist's judgment diverged from screening showed that 'caseness' can arise from distress that patients can manage themselves and, conversely, that psychological needs arise in the absence of overt distress. Formal screening may not identify need for psychological intervention. The psychologist's role is to make expert judgments of patients' current and future needs. Dialogue with patients should be the vehicle for assessment.

Quality of life: fractionated stereotactic radiotherapy versus enucleation treatment in uveal melanoma patients.

PURPOSE: To report the quality of life and visual functioning in uveal melanoma patients treated with enucleation or fractionated stereotactic radiation therapy (fSRT). METHODS: Uveal melanoma (UM) patients treated with fSRT (n = 65) or enucleation (n = 48) participated in this prospective study. Questionnaires to measure anxiety (State-Trait Anxiety Inventory), subjective distress (Impact of Event Scale) and quality of life (EORTC-QLQ-C30 and National Eye Institute Visual Function Questionnaire (VFQ-25)) were obtained before treatment and 2, 6, 12, 24, 36 and 48 months after treatment. RESULTS: Less peripheral vision was observed until 3 years (p = 0.026) posttreatment in enucleated patients compared to irradiated patients. From 2 months until 3 years posttreatment irradiated patients increase in role functioning-score (p = 0.005), while enucleated patients decrease in score (p = 0.012). Regardless of their treatment, for all patients we measured a reduction in physical functioning (p = 0.035), insomnia (p < 0.001) and in state anxiety from pretreatment until 2 years posttreatment (p < 0.001). An increase in pain overall (p = 0.023) and in emotional functioning is observed 1 year posttreatment (p < 0.001). At baseline, patients with metastases (independent of their treatment) have more subjective distress (p = 0.037) than patients without metastases. The mean 'global health score' overall, without effect of time, was 76.4 (SD: 13.6). CONCLUSION: Enucleated patients had more difficulty working or performing household tasks 2 months posttreatment compared to irradiated patients. Enucleated patients had diminished peripheral vision until 3 years compared to irradiated patients. Overall quality of life is not significantly different between both treatment groups.

Depression in Choroidal Melanoma Patients Treated with Proton Beam Radiotherapy.

AIM: To determine depression in patients with choroidal melanoma (CM) treated with proton beam radiotherapy. PATIENTS AND METHODS: This was a cross-sectional study including 50 patients with CM (50% males, mean age=49.88±6.34 years) and 46 age- and sex-matched healthy controls (52% males, mean age=48.60±8.05 years). Participants completed the Patient Health Questionnaire-9 (PHQ-9) and the Zung Self-Rating Depression Scale (SDS) questionnaires. RESULTS: There was a considerable difference in visual acuity as logarithm of the minimum angle of resolution (logMAR) between the patient and control groups (1.16±0.97 and 0.04±0.05 logMAR, respectively, p<0.0001). Both PHQ-9 and SDS scores differed significantly between the two groups (10.18±4.68 and 8.07±4.90, p=0.04; and 47.94±12.56 and 39.91±8.80, p=0.004, respectively). Scores appeared to be positively correlated with logMAR visual acuity (Spearman rho=0.700, p<0.0001 for PHQ-9; and 0.767, p<0.0001 for SDS), and they were also correlated to each other (Spearman rho=0.759, p<0.0001). CONCLUSION: Patients with CM having undergone proton beam therapy seem to be more depressed compared to a sample of healthy individuals, and the level of depression is correlated with their visual acuity.

Predictors of anxiety and depression 2 years following treatment in uveal melanoma survivors.

OBJECTIVE: We examined the role of posttreatment symptoms and functional problems and of worry about recurrent disease (WREC) in predicting probable anxiety and depression cases 24 months after diagnosis in survivors of posterior uveal melanoma. We examined whether WREC mediates links between symptoms, functional problems, and probable anxiety and depression cases. METHODS: Prospective cohort study of 261 treated uveal melanoma survivors 6, 12, and 24 months after diagnosis. Hierarchical logistic regression analyses predicting anxiety and depression 24 months after diagnosis identified by Hospital Anxiety and Depression Scale cutoff scores. Symptoms, functional problems, and WREC 6-month posttreatment were entered into the analyses as predictors, then the same variables at 12 months. We controlled anxiety or depression at 6 and 12 months and chromosome 3 status, which accurately predicts 10-year survival. Mediation of links between 6-month symptoms and functional problems and 24-month anxiety and depression by 12-month WREC was tested. RESULTS: Anxiety caseness at 24 months was predicted by 6-month ocular irritation, headache, and functional problems and 12-month WREC. Depression caseness at 24 months was predicted by 6-month headache and functional problems. Worry about recurrent disease at 12 months mediated prediction of anxiety caseness by 6-month symptoms and functional problems. Chromosome 3 status predicted neither anxiety nor depression. CONCLUSIONS: Survivors reporting symptoms, functional problems, and WREC should be monitored for anxiety and depression. Appropriate reassurance that symptoms do not signify future disease might help prevent anxiety.

Sociodemographic, Medical, and Psychosocial Factors Associated With Supportive Care Needs in Adults Diagnosed With Uveal Melanoma.

Importance: Understanding supportive care needs in patients with cancer is important for developing approaches that enhance quality of life and promote satisfaction with care. Objective: To characterize the nature and frequency of sociodemographic, medical, and psychosocial factors associated with unmet needs in patients with uveal melanoma 1 week and 3 months after diagnosis. Design, Setting, and Participants: This 3-month, prospective, longitudinal survey study was conducted at a university-based ophthalmology practice from June 1, 2007, to July 1, 2011. Data were analyzed in April 2017. Consecutive patients (n = 429) scheduled for diagnostic evaluation for an intraocular abnormality were assessed for eligibility. Participants were ineligible (n = 25) if they were younger than 18 years, had previous advanced cancer, or evidenced cognitive impairment. Of the patients who provided informed consent (n = 306), those subsequently diagnosed with uveal melanoma by an ophthalmologist (n = 107) were included in the analysis. Main Outcomes and Measures: Unmet needs (ie, desire for help in psychological, physical, health information, communication, or social domains) were assessed using the Cancer Needs Questionnaire. Multivariable regression analyses determined factors associated with unmet need severity across 3 months. Results: One hundred seven patients (58 [54%] men; mean [SD] age, 59.0 [12.8] years) completed the baseline assessment. At 1 week after diagnosis, nearly all patients (85 of 86 [99%]) expressed at least 1 unmet need, as did 68 of 79 (86%) 3 months later. The most frequently endorsed needs were in the health information and psychological domains. Patients' unmet needs declined significantly over 3 months (mean [SD] change, -10.0 [14.4]; 95% CI, -6.4 to -13.6; t = -5.6). Sociodemographic and medical characteristics were unrelated to unmet need severity. However, higher prediagnosis instrumental social support (b = -0.2; 95% CI, -0.3 to -0.1; z = -2.8) and lower neuroticism (b = 0.3; 95% CI, 0.1-0.5; z = 2.9) predicted lower unmet need severity 1 week after diagnosis. Having a smaller social network predicted lower unmet need severity 3 months after diagnosis (b < 0.1; 95% CI, <0.1 to <0.1; z = 2.4) as well as a decline in needs from diagnosis to 3 months later (b < 0.1; 95% CI, <0.1 to <0.1; z = 2.3). Conclusions and Relevance: Within 1 week after diagnosis and 3 months later, most patients with uveal melanoma cited important health information and psychological needs. These findings suggest that prior to or at diagnosis, the severity of such needs and psychosocial factors that may be associated can be identified for proactive supportive intervention.

Long-term uveal melanoma survivors: measuring their quality of life.

PURPOSE: Patients with uveal melanoma (UM) undergo lifelong follow-up as metastases can occur more than 20 years after diagnosis. Little is known about the quality of life (QoL) of UM survivors over such an extended period. To investigate their QoL, we used various estimating factors. METHODS: A cohort of patients diagnosed and treated for UM with regularly scheduled follow-up visits was asked to fill in a European Organization for Research and Treatment of Cancer (EORTC) questionnaire comprised of the EORTC QLQ-C30 and EORTC QLQ-OPT30 modules. An additional open question examined other changes in the patients' lifestyle since diagnosis. Independent demographic and medical data were collected from patient records. RESULTS: Two hundred and thirty-two of 294 patients agreed to complete the questionnaire. General QoL correlated highly with the eye-related QoL. Statistically significant higher QoL was associated with tumours not involving the ciliary body, and with better best-corrected visual acuity (BCVA). A subgroup of 39% of the patients reported severe disability affecting eye-related tasks. Thirty-three per cent were highly concerned about various aspects of their future health. Patients who underwent enucleation reported lower eye-related QoL and described problems related to body image in response to the open question. CONCLUSION: General QoL of UM patients is only slightly affected by their malignancy. However, body image and psychosocial adjustment are major issues involved in evaluating QoL. Continuous long-term psychosocial treatment is needed from the time of diagnosis in a subgroup of patients suffering from eye-related disabilities.

The use of semistructured interviews to assess quality of life impacts for patients with uveal melanoma.

OBJECTIVE: There are limited studies on uveal melanoma and patient quality of life. However, the burden of implementing a patient-reported outcome measure to collect this information in a clinical setting is unknown. The objectives of this study were (i) to understand the issues of quality of life that are most important to patients undergoing treatment for uveal melanoma, (ii) to explore patient views on the European Organization for Research and Treatment of Cancer's (EORTC) ophthalmic oncology quality of life questionnaire (QLQ-OPT30), and (iii) to assess patient willingness to complete questionnaires measuring quality of life on an ongoing basis. DESIGN: This was a qualitative study. PARTICIPANTS: The study included 10 patients treated for uveal melanoma with brachytherapy at the Alberta Ocular Brachytherapy Program, with a mean follow-up period of 16.3 months (range 5-33 months) after diagnosis. METHODS: The participants completed a qualitative interview over the phone with a trained interviewer between November 2014 and January 2015. Participants completed the QLQ-OPT30 according to their current symptoms and then elaborated on their responses. The participants then completed a semistructured interview to provide more information about the symptoms or issues that had the most impact on quality of life. RESULTS: The participants expressed positive feelings about the QLQ-OPT30; however, the participants' responses revealed that several themes, including mental health, impact of diagnosis and treatment on family, travel and financial burdens of treatment, and impact on work and home life, were missing in the questionnaire. CONCLUSIONS: The QLQ-OPT30 performed well, but some missing constructs were identified. Furthermore, participants took 23 minutes to complete the QLQ-OPT30 with a trained interviewer, and this could present logistical challenges when using it at the point of care.

Two-year patient-reported outcomes following treatment of uveal melanoma.

PurposeTreatment of uveal melanoma can impair patients' psychological well-being. We evaluated patient-reported outcome measures (PROMs) of anxiety, depression, and quality of life (QoL) over 2 years following treatment in a consecutive sample of uveal melanoma patients, compared observations to population normative values and examined whether outcomes differed according to patients' age, gender, and whether or not they were treated by enucleation or had a poor prognosis (presence of monosomy 3).DesignProspective longitudinal study.ParticipantsPatients (N=411) with uveal melanoma treated between 2008 and 2011.MethodsSelf-report questionnaire study. We compared mean PROMs scores obtained 6 months, 1 year, and 2 years after treatment to published population normative values using 2-sample t-tests, and tested the association of these scores with gender, age, treatment by enucleation, and monosomy 3 using mixed-model ANOVAs.ResultsOn QoL and depression, patients were similar to or better than normative values at all time points, but there was some evidence that females were more anxious than female normative values (Ps<0.001-<0.05). Younger patients (P<0.01) and female patients (P<0.01) were the most anxious overall. Enucleation was not associated with PROMs. Patients with monosomy 3 showed more depressed mood at all the three time points (P<0.05).ConclusionsPatients treated for uveal melanoma can expect, within 6 months of treatment, to have a QoL that is similar to that of the general population. Younger female patients and patients with monosomy 3 are more likely to be distressed, and clinicians will need to be alert to this.

Psychosocial impact of prognostic genetic testing in the care of uveal melanoma patients: protocol of a controlled prospective clinical observational study.

BACKGROUND: Uveal melanoma patients with a poor prognosis can be detected through genetic analysis of the tumor, which has a very high sensitivity. A large number of patients with uveal melanoma decide to receive information about their individual risk and therefore routine prognostic genetic testing is being carried out on a growing number of patients. It is obvious that a positive prediction for recidivism in the future will emotionally burden the respective patients, but research on the psychosocial impact of this innovative method is lacking. The aim of the current study is therefore to investigate the psychosocial impact (psychological distress and quality of life) of prognostic genetic testing in patients with uveal melanoma. DESIGN AND METHODS: This study is a non-randomized controlled prospective clinical observational trial. Subjects are patients with uveal melanoma, in whom genetic testing is possible. Patients who consent to genetic testing are allocated to the intervention group and patients who refuse genetic testing form the observational group. Both groups receive cancer therapy and psycho-oncological intervention when needed. The psychosocial impact of prognostic testing is investigated with the following variables: resilience, social support, fear of tumor progression, depression, general distress, cancer-specific and general health-related quality of life, attitude towards genetic testing, estimation of the perceived risk of metastasis, utilization and satisfaction with psycho-oncological crisis intervention, and sociodemographic data. Data are assessed preoperatively (at initial admission in the clinic) and postoperatively (at discharge from hospital after surgery, 6-12 weeks, 6 and 12 months after initial admission). Genetic test results are communicated 6-12 weeks after initial admission to the clinic. DISCUSSION: We created optimal conditions for investigation of the psychosocial impact of prognostic genetic testing. This study will provide information on the course of disease and psychosocial outcomes after prognostic genetic testing. We expect that empirical data from our study will give a scientific basis for medico-ethical considerations.

Depression, Anxiety, and Regret Before and After Testing to Estimate Uveal Melanoma Prognosis.

IMPORTANCE: To our knowledge, longitudinal assessment of depression, anxiety, and decision regret (a sense of disappointment or dissatisfaction in the decision) in patients undergoing prognostication for uveal melanoma does not exist. OBJECTIVE: To report on depression, anxiety, and decision regret before and after testing to estimate uveal melanoma prognosis. DESIGN, SETTING, AND PARTICIPANTS: Prospective interventional case series conducted at an institutional referral practice of 96 patients with clinical diagnosis of uveal melanoma who underwent prognostication at the time of primary therapy. MAIN OUTCOMES AND MEASURES: Depression, anxiety, and decision regret prior to prognostication (baseline) and at 3 and 12 months afterwards. The Hospital Anxiety and Depression Scale (HADS) and Decision Regret Scale were self-administered by the patients prior to prognostication (baseline) and at 3 and 12 months afterwards. Data were summarized using means and standard deviations for continuous measures, frequencies, and percentages for categorical factors. A mixed model was used to assess the trajectory of HADS anxiety and the associations between HADS anxiety and baseline HADS depression, baseline decision regret, prognostication test result, and adjuvant therapy, respectively, while adjusting for age and sex. RESULTS: Ninety-six patients (median age 60.7 years) completed baseline questionnaires. The mean (SD) HADS anxiety score at baseline (7.4 [4.0]) was higher than at 3 months (5.4 [3.7]; P < .001) or 12 months (4.7 [3.4]; P < .001), and decreased with older age (coefficient estimate [SD], -0.06 [0.02]; P < .001). The decision regret score was associated with baseline HADS depression score (coefficient estimate [SE], -1.17 [0.43]; P < .007), and HADS depression score increased with baseline HADS anxiety score (coefficient estimate [SE], 0.39 [0.06]; P < .001). CONCLUSIONS AND RELEVANCE: Our study raises questions about decision regret in patients who agree to have a prognostic test that may not help guide treatment. Although decision regret appears to lessen or dissipate with time, study on larger numbers of patients is necessary to elucidate factors that may be addressed to mitigate decision regret.

Quality of life in the follow-up of uveal melanoma patients after enucleation in comparison to CyberKnife treatment.

PURPOSE: To compare quality of life (QoL) in patients with uveal melanoma after enucleation and stereotactic radiosurgery to that in an age-matched patient collective. METHODS: QoL was assessed in a cross-sectional survey and compared among 32 uveal melanoma patients after enucleation, 48 patients after stereotactic radiosurgery (CyberKnife(®); Accuray(®) Incorporated, Sunnyvale, CA, USA), and an age-matched control group of 35 patients, using the SF-12 Health Survey. Statistical analysis was performed with Fisher's exact test, Student's t test, one-way ANOVA analysis, Wilcoxon rank-sum (Mann-Whitney test), and ordered logistic regression for multivariate analysis. RESULTS: There was no significant difference in QoL between patients treated by stereotactic radiosurgery and the age-matched control group. After enucleation, patients presented significantly lower values in Physical Functioning (PF), Role Physical (RP), and Role Emotional (RE) compared to the radiosurgery and control group. To control for the overall QoL lowering effect of visual loss, the QoL of the patients who underwent enucleation was compared with the QoL of patients suffering severe functional loss after CyberKnife radiosurgery in a subgroup analysis, which showed no statistically significant difference. The number of comorbidities had a significant impact on QoL in multivariate analysis. CONCLUSIONS: Superior performance in PF, RP, and RE suggests that CyberKnife represents a suitable first-line therapy for uveal melanoma. In cases with painful amaurosis or vast tumor recurrence, enucleation can be performed with an acceptable QoL outcome.

Phantom Eye Syndrome: Patient Experiences after Enucleation for Uveal Melanoma.

PURPOSE: Patients undergoing enucleation for uveal melanoma need to be informed of the possibility of phantom eye syndrome (PES). The number with uveal melanoma in PES studies has been small. Aims were to: (1) determine the prevalence, symptoms, and characteristics of PES and to test associations of PES symptoms with sociodemographic and clinical characteristics; (2) examine the interrelatedness of PES symptoms; and (3) explore the emotional valence of PES and the relationship to anxiety and depression. DESIGN: Cross-sectional questionnaire. PARTICIPANTS: Patients (n = 179) with uveal melanoma enucleated 4 to 52 months previously. METHODS: Questionnaire on PES. Responses to a routine audit of mood obtained from clinical records. MAIN OUTCOME MEASURES: Patients were asked about 3 symptoms: pain, visual sensations, and a feeling of seeing through the removed eye. Mood was assessed by the Hospital Anxiety and Depression Scale. RESULTS: Of 179 respondents, 108 (60.3%) experienced symptoms: 86 reported (48%) visual sensations, 50 reported (28%) seeing, and 42 reported (23%) pain; 14 (7.8%) reported all 3 symptoms. At the time of the questionnaire, 31 (17%) experienced 1 or more symptoms daily. Women were more likely to report pain (odds ratio [OR], 2.18; 95% confidence interval [CI], 1.08-4.40). Younger patients at enucleation were more likely to report pain (t = 4.13; degrees of freedom (df), 177; P < 0.001) and visual sensations (t = 2.11; df, 177; P < 0.05). Patients studied sooner after enucleation were more likely to report seeing (Mann-Whitney U, 2343; P < 0.05). Pain and seeing were intercorrelated (chi-square, 5.47; Φ = 0.18; df, 1; P < 0.05), pain with visual sensations (chi-square, 3.91; Φ = 0.15; df, 1; P < 0.05) and seeing with visual sensations (chi-square, 34.22; Φ = 0.45; df, 1; P < 0.001). Twenty of 108 patients (18.5%) found symptoms disturbing, and 21 of 108 (19.4%) pleasurable. Patients reporting pain were more anxious (OR, 3.53; 95% CI, 1.38-9.03) and depressed (OR, 13.26; 95% CI, 3.87-46.21). CONCLUSIONS: Patients should be informed of PES symptoms. Pain may indicate anxiety or depression; this needs research to determine cause and effect.