Exploring the role of cancer fatalism and engagement with skin cancer genetic information in diverse primary care patients.

OBJECTIVE: To broaden the currently limited reach of genomic innovations, research is needed to understand how psychosocial and cultural factors influence reactions to genetic testing in diverse subgroups. Cancer fatalism is important in cancer prevention and deserves theoretical and empirical attention in the context of genomics and behavior change. METHODS: The current study employed data from a randomized controlled trial (N = 593) offering skin cancer genetic testing (using the melanocortin-1 receptor [MC1R] gene) in primary care in Albuquerque, New Mexico, USA. We examined interrelations of cancer fatalism with demographics, general health beliefs, perceived risk, perceived control, sun protection and skin screening behaviors and cancer worry in the skin cancer context stratified across Hispanic versus non-Hispanic ethnicity, and examined cancer fatalism as a moderator of intervention effects on study primary outcomes, including 3-month sun protection, cancer worry and perceived risk. RESULTS: Cancer fatalism was significantly related to the perception of control over skin cancer risk behaviors (ps ≤ 0.01) and demographics (ethnicity, education, health literacy; ps < 0.05), but not consistently related to general health beliefs or risk perception. Cancer fatalism did not moderate intervention effects on primary outcomes, except those with higher cancer fatalism randomized to intervention had higher levels of 3-month cancer worry (p = 0.019). CONCLUSIONS: These findings will guide future work considering the role of cancer fatalism in use of genomic technologies in the general population. This work anticipates strategies required to address cancer fatalism as translational genomics becomes more commonly available to diverse general population subgroups.

Five paediatric patients with mycosis fungoides and our approach to provide age-appropriate information and psychological support.

Cutaneous lymphoproliferative diseases in childhood are rare and they are clinically and pathologically heterogeneous, which makes their diagnosis challenging. Although there is limited long-term data and guidance on management, evidence suggests these to be different conditions from cutaneous lymphoma in adults, highlighting the need for age-appropriate patient information. We present clinical outcomes for our paediatric cohort of five patients with mycosis fungoides, emphasizing that despite diagnostic delays, mycosis fungoides in this age group tends to yield a good prognosis. It remains uncommon to provide clinical expertise together with psychological support in a dermatology paediatric service. Here, we provide our experience in offering this combined service. In conjunction with these patients, we have co-produced an accessible patient information leaflet targeted at a younger audience for support and to clarify potential misconceptions from a diagnosis of cutaneous lymphoma.

Health-related quality of life and its influencing factors in patients with primary cutaneous B-cell lymphomas: A multicentric study in 100 patients.

BACKGROUND: Primary cutaneous B-cell lymphomas (CBCL) are a group of rare malignant skin diseases that represent approximately 20%-30% of all primary cutaneous lymphomas (PCL). Previous studies revealed impaired health-related quality of life (HRQoL) in patients diagnosed with primary cutaneous T-cell lymphoma (CTCL). Currently, only small-sized studies investigated HRQoL in CBCL patients and lacked detailed analysis of respective subtypes. OBJECTIVES: This study aims to investigate HRQoL in CBCL patients to identify independent factors of HRQoL impairment in CBCL patients. METHODS: One hundred CBCL patients were recruited from eight German PCL centres in this multicentric, cross-sectional study from 2021 to 2022. The patients completed the dermatologic HRQoL questionnaire Skindex-29 and an investigator-designed 'CBCL-Questionnaire' with additional questions on HRQoL and clinical characteristics. RESULTS: The Skindex-29 revealed that HRQoL in CBCL patients is impaired on a mild to moderate level. The multiple regression analysis identified parameters like worries about dying, feeling prejudiced/discriminated and impairment of daily activities to be independently associated with impairment of HRQoL. Highest scores for HRQoL impairment were found in patients with primary cutaneous follicle centre lymphoma while on rituximab treatment and in patients with primary cutaneous marginal zone lymphoma while on watchful waiting. CONCLUSIONS: HRQoL is impaired in CBCL patients, even though, in the face of indolent disease course and favourable prognosis in the majority of cases. Of note, our investigator-designed tool identified worries about dying, feeling prejudiced/discriminated, and the type of treatment to have a negative impact on patients' HRQoL. Our study highlights the importance of a thorough patient-doctor communication to capture overall disease burden because generic HRQoL tools might lack of disease-specific items.

Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey.

BACKGROUND/AIMS: Individuals with neurofibromatosis, including neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2)-related schwannomatosis (SWN), and other forms of SWN, often experience disease manifestations and mental health difficulties for which psychosocial interventions may help. An anonymous online survey of adults with neurofibromatosis assessed their physical, social, and emotional well-being and preferences about psychosocial interventions to inform clinical trial design. METHODS: Neurofibromatosis clinical researchers and patient representatives from the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration developed the survey. Eligibility criteria included age ≥ 18 years, self-reported diagnosis of NF1, NF2, or SWN, and ability to read and understand English. The online survey was distributed internationally by the Neurofibromatosis Registry and other neurofibromatosis foundations from June to August 2020. RESULTS: Surveys were completed by 630 adults (18-81 years of age; M = 45.5) with NF1 (78%), NF2 (14%), and SWN (8%) who were mostly White, not Hispanic/Latino, female, and from the United States. The majority (91%) reported that their neurofibromatosis symptoms had at least some impact on daily life. In the total sample, 51% endorsed a mental health diagnosis, and 27% without a diagnosis believed they had an undiagnosed mental health condition. Participants indicated that neurofibromatosis affected their emotional (44%), physical (38%), and social (35%) functioning to a high degree. Few reported ever having participated in a drug (6%) or psychosocial (7%) clinical trial, yet 68% reported they "probably" or "definitely" would want to participate in a psychosocial trial if it targeted a relevant concern. Top treatment targets were anxiety, healthier lifestyle, and daily stress. Top barriers to participating in psychosocial trials were distance to clinic, costs, and time commitment. Respondents preferred interventions delivered by clinicians via individual sessions or a combination of group and individual sessions, with limited in-person and mostly remote participation. There were no significant group differences by neurofibromatosis type in willingness to participate in psychosocial trials (p = 0.27). Regarding interest in intervention targets, adults with SWN were more likely to prefer psychosocial trials for pain support compared to those with NF1 (p < 0.001) and NF2 (p < 0.001). CONCLUSION: This study conducted the largest survey assessing physical symptoms, mental health needs, and preferences for psychosocial trials in adults with neurofibromatosis. Results indicate a high prevalence of disease manifestations, psychosocial difficulties, and untreated mental health problems in adults with neurofibromatosis and a high degree of willingness to participate in psychosocial clinical trials. Patient preferences should be considered when designing and implementing psychosocial interventions to develop the most feasible and meaningful studies.

Evaluating Predictors of Patient Satisfaction With Facial Appearance After Mohs Micrographic Surgery Using the FACE-Q.

BACKGROUND: Although patient satisfaction with reconstructive outcomes after facial skin cancer resection is an important consideration in Mohs surgery, there is limited information evaluating this concern using validated patient-reported outcome tools. OBJECTIVE: To characterize predictors that may be associated with increased postoperative patient satisfaction with facial appearance after Mohs surgery using the FACE-Q/Skin Cancer survey, a patient-reported outcome tool that has been validated in various studies. METHODS: A total of 202 patients who underwent Mohs surgery for facial skin cancer at the Brigham and Women's Faulkner Hospital between April 2017 and November 2021 were included after completing the postoperative Satisfaction with Facial Appearance scale (FACE-Q scale). RESULTS: Male patients were significantly more likely to have higher satisfaction scores compared with female patients (aOR 2.4, 95% CI 1.1-5.1). Increased preoperative facial satisfaction scores was directly correlated with increased postoperative facial satisfaction scores ( p < .01). Patients with tumors on the lower face/neck (aOR 3.88; 95% CI 1.4-10.7) had significantly greater satisfaction scores compared with those with tumors on their nose/nasolabial folds. CONCLUSION: Potential interventions and counseling methods can be tailored toward specific patient populations with lower satisfaction scores to increase their overall satisfaction with reconstructive outcomes.

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.

Appearance-related psychosocial distress after facial non-melanoma skin cancer surgery: A 1-year prospective study.

OBJECTIVE: Patients undergoing Mohs Micrographic Surgery (MMS) for facial non-melanoma skin cancer (NMSC) experience appearance-related psychosocial distress due to its post-surgical esthetic changes. However, little is known about its development over a longer follow-up period. This study prospectively assessed appearance-related psychosocial distress in patients undergoing MMS for facial NMSC over a 1-year follow up period. METHODS: Patients who had MMS for facial NMSC between September 2020 and October 2021 were invited to answer the FACE-Q Skin Cancer - appearance-related psychosocial distress scale preoperatively, 2 weeks, 6 months, and 1 year after surgery. RESULTS: A total of 217 patients completed the questionnaire at baseline. In addition, 158 (72.8%), 139 (64.1%), and 120 (55.3%) questionnaires were successfully answered 2 weeks, 6 months, and 1 year after surgery, respectively. Patients with a peripheral lesion presented higher appearance-related psychosocial distress scores at baseline than patients with a central lesion (p = 0.02). There was a decreasing trend in appearance-related psychosocial distress over time, but without a significant result (baseline-2-week; p = 0.73, 2-week-6-month; p = 0.80, 6-month-1-year; p = 0.17, baseline-1-year; p = 0.23). Patients with secondary intention healing and graft reconstruction methods experienced more appearance-related psychosocial distress over time than patients with primary wound closures (p = 0.03). CONCLUSIONS: Patients still experience appearance-related psychosocial distress 1 year after MMS. These patients may benefit from targeted counseling. Additionally, predictors of more appearance-related psychosocial distress, such as secondary intention healing and graft reconstruction methods, may benefit from additional psychological care.

Financial toxicity and skin cancer care in the US: population-based survey from 2011 to 2018.

This cross-sectional study aimed to examine financial toxicity among people with skin cancer using pooled National Health Interview Survey data from adults in 2011-2018. Material, behavioral, and psychological markers of financial toxicity were compared by lifetime skin cancer history (any melanoma, any skin cancer beside melanoma, and no skin cancer) using multivariable logistic regression models. Of 257,652 total participants, 1874 (0.73%) had known melanoma and 7073 (2.75%) had any skin cancer beside melanoma. History of skin cancers was not independently associated with increased markers of financial toxicity after adjustment for sociodemographic and medical co-morbidities.

Non-linear effects of absolute risk information on individuals'self-evaluation, affective responses, and behavioral intentionsof precautionary actions against skin cancer.

OBJECTIVE: The current study explores non-linear effects of absolute risk and effects of comparative risk information about skin cancer on individuals' safety ratings, affective responses and behavioral intentions. METHOD: An experimental survey was conducted among college students (N = 563) to test the effects of absolute and comparative risk information across a range of risk levels from 3.7% to 60%. RESULTS: The non-linear model of absolute risk effect was confirmed by the data. Absolute risk information had detectable effects at low levels of risk, but the effects did not change appreciably at the highest absolute risk levels. Regarding comparative risk, the data did not support its effects on individuals' safety ratings, affective responses and behavioral intentions. CONCLUSION: The study found the non-linear model fits well to the skin cancer related feelings and behavioral intentions. It suggests future research apply non-linear models to a variety of health communication areas.

Factors Affecting Knowledge Levels and Protective Behaviors to Prevent the Development of Skin Cancer in Organ Transplant Recipients as a High-Risk Group.

OBJECTIVES: Organ transplantrecipients are at high risk of skin cancer due to immunosuppressant therapy. This study investigated the factors affecting organ transplant recipients' knowledge and protective behaviors to prevent the development of skin cancer. MATERIALS AND METHODS: This was a cross-sectional descriptive study of kidney (n = 82) and liver (n = 31) transplant recipients seen at our hospitals in Turkey from June 2019 to February 2020. A sociodemographic and clinical characteristics form, the Skin Cancer and Sun Knowledge scale, the Sun Protection Behavior questionnaire, and the General Self-Efficacy scale were used to collect data. RESULTS: The mean age of organ transplant recipients was 46.63 ± 13.24 years. Self-efficacy and awareness that transplant increases the risk of skin cancer are 2 characteristics that affected the participants' knowledge level. The type of graft (kidney) affected participants' behavior in avoiding outdoor exposure between the hours of 10 am and 4 pm. Green/blue eye color and self-efficacy affected the participants' hatwearing behavior. These details showed that, as the patients' sensitivity and self-efficacy increased, their levels of knowledge and sun protection behaviors were positively affected. CONCLUSIONS: The knowledge level of patients was affected by (1) awareness that transplant is associated with an increased risk of skin cancer and (2) high levels of self-efficacy. We observed that (1) organ transplant recipients with high self-efficacy and kidney transplant recipients were more likely to avoid outdoor exposure between 10 am and 4 pm and that (2) organ transplant recipients with green/blue eyes and high levels of selfefficacy were more likely to wear a hat when outdoors. Organ transplant teams should provide education and counseling about skin cancer and sun protection in the follow-up care of transplant recipients.

Skin Cancer Behavioral Risk Factors and Screening Among U.S. Adults in Same-Sex Relationships: A Population-Based Study from 2000 to 2015.

Purpose: Skin cancer is prevalent in sexual minority men but little is known about risk factors and screening specifically among couples in same-sex relationships (SSR). We aimed to compare sunburns, sun-protective behaviors, indoor tanning, and total body skin examinations (TBSEs) between people in SSR with those in opposite-sex relationships (OSR). Methods: We conducted a pooled cross-sectional analysis of 2000-2015 data from the National Health Interview Survey, a nationally representative survey of the United States civilian population. Results: Of 102,365 adults with a spouse or married partner, 448 (0.4%) were men in SSR, 48,312 (48.1%) men in OSR, 497 (0.5%) women in SSR, and 53,108 women in OSR (51.9%). Men in SSR were more likely than men in OSR to seek shade (adjusted odds ratio [aOR] = 1.41; 95% confidence interval [CI] = 1.07-1.85), tan indoors (aOR = 3.71; 95% CI = 2.38-5.78), and receive any TBSE (aOR = 2.45; 95% CI = 1.69-3.54) after adjusting for sociodemographic factors, health insurance status, and health behaviors. Men in SSR were less likely than men in OSR to wear long pants (aOR = 0.63; 95% CI = 0.46-0.85) and caps or visors (aOR = 0.50; 95% CI = 0.36-0.69). No differences in sunburns, sun-protective behaviors, indoor tanning, and TBSE between women in SSR and OSR were observed after multivariable adjustment. Conclusion: Patterns of sun-protective behaviors and indoor tanning among men in SSR, compared with men in OSR, demonstrate modifiable behaviors that may mitigate skin cancer risk. Dyadic counseling and public health interventions geared toward men in SSR may promote sun-protective behaviors and reduce indoor tanning.

Cognition/Psychological Burden and Resilience in Cutaneous T-Cell Lymphoma and Psoriasis Patients: Real-Life Data and Implications for the Treatment.

Background: Psoriasis and cutaneous T-cell lymphoma (CTCL) expose patients to chronic inflammation as well as physical and psychological disabilities, but the impact of such alterations on cognitive function is unknown. Objective: This study is aimed at determining if CTCL and psoriasis impact cognitive functioning in relation to psychological and health-related quality of life (HR-QOL) status. Methods: A cross-sectional study was performed in an outpatient dermatology clinic of a university teaching hospital. Thirty-nine subjects with CTCL (N = 20) or psoriasis (N = 19) who met eligibility criteria were included. The cognitive domains of memory, attention and processing speed, and executive function were assessed with standard neuropsychological tests. Subjects were assessed for depression, anxiety, and HR-QOL (using the SKINDEX-29 questionnaire). Results: Study participants were CTCL and psoriasis subjects; cognitive impairment was found in the domain of memory in 17.9% subjects with CTCL or psoriasis. Lower scores on executive function tests were predicted by higher (worse HR-QOL) SKINDEX-29 functioning scores (p = 0.01). A higher estimated baseline intellectual functioning predicted lower scores (better HR-QOL) on the symptoms and functioning domains of SKINDEX-29 (p = 0.01 and 0.02, respectively) and a statistical trend (p = 0.07) for the emotion domain. Memory and acute anxiety were adversely impacted by shorter disease duration (p = 0.01 for both). Conclusions: Memory impairment may be associated comorbidity in CTCL and psoriasis. Subjects with stronger cognitive resources appear to cope better with health-related quality of life (HR-QOL) challenges.

Validation of the psychometric properties of a "Modified Version of the Hornheider Screening Instrument" (HSI-MV) using a sample of outpatient and inpatient skin tumor patients.

BACKGROUND: The basis for adequate psycho-oncological care is the identification of patients with psychosocial support needs. The German Working Group for Psychooncology also recommends the Hornheider Screening Instrument (HSI) for this purpose. The question, "Is anyone in your family particularly burdened by the hospital stay?" is intended to capture disease-related family stress. But is this item equally suitable for outpatients and inpatients? The study objective was to examine how replacing the original item affects the test performance of this modified version of the HSI and the frequency of psychosocial stress. PATIENTS AND METHODS: 92 outpatients and 98 inpatients with skin tumors assessed their psychosocial situation using different questionnaires. RESULTS: Compared to inpatients, less than half as many outpatients answered the item in the affirmative. If the question was replaced by: "Is someone in your family particularly burdened by your disease or the course of the disease?" this setting-related difference did not arise. The "Alternative item" and the "Modified version of the HIS" (HSI-MV) proved to be superior to the original item and the original HSI with regard to all examined criteria. CONCLUSIONS: The HSI-MV can be used as a reliable and valid instrument for the systematic assessment of psychosocial care needs in outpatient and inpatient settings. Depending on care capacity, a threshold of ≥ 5 or ≥ 4 is appropriate. In addition to screening, the desire for support should be enquired.

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).

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Cutaneous T Cell Lymphoma.

Cutaneous T cell lymphoma and its subtypes, mycosis fungoides (MF) and Sézary syndrome (SS), comprise a spectrum of chronic lymphoproliferative disorders in which neoplastic T cells accumulate within the skin and visceral organs. This process is frequently characterized by severe pain, nonpain symptoms, and physical disfigurement. Significant emotional, spiritual, and existential distress is also felt by many of these patients as they experience a chronic, often incurable disease. Patients suffering from these diseases, though not commonly encountered, can benefit greatly from palliative care support. In this article, a team of palliative care clinicians, critical care physicians, and an oncologist specializing in lymphoma offer 10 tips to help palliative care teams to support these vulnerable and often-distressed patients and their caregivers.

Quality of Life During Treatment for Cervicofacial Non-melanoma Skin Cancer.

Non-melanoma skin cancer (NMSC), despite its low mortality, can impose a significant psychological burden on patients. The aim of the present study is to examine the evolution of the quality of life (QOL) in patients with cervicofacial NMSC during treatment. This prospective cohort study was conducted to a group of patients with cervicofacial NMSC, confirmed by skin biopsy. These patients completed the Skin Cancer Index questionnaire at the time of diagnosis and at 1 week, 1 month and 6 months after treatment began. Data for these patients' demographic characteristics and variables related to the type of tumour, the treatment received and the evolution of the condition were recorded. The study group was composed of 220 patients. At the time of diagnosis, the overall mean score for QOL was 54.1 (SD 21.9); for the social appearance component, it was 76.7 (SD 26.2), and for the emotional component, it was 23 (SD 25.1). Six months after treatment began, the overall mean score was 61 (SD19.1), that for social appearance, 85 (SD 20.6), and that for the emotional component, 27.4 (SD 26.6). All the differences were statistically significant (p < 0.05). The results obtained show that during the treatment period, it is at the time of diagnosis when patients with cervicofacial NMSC undergo the greatest deterioration in their QOL. In comparison with the findings obtained in previous studies, our population obtained lower overall scores in the questionnaires and less improvement during follow-up.

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.