Understanding quality of life issues in patients with advanced melanoma: Phase 1 and 2 in the development of the EORTC advanced melanoma module.

AIMS: We aimed to develop a European Organization for Research and Treatment of Cancer (EORTC) Quality of Life (QoL) module tailored for patients with advanced (resectable or unresectable stage III/IV) melanoma receiving immune checkpoint inhibitors or targeted therapy. METHODS: Following the EORTC QoL Group module development guidelines, we conducted phases 1 and 2 of the development process. In phase 1, we generated a list of health-related (HR)QoL issues through a systematic literature review and semi-structured interviews with healthcare professionals (HCPs) and patients with advanced melanoma. In phase 2, these issues were converted into questionnaire items to create the preliminary module. RESULTS: Phase 1: we retrieved 8006 articles for the literature review, of which 35 were deemed relevant, resulting in 84 HRQoL issues being extracted to create the initial issue list. Semi-structured interviews with 18 HCPs and 28 patients with advanced melanoma resulted in 28 issues being added to the initial issue list. Following EORTC module development criteria, 26 issues were removed, and two issues were added after review by patient advocates. Phase 2: To ensure uniformity and avoid duplication, 16 issues were consolidated into eight items. Additionally, an independent expert contributed one new item, resulting in a preliminary module comprising 80 HRQoL items. CONCLUSION: We identified a range of HRQoL issues (dry skin, xerostomia, and arthralgia) relevant to patients with stage III/IV melanoma. Future module development phases will refine the questionnaire. Once completed, this module will enable standardized assessment of HRQoL in patients with (locally) advanced melanoma.

Attitudes toward genetic testing, family planning and preimplantation genetic testing in families with a germline CDKN2A pathogenic variant.

Individuals with a germline CDKN2A pathogenic variant (PV) have a highly increased life time risk of melanoma and pancreatic cancer. This cross-sectional study assessed the attitudes among toward genetic testing, family planning, and preimplantation genetic testing (PGT) in confirmed CDKN2A PV carriers and individuals with a 50% risk of the PV (at-risk carriers) using of a one-time questionnaire.A total of 537 individuals were screened for eligibility, of whom 208 of 366 (57%) confirmed carriers (56% female, median age 54 years [IQR 46-63]) and 39 of 171 (23%) at-risk carriers (59% female, median age of 26 years [IQR 22-32]) participated in the study. Primary motivations for genetic testing were to gain control over their personal and children's cancer risk, as well as increasing cancer surveillance practices. In contrast, concerns about obtaining a mortgage and life insurance were frequently cited as reasons for postponing genetic testing. Family planning decisions remained largely unaffected in both confirmed and at-risk carriers; however, the majority of confirmed carriers were still unaware of their familial or personal cancer risk when starting a family. More than 60% of the participants were unfamiliar with PGT and only a minority (19% of confirmed carriers and 10% of at-risk carriers) would be open to considering PGT as a reproductive option. This study found different attitudes toward genetic testing, family planning, and PGT among individuals affected by the CDKN2A PV. Understanding these different attitudes can help clinicians to address the complexities surrounding these issues, especially for younger individuals facing difficult decisions about the timing of genetic testing, family planning, and the potential use of assisted reproductive options.

[Outpatient psychosocial screening in a skin cancer center: acceptance, psychosocial distress and utilization of support : A post hoc analysis in a quality management program]. / Ambulantes psychosoziales Screening in einem Hautkrebszentrum: Akzeptanz, psychosoziale Belastung und Inanspruchnahme von Beratungsangeboten : Eine Post-hoc-Analyse im Rahmen der Qualitätssicherung.

BACKGROUND: Psychosocial care of cancer patients is an important aspect throughout the entire course of oncological treatment. Since 2015, psychosocial screening has been implemented in the outpatient clinics of the Skin Cancer Center in Freiburg. We present here a post hoc analysis in the context of a quality management program. QUESTION: Acceptance, psychosocial distress and desire for counseling were evaluated. Exploratively, we investigated which patient and disease characteristics are related to increased subjective distress. MATERIALS AND METHODS: In a full survey from 06/2015 to 12/2015, we evaluated acceptance, psychosocial distress by distress thermometer (DT), and desire for counseling. RESULTS: Of 753 patients, 345 (45.8%) participated in psychosocial screening and data from 310 (174 men, 136 women; 89.7% melanoma patients, mean time since initial diagnosis 4.7 ± 3.9 years) could be analyzed. The mean burden on the DT was 2.97 ± 2.83 (median 2, range 0-10). High distress (DT ≥ 5) was reported by 84 patients (28.8%). Thirty-four patients (11%) indicated a desire for counseling, and 23 patients took up the counseling offer. The patient group with high distress was younger, more often under ongoing or recently completed systemic therapy, and had more often a desire for counseling. CONCLUSION: In addition to assessing psychosocial distress with validated screening instruments, the survey of the subjective desire for care represents an important parameter for the identification of patients in need of care. Young patients and patients with ongoing systemic therapy should be the focus of attention.

Outdoor workers' perceptions of skin cancer prevention: a qualitative study.

OBJECTIVES: Outdoor workers are at increased risk for skin cancer and melanoma. This qualitative study aimed to explore outdoor workers' perspectives and experiences of primary (i.e. sun protection) and secondary prevention, i.e. skin self-examination (SSE) of skin cancer. METHODS: Purposive, snowball, and theoretical sampling was used to recruit outdoor workers in Kentucky and Indiana. Semi-structured interviews via telephone or videoconference of approximately 45 min were conducted with interviewer probes and questions about perceptions of cancer risk, prevention, and screening techniques conducted, perceived barriers and facilitators, and preferences for health dissemination venues. The recordings were transcribed verbatim and de-identified. Analysis involved constructivist grounded theory coding strategies. Using peer debriefing and consensus building around themes, the researcher established a codebook for all interviews to utilize within Dedoose software for systematizing and organizing data. RESULTS: Eighteen interviews were conducted. Interviewees (N = 18) ranged in age from 35 to 78 yr, with 3 females. Outdoor industries included agriculture, maintenance, and grounds maintenance. Themes derived from the data showed the underlying factors and perceptions that influence outdoor workers to conduct primary and secondary cancer prevention activities. The level of alarm attributed to disease and the level of trust in information contribute to intentions to conduct activities. The intentions and trust toward healthcare institutions and providers drive the primary or secondary prevention behaviors. Cultural and contextual factors included masculinity and self-sufficiency, familial and occupational priorities, and community ties. CONCLUSIONS: These data provide a basis for developing future communications and interventions to decrease skin cancer incidence in outdoor workers. They indicate that secondary prevention and building self-efficacy in conducting SSE should be emphasized in tandem or over primary skin cancer prevention methods in this population. Trusted local healthcare providers should primarily provide prevention information, and materials should utilize testimonials from the local community to best influence this population. Communications and training interventions are needed in this population to induce a proactive level of alarm about cancer and result in the performance of SSE.

Stressful life events and the occurrence of skin cancer.

OBJECTIVE: It is widely acknowledged that emotional states can influence skin conditions, yet limited research has delved into the impact of stress on skin cancer development. This retrospective study sought to expand the perspective on skin cancer risk factors by investigating the complex relationship between stressful life events and the incidence of skin cancer. METHODS: The sample included 268 individuals followed-up in a dermatological clinic, in three groups: Patients who had previously been diagnosed with cutaneous melanoma and are currently in remission (32%), those who had been diagnosed with non-melanoma skin cancer (30%), and a control group who are at risk for skin cancer (38%). Participants filled in questionnaires regarding childhood and adulthood life events, and loss and gain of resources following their subjectively most stressful event in adulthood. Multinomial logistic regression was used to examine the associations of life events with skin cancer occurrence, and mediating and moderating effects of resource loss/gain. RESULTS: Adverse childhood experiences were associated with melanoma occurrence, with the melanoma group reporting significantly more such experiences compared to the control group (p < 0.001). Resource loss from subjectively significant stressful life events in adulthood partially mediated the association between adverse childhood experiences and melanoma incidence. CONCLUSIONS: The findings suggest that there may be intricate connections between stress, life events, adaptation to change, and skin cancer, which future research may further unravel. This study underscores the need for a more comprehensive approach to stress management, coping strategies development, and skin cancer prevention in healthcare settings.

Associations between empirically proportionate and disproportionate fears of cancer recurrence and anxiety and depression in uveal melanoma survivors: Five-year prospective study.

OBJECTIVE: Fear of cancer recurrence (FCR) may develop into elevated anxiety or depression symptoms, but few risk factors for this development are known. Objective recurrence risk estimation is possible in some cancers. Using theories of risk communication and phobias, we examined whether the proportionality of FCR to known objective recurrence risk influences the development of anxiety and depression symptoms. METHOD: Uveal melanoma (UM) patients can opt for reliable prognostic testing. Patients experience either a 'good' or 'poor' prognostic outcome, whereby 10-year mortality due to metastatic disease is, respectively, low or high. In a five-year prospective study of a consecutive sample of 589 UM survivors, we used random intercept cross lagged panel analyses to examine whether proportionality differentially influences whether FCR progresses to anxiety and depression. RESULTS: Positive cross paths predicting anxiety from FCR were stronger in the poor prognosis group than the good prognosis and not tested groups. Prognostic group differences were not evident for depression. CONCLUSIONS: FCR was more likely to progress to elevated anxiety symptoms when proportionate to the known objective recurrence risk. Objective evidence may play a prominent role in the development and structure of fear because it assumes a high epistemic weight that activates a wide range of emotional and cognitive responses. Interventions that assist survivors to tolerate FCR in the presence of higher recurrence risks may be important in reducing anxiety symptoms.

Using the Behaviour Change Wheel to identify barriers and targeted strategies to improve adherence in randomised clinical trials: The example of MEL-SELF trial of patient-led surveillance for melanoma.

BACKGROUND: Adherence to self-management interventions is critical in both clinical settings and trials to ensure maximal effectiveness. This study reports how the Behaviour Change Wheel may be used to assess barriers to self-management behaviours and develop strategies to maximise adherence in a trial setting (the MEL-SELF trial of patient-led melanoma surveillance). METHODS: The Behaviour Change Wheel was applied by (i) using the Capability, Opportunity, Motivation-Behaviour (COMB) model informed by empirical and review data to identify adherence barriers, (ii) mapping identified barriers to corresponding intervention functions, and (iii) identifying appropriate behaviour change techniques and developing potential solutions using the APEASE (Affordability, Practicability, Effectiveness and cost-effectiveness, Acceptability, Side-effects and safety, Equity) criteria. RESULTS: The target adherence behaviour was defined as conducting a thorough skin self-examination and submitting images for teledermatology review. Key barriers identified included: non-engaged skin check partners, inadequate planning, time constraints, low self-efficacy, and technological difficulties. Participants' motivation was positively influenced by perceived health benefits and negatively impacted by emotional states such as anxiety and depression. We identified the following feasible interventions to support adherence: education, training, environmental restructuring, enablement, persuasion, and incentivisation. Proposed solutions included action planning, calendar scheduling, alternative dermatoscopes, optimised communication, educational resources in various formats to boost self-efficacy and motivation and optimised reminders (which will be evaluated in a Study Within A Trial (SWAT)). CONCLUSION: The Behaviour Change Wheel may be used to improve adherence in clinical trials by identifying barriers to self-management behaviours and guiding development of targeted strategies.

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.

Lived Experiences and Fear of Cancer Recurrence Among Survivors of Localized Cutaneous Melanoma.

Importance: Most of the rapid increase in cutaneous melanoma incidence in the US has been localized disease that is treated surgically and is associated with high survival rates. However, little is known about the psychological well-being of survivors in the US. Objective: To explore the lived experiences and fear of cancer recurrence among survivors of localized cutaneous melanoma. Design, Setting, and Participants: This was a qualitative and survey-based study that used semistructured interviews and the Fear of Cancer Recurrence Inventory short form (FCRI-SF) survey tool with participants recruited from an academic dermatology practice affiliated with the University of Texas, Austin. Interviews were completed via telephone or in person from August 2021 to September 2022. Each of the 9 items in the FCRI-SF was rated on a 5-point Likert scale, scored from 0 to 4, with a maximum possible score of 36 points. Data analyses were performed from February 2022 to June 2023. Main Outcomes and Measures: Semistructured interviews were analyzed for themes and subthemes associated with the lived experiences of survivors of cutaneous melanoma. The FCRI-SF scores were tabulated, with scores of 13 or greater identifying potential cases of clinically significant fear of cancer recurrence. Results: In all, 51 participants (mean [SD] age, 49.5 [11.7] years; 34 [67%] female and 17 [33%] male) with a history of localized melanoma (stage 0-IIA) completed the interview and survey. Among them, 17 (33%) had survived a diagnosis of stage 0 melanoma, and the remainder, at least 1 invasive melanoma diagnosis (stage I-IIA). Semistructured interviews revealed several themes: (1) emotions surrounding follow-up appointments, (2) intensity of melanoma surveillance, (3) lifestyle changes regarding sun exposure, and (4) thoughts about life and death. Thirty-eight of 51 participants had an FCRI-SF score above the threshold for clinical fear of cancer recurrence. Conclusions and Relevance: This qualitative and survey-based study found that despite having an excellent prognosis, some survivors of localized melanoma, even those who had stage 0, have high rates of fear of cancer recurrence and intense survivorship experiences that affect their psychological well-being.

Prevalence and odds of anxiety and depression in cutaneous malignant melanoma: a proportional meta-analysis and regression.

BACKGROUND: The psychological burden of cutaneous malignant melanoma (CM) is all-encompassing, affecting treatment adherence, recurrence and mortality. However, the prevalence and risk factors of anxiety and depression in CM remain unclear. OBJECTIVES: To establish a benchmark pooled prevalence of anxiety and depression in CM, to provide magnitudes of association for clinical, therapeutic and demographic correlates, and to elucidate temporal trends in anxiety and depression from the time of diagnosis. METHODS: This review followed the MOOSE guidelines. MEDLINE, Embase, PsychINFO, Web of Science and the Cochrane Library were queried from database inception to 24 August 2023. Study selection, data extraction and quality assessment were performed by two independent authors, utilizing both the Joanna Briggs Institute (JBI) and National Institutes of Health risk-of-bias tools for the latter. The GRADE approach was used to rate the certainty of evidence. Prevalence rates, 95% confidence intervals (CIs) and prediction intervals (PIs) were derived using a random-effects model and estimating between- and within-study variance. RESULTS: Nine longitudinal and 29 cross-sectional studies were included (7995 patients). Based on the JBI and NIH tools, respectively, quality assessment found 20 and 17 to be at low risk of bias, 12 and 15 to be at moderate risk and 6 and 5 to be at high risk of bias. The prevalence of anxiety [30.6% (95% CI 24.6-37.0; PI 18-47%)] and depression [18.4% (95% CI 13.4-23.9; PI 10-33%)] peaked during treatment, declining to pretreatment levels after 1 year [anxiety: 48% vs. 20% (P = 0.005); depression: 28% vs. 13% (P = 0.03)]. Female sex [odds ratio (OR) 1.8, 95% CI 1.4-2.3; P < 0.001], age < 60 years (OR 1.5, 95% CI 1.2-2.0; P = 0.002) and low educational level (OR 1.5, 95% CI 1.2-2.0; P < 0.001) were likely to result in a large increase in the odds of anxiety. Depression was 12.3% higher in those with stage IV vs. those with stage I CM (P = 0.05). Relative to immune checkpoint inhibition, the rates of depression were 22% (P = 0.002) and 34% (P < 0.001) higher among patients with advanced-stage CM receiving interferon-α and chemotherapy, respectively. A significant reduction in self-reported depression scores was demonstrated over time (P = 0.003). CONCLUSIONS: Notably, anxiety and depression in CM affect women, those younger than 60 years of age and the less educated, with up to 80% higher odds of anxiety in these groups. Anxiety and depression surge during chemotherapy and interferon treatment, especially in advanced CM. Our findings facilitate risk stratification and underscore the need for multidisciplinary vigilance.

Melanoma is a serious type of skin cancer that is becoming more prevalent, particularly in people with lighter skin. The UK-based ReconRegen research group conducted a study to understand the psychological impact of melanoma on people, focusing on anxiety and depression. To do this, a systematic review approach was used to analyse data from existing studies and gather a comprehensive perspective. The study discovered that 30% of people with melanoma are affected by anxiety and 18% by depression, significantly higher than the general population. Key risk factors for anxiety included being female, being younger than 60 years of age and having lower educational attainment. Women are 1.8 times more likely to experience anxiety than men, those under 60 years of age are 1.5 times more likely to experience it and individuals with lower educational levels are also 1.5 times more likely to experience anxiety. Findings showed that anxiety and depression levels peaked during treatment phases, especially in people undergoing chemotherapy and immunotherapy. This highlights the need for targeted mental health support during these treatment periods. The findings advocate for mental health considerations in melanoma care, suggesting regular mental health assessments, particularly for high-risk groups and during intense treatment phases. Highlighting the importance of a holistic treatment approach, the study suggests that future research should include long-term studies to understand the chronic impacts of anxiety and depression. Improved clarity and detail in research reporting are essential for developing effective mental health support for people with melanoma, enhancing overall patient care by addressing both physical and emotional health needs.

The Family Lifestyles, Actions and Risk Education (FLARE) study: Protocol for a randomized controlled trial of a sun protection intervention for children of melanoma survivors.

BACKGROUND: Children of parents who had melanoma are more likely to develop skin cancer themselves owing to shared familial risks. The prevention of sunburns and promotion of sun-protective behaviors are essential to control cancer among these children. The Family Lifestyles, Actions and Risk Education (FLARE) intervention will be delivered as part of a randomized controlled trial to support parent-child collaboration to improve sun safety outcomes among children of melanoma survivors. METHODS: FLARE is a two-arm randomized controlled trial design that will recruit dyads comprised of a parent who is a melanoma survivor and their child (aged 8-17 years). Dyads will be randomized to receive FLARE or standard skin cancer prevention education, which both entail 3 telehealth sessions with an interventionist. FLARE is guided by Social-Cognitive and Protection Motivation theories to target child sun protection behaviors through parent and child perceived risk for melanoma, problem-solving skills, and development of a family skin protection action plan to promote positive modeling of sun protection behaviors. At multiple assessments through one-year post-baseline, parents and children complete surveys to assess frequency of reported child sunburns, child sun protection behaviors and melanin-induced surface skin color change, and potential mediators of intervention effects (e.g., parent-child modeling). CONCLUSION: The FLARE trial addresses the need for melanoma preventive interventions for children with familial risk for the disease. If efficacious, FLARE could help to mitigate familial risk for melanoma among these children by teaching practices which, if enacted, decrease sunburn occurrence and improve children's use of well-established sun protection strategies.

Seven-year distress trajectories in uveal melanoma survivors.

OBJECTIVE: Severe or persistent distress is associated with poorer quality of life in cancer survivors. Distress follows distinct trajectories within different population subgroups. Identifying characteristics and causes of trajectories can assist intervention development and targeting. In a 7-year study of uveal melanoma survivors, we aimed to characterize anxiety, depression, and fear of cancer recurrence (FCR) trajectories, and identify whether concerns about symptoms and functional problems over the first 3 years of survivorship predict memberships of high distress trajectories. METHOD: In a closed cohort study, we used growth mixture modeling (GMM) to identify statistically optimal trajectories over 6-, 12-, 24-, 36-, 48-, 60-, 72-, and 84-month time point posttreatment in 475 patients. We then regressed trajectory memberships onto a 3-year series of measures of concerns about symptoms and functional problems, controlling demographic, clinical, and 6-month anxiety, depression, or FCR indicators. RESULTS: Anxiety, depression, and FCR were represented by two-class linear GMMs. The majority scored consistently low, but 17.5% showed consistently elevated anxiety, 10.9% consistently elevated depression, and 19.4% consistently elevated FCR. Higher anxiety trajectory membership was predicted by greater concerns about symptoms at 6 and 24 months, higher depression trajectory membership by symptoms at 24 months, and higher FCR trajectory membership by symptoms at 6 and 24 months and functional problems at 12 months. CONCLUSIONS: Much of the burden of persistent distress in cancer patients falls on a small proportion of survivors. Concerns about symptoms and functional problems are potential risk factors for distress. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Fear of cancer recurrence in patients with non-metastatic melanoma: Spanish validation and disease-related factors.

INTRODUCTION: It is essential for clinicians to understand the phenomenon of fear of cancer recurrence (FCR) in order to understand the psychological impact it has on patients with melanoma. OBJECTIVES: To validate an FCR questionnaire in Spanish for patients with non-metastatic melanoma and to describe the clinical and demographic variables associated with FCR in these patients. METHODS: Patients diagnosed with non-metastatic melanoma were selected. The questionnaire was translated and adapted to Spanish following international guidelines. The internal consistency, construct validity, and temporal stability of the questionnaire were analysed using Cronbach's alpha, confirmatory factor analysis, and test-retest reliability, respectively. Following this, the correlation between FCR scores and the study variables was evaluated. RESULTS: A total of 123 patients were included in the study. The translated and adapted questionnaire showed high reliability (overall Cronbach's alpha 0.834), temporal stability (intraclass correlation coefficient 0.8), and unidimensionality. The mean FCR score was 16.1 ± 6.7. The highest FCR scores were observed in women and young patients (p < 0.01). Patients with a personal history of cancer, facial melanoma, or skin graft reconstruction also obtained a high FCR score (p < 0.05). No differences were found between FCR and other tumour characteristics, such as the Breslow index or the time since diagnosis. CONCLUSIONS: This validated questionnaire is suitable for evaluating FCR. We also identified factors that tend to increase FCR scores, thus allowing clinicians to identify patients at risk and start preventive measures.

Protocol for the implementation of a stepped-care model to address fear of cancer recurrence in patients previously diagnosed with early-stage (0-II) melanoma.

INTRODUCTION: Fear of cancer recurrence (FCR) is commonly reported by patients diagnosed with early-stage (0-II) melanoma and can have a significant impact on daily functioning. This study will pilot the implementation of the Melanoma Care Program, an evidence-based, psychological intervention to reduce FCR, into routine practice, using a stepped-care model. METHODS AND ANALYSIS: Intervention effectiveness and level of implementation will be investigated using a hybrid type I design. Between 4 weeks before and 1 week after their next dermatological appointment, patients with melanoma will be invited to complete the Fear of Cancer Recurrence Inventory Short-Form, measuring self-reported FCR severity. Using a stepped-care model, clinical cut-off points will guide the level of support offered to patients. This includes: (1) usual care, (2) Melanoma: Questions and Answers psychoeducational booklet, and (3) three or five psychotherapeutic telehealth sessions. This longitudinal, mixed-methods pilot implementation study aims to recruit 108 patients previously diagnosed with stage 0-II melanoma. The primary effectiveness outcome is change in FCR severity over time. Secondary effectiveness outcomes include change in anxiety, depression, stress, health-related quality of life and melanoma-related knowledge over time. All outcomes are measured at baseline, within 1 week of the final telehealth session, and 6 and 12 months post-intervention. Implementation stakeholders at each study site and interested patients will provide feedback on intervention acceptability and appropriateness. Implementation stakeholders will also provide feedback on intervention cost, feasibility, fidelity and sustainability. These outcomes will be measured throughout implementation, using questionnaires and semistructured interviews/expert group discussions. Descriptive statistics, linear mixed-effects regression and thematic analysis will be used to analyse study data. ETHICS AND DISSEMINATION: Ethics approval was granted by the Sydney Local Health District-Royal Prince Alfred Zone (2020/ETH02518), protocol number: X20-0495. Results will be disseminated through peer-reviewed journals, conference presentations, social media and result summaries distributed to interested participants. TRIAL REGISTRATION DETAILS: (ACTRN12621000145808).

Perception of information to Swedish melanoma patients in routine clinical practice - a cross-sectional survey.

BACKGROUND: Comprehensible, relevant information empowers patients, allowing them to take an active part in their care. We aim to investigate how Swedish melanoma patients perceive information provided in routine clinical practice and explore the correlation between satisfaction with information, symptoms and functioning scales, and quality of life. METHODS: A cross-sectional study where EORTC QLQ-C30, EORTC QLQ-INFO25 and EQ-5D-3L questionnaires were sent to 1213 patients by post and 792 responded (65%). RESULTS: Only 0.5% reported that they wished to have received less information. The amount of information received and the satisfaction with that information was age-dependent, where older patients reported receiving less information than younger patients. Middle-aged patients were more satisfied with the information compared to both younger and older patients. The perception of having received sufficient information correlated negatively with anxiety. Higher satisfaction with the information also correlated positively with scores for functioning scales and negatively with degree of symptoms. No difference was perceived in information levels between disease stage apart from the scale "information about other services", where patients with more severe disease reported receiving more information. Men and women reported equal satisfaction concerning the information received. CONCLUSIONS: Patients lack sufficient information and age affects the perception of it. It is of utmost importance to tailor the information to suit the individual needs of a given patient, as satisfaction with the information received correlates with the patient's well-being.

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.

Health-related quality of life using the FACT-M questionnaire in patients with malignant melanoma: A systematic review.

BACKGROUND: Since there are no formal definition of health-related quality of life (HRQOL) there may be a lack of coherence and understanding of how to interpret HRQOL-data. The aim of this study is to summarize HRQOL-results that have used the FACT-M questionnaire in patients with melanoma, and specifically to summarize FACT-M between tumor stage. METHODS: This review was conducted in accordance with the PRISMA guidelines. INCLUSION CRITERIA: original studies on cutaneous melanoma between 2005 and 2020, written in English, containing "Functional Assessment of Cancer Therapy Melanoma" OR "Functional Assessment of Cancer Therapy M" OR FACT-M OR FACT/M OR FACTM OR "FACT M" OR FACT-melanoma OR "FACT Melanoma" together with FACT-M numbered data and basic patient characteristics, using the databases Scopus, Web of Science, PubMed and PsycINFO. RESULTS: 16 articles describing 14 patient cohorts published 2008-2020 were included. The majority of the studies did not report subscale scores in accordance with FACT-M guidelines. The results did indicate that FACT-M total scores were inversely correlated with AJCC stage. Subscale analysis demonstrated varying degrees of correlation with AJCC stage. The Melanoma Surgery Subscale score was lowest in stage III patients, probably reflecting more advanced surgical procedures in this group of patients. CONCLUSIONS: Though this review is based on a questionnaire limited to the assessment of melanoma patients, it highlights the universal need for clinical studies to describe their selected HRQOL-questionnaires, its definition of HRQOL and its dimensions, as well as comply with the questionnaire's guidelines when reporting HRQOL-data.

Exploring the implications of the first COVID-19 lockdown on patients with melanoma: a national survey.

The impact of the COVID-19 pandemic upon care of malignant melanoma (MM) remains as yet poorly understood. We undertook a UK-wide national survey, in conjunction with a patient support group (Melanoma UK), to explore patient perceptions of the impact of the pandemic upon treatment and outpatient care of their MM. Our findings suggest that following the onset of COVID-19, a significant minority of treatments and appointments have been delayed, there has been a shift from face-to-face to virtual outpatient consultations and there may be a rise in psychological comorbidities in patients with MM. We would urge clinicians to consider mental health interventions as part of a holistic care package.