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1.
Sci Rep ; 14(1): 21739, 2024 09 18.
Artigo em Inglês | MEDLINE | ID: mdl-39289416

RESUMO

Basal cell carcinoma (BCC) is the most frequent malignant tumour worldwide and incidences are rising rapidly. BCC grow locally, but can invade surrounding tissues. Little is known concerning their impact on the health-related quality of life (HrQoL), and limited available data reports contradicting results. Measuring HrQoL in BCC patients should be done using disease-specific questionnaires such as the Basal and Squamous cell carcinoma Quality of Life (BaSQoL) questionnaire. The aim of this study was to assess the BCC-related HrQoL by examining all relevant patient, tumour and treatment characteristics to identify the main factors for the BCC-related impact. Specific attention for older BCC patients wass brought forward because of the often complex decisions in this subgroup. Patients ≥ 18 years with a history of BCC were asked to fill in the BaSQoL questionnaire, consisting of 5 subdomains. Multivariable analyses were done using a generalized additive model (GAM) because of the need for incorporation of non-linear functions. The study obtained approval of the Ethics Committee of the Ghent University Hospital (EC/2019/1352). Informed consent was obtained from all subjects. All experiments were performed in accordance with relevant guidelines and regulations. Four hundred patients with a median age of 66 were enrolled. Mean BaSQoL subscores were 0.78 (SD 0.63) for 'behaviour', 1.01 (SD 0.73) for 'diagnosis&treatment', 0.90 (SD 0.73) for 'worries', 0.40 (SD 0.63) for 'appearance' and 1.20 (SD 0.75) for 'other people', illustrating the low to moderate impact of BCC on the HrQoL. A GAM with subsequent ANOVA testing was done for all relevant variables. In 4 out of 5 BaSQoL subdomains 'age' showed a significant correlation ('behaviour' p = 0.007; 'diagnosis&treatment' p = 0.026; 'worries' p = 0.003; 'appearance' p = 0.008). Lower BaSQoL scores were seen in older patients, meaning less BCC-impact on their HrQoL. There was a clear non-linear correlation between BaSQoL scores and age, illustrating that the impact of BCC on the HrQoL shows a rapid decrease starting around the age of 70. This study is the first to illustrate the relation between the BCC-related HrQoL and the age of patients with the use of a disease-specific HrQoL instrument. We found a lower BaSQoL score in older adults, with a specific age group of interest starting around the age of 70-75. This is an argument for a potential wait-and-see strategy for BCC in these patients.


Assuntos
Carcinoma Basocelular , Qualidade de Vida , Neoplasias Cutâneas , Humanos , Carcinoma Basocelular/psicologia , Carcinoma Basocelular/patologia , Idoso , Masculino , Feminino , Pessoa de Meia-Idade , Inquéritos e Questionários , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/patologia , Idoso de 80 Anos ou mais
2.
Cancer Med ; 13(14): e7360, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39031963

RESUMO

BACKGROUND: A phase 2 cemiplimab study (NCT03132636) demonstrated a 24.1% objective response rate in patients diagnosed with metastatic basal cell carcinoma (mBCC) who were not candidates for continued hedgehog inhibitor (HHI) therapy due to intolerance to previous HHI therapy, disease progression while receiving HHI therapy, or having not better than stable disease on HHI therapy after 9 months. Here, health-related quality of life (QoL) for this patient population is reported. METHODS: Adult patients with mBCC were treated with intravenous cemiplimab at a dose of 350 mg every 3 weeks for 5 treatment cycles of 9 weeks/cycle then 4 treatment cycles of 12 weeks/cycle. Patients completed the European Organisation for Research and Treatment of Cancer Quality of Life-Core 30 (QLQ-C30) and Skindex-16 questionnaires at baseline and Day 1 of each cycle. Across Cycles 2 to 9, the overall change from baseline was analyzed using a mixed model with repeated measures. Responder analyses determined clinically meaningful improvement or deterioration (changes ≥10 points) or maintenance across all scales. RESULTS: Patients reported low symptom burden and moderate-to-high functioning at baseline. Maintenance for QLQ-C30 global health status (GHS)/QoL and across all functioning and symptom scales was indicated by overall mean changes from baseline. Clinically meaningful improvement or maintenance was reported at Cycle 2 for GHS/QoL (77%), functioning scales (77% to 86%), and symptom scales (70% to 93%), with similar proportions of improvement or maintenance at Cycles 6 and 9, excluding fatigue. On the Skindex-16, clinically meaningful improvement or maintenance was reported across the emotional, symptom, and functional subscales, in 76%-88% of patients at Cycle 2, which were generally maintained at Cycles 6 and 9. Overall mean changes from baseline showed maintenance across these subscales. CONCLUSIONS: The majority of patients treated with cemiplimab reported improvement or maintenance in GHS/QoL and functioning while maintaining a low symptom burden.


Assuntos
Anticorpos Monoclonais Humanizados , Carcinoma Basocelular , Qualidade de Vida , Humanos , Anticorpos Monoclonais Humanizados/uso terapêutico , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Carcinoma Basocelular/tratamento farmacológico , Carcinoma Basocelular/psicologia , Carcinoma Basocelular/patologia , Neoplasias Cutâneas/tratamento farmacológico , Neoplasias Cutâneas/patologia , Neoplasias Cutâneas/psicologia , Adulto , Idoso de 80 Anos ou mais , Resultado do Tratamento , Antineoplásicos Imunológicos/uso terapêutico
3.
Sao Paulo Med J ; 142(6): e2024089, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39016383

RESUMO

BACKGROUND: Healthcare professionals' knowledge, attitudes, and beliefs regarding skin cancer are important for reducing the future impact of the disease. OBJECTIVE: This study evaluated university students' knowledge, attitudes, and beliefs about skin cancer and examined the variables influencing their attitudes and beliefs about the disease. DESIGN AND SETTING: This descriptive cross-sectional study was conducted at the Faculty of Health Sciences at Manisa Celal Bayar University, Manisa, Turkey. METHOD: A total of 960 students participated in this study. Data were collected using the Student Introduction Form, Fitzpatrick Skin Type Scale, Skin Cancer and Sun Knowledge Scale (SCSKS), and Health Belief Model Scale for Skin Cancer (HBMSSC). RESULTS: The mean SCSKS score of the participants was 14.91 ± 4.23. The mean HBSSC scores of the participants were 23.58 ± 7.79 for perceived susceptibility, 14.79 ± 4.59 for perceived severity, 20.64 ± 6.60 for perceived benefits, 15.93 ± 4.09 for perceived barriers, and 21.78 ± 7.14 for self-efficacy. The mean SCSKS total scores of the university students were significantly and positively correlated with the HBMSSC subdimensions. Gender explained 1.58 of the variance in perceived benefits and 1.65 of the variance in self-efficacy, whereas the SCSKS score explained most other variables. CONCLUSION: The students' knowledge of skin cancer and sun protection was moderate. Their attitudes and beliefs regarding skin cancer were unexpected. This study identified students' knowledge of skin cancer and sun protection as the most important variables for improving their attitudes and beliefs about skin cancer.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Neoplasias Cutâneas , Humanos , Estudos Transversais , Masculino , Turquia , Feminino , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/prevenção & controle , Adulto Jovem , Adulto , Inquéritos e Questionários , Adolescente , Estudantes/psicologia , Universidades , Estudantes de Ciências da Saúde/psicologia , Estudantes de Ciências da Saúde/estatística & dados numéricos
4.
Eur J Cancer ; 207: 114176, 2024 08.
Artigo em Inglês | MEDLINE | ID: mdl-38875843

RESUMO

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.


Assuntos
Melanoma , Qualidade de Vida , Humanos , Melanoma/psicologia , Melanoma/patologia , Masculino , Feminino , Inquéritos e Questionários , Pessoa de Meia-Idade , Idoso , Inibidores de Checkpoint Imunológico/uso terapêutico , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/patologia , Adulto
5.
J Dermatol ; 51(8): 1050-1059, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38923593

RESUMO

The skin manifestations of neurofibromatosis 1 significantly reduce health-related quality-of-life. However, data on the utility of existing surveys in capturing neurofibromatosis 1 skin treatment outcomes are lacking. This quantitative study examined the relationship between clinician-rated severity and visibility and patient-rated itch and quality-of-life (QoL) to (1) establish baseline levels of skin- and condition-specific-related QoL, itch, depression and anxiety; (2) identify patient concerns to inform the development and evaluation of skin interventions; and (3) compare the sensitivity of different QoL measures. Validated scales included Skindex-29, Dermatology Life Quality Index (DLQI), Neurofibromatosis 1-adult quality-of-life (NF1-AdQOL) questionnaire, and the Hospital Anxiety and Depression Scale (HADS). We recruited 100 participants (response rate: 95%). Of these, 42% reported itch and 23% had probable clinical anxiety. Our cohort had higher levels of anxiety and total HADS scores compared to a control population. Using multivariate regression analysis, increasing visibility significantly predicted poorer QoL using the Skindex-29, NF1-AdQOL, and DLQI (p < 0.05); and itch significantly predicted worse QoL in Skindex-29 and NF1-AdQOL (p < 0.05). The highest mean scoring questions in Skindex-29 and NF1-AdQOL concerned worry about worsening skin disease and embarrassment. The highest mean scoring questions in DLQI were regarding itch, pain, and embarrassment. Items asking specifically about cutaneous neurofibromas (cNF) scored higher than comparable skin-specific questions (t-test p value <0.05). In summary, this study provides insights into the factors contributing to impaired QoL, anxiety, and mood in NF1 patients with cutaneous neurofibromas. Key factors identified for use in cNF measures include visibility, itch, anxiety, embarrassment, fears of worsening skin disease, and cNF-specific questions.


Assuntos
Ansiedade , Saúde Mental , Neurofibromatose 1 , Prurido , Qualidade de Vida , Neoplasias Cutâneas , Humanos , Neurofibromatose 1/psicologia , Neurofibromatose 1/complicações , Neurofibromatose 1/diagnóstico , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Ansiedade/etiologia , Ansiedade/psicologia , Ansiedade/diagnóstico , Prurido/psicologia , Prurido/etiologia , Prurido/diagnóstico , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/patologia , Neoplasias Cutâneas/diagnóstico , Inquéritos e Questionários , Depressão/etiologia , Depressão/psicologia , Depressão/diagnóstico , Índice de Gravidade de Doença , Adulto Jovem , Idoso , Adolescente , Neurofibroma/psicologia , Neurofibroma/diagnóstico
6.
Psychooncology ; 33(5): e6343, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38697780

RESUMO

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.


Assuntos
Acontecimentos que Mudam a Vida , Melanoma , Neoplasias Cutâneas , Estresse Psicológico , Humanos , Feminino , Masculino , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/psicologia , Pessoa de Meia-Idade , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia , Melanoma/epidemiologia , Melanoma/psicologia , Estudos Retrospectivos , Adulto , Idoso , Inquéritos e Questionários , Incidência , Fatores de Risco , Adaptação Psicológica , Experiências Adversas da Infância/estatística & dados numéricos
7.
Ann Work Expo Health ; 68(6): 636-646, 2024 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-38742833

RESUMO

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.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Pesquisa Qualitativa , Neoplasias Cutâneas , Humanos , Feminino , Masculino , Neoplasias Cutâneas/prevenção & controle , Neoplasias Cutâneas/psicologia , Pessoa de Meia-Idade , Adulto , Idoso , Kentucky , Indiana , Protetores Solares/uso terapêutico , Autoexame , Melanoma/prevenção & controle , Melanoma/psicologia , Exposição Ocupacional/prevenção & controle , Percepção
8.
Clin Exp Dermatol ; 49(10): 1205-1212, 2024 Sep 18.
Artigo em Inglês | MEDLINE | ID: mdl-38747386

RESUMO

BACKGROUND: For patients with high-risk cutaneous squamous cell carcinomas (cSCCs), current guidance suggests we should offer post-treatment follow-up appointments at regular intervals for 24 months. Is this to improve prognosis, provide psychological support or find the next cancer? Recent data confirm that recurrence and metastasis are rarer events, and that perhaps these intense follow-up schedules do not really lead to improved health outcomes. OBJECTIVES: To question whether current follow-up practices are truly needed by introducing an option of patient-initiated follow-up (PIFU). METHODS: We enrolled 476 patients with cSCC (January 2020-January 2023) who fulfilled the definition of high-risk cSCC based on guidelines in use at the time. Of the total, 59 did not fulful the inclusion criteria and were excluded; 250 (52.5%) did not recontact us during the 2-year period, with no clinical record of complications or recurrences; and 167 (35.1%) utilized the PIFU pathway, of which 119 patients required only one face-to-face appointment. Seven patients (1.5%) developed metastatic disease, 11 (2.3%) developed recurrence and 68 (14.3%) developed cSCC at another site. All lesions were identified by the patient via PIFU. We saved 1250 follow-up appointments from those who did not contact us (n = 250), financially equating to £181 462.50. CONCLUSIONS: Our data imply that PIFU can be considered safe alternative practice for patients with cSCC. Patients independently identified the need for review without scheduled follow-up, making these appointments available to other patient cohorts. Although follow-up appointments may provide mental health support, they can be inconvenient and not the ideal use of our healthcare resources. Our findings support a call for revision of existing skin cancer health policies to cope with and subsequently improve our practices for better patient care.


Assuntos
Carcinoma de Células Escamosas , Recidiva Local de Neoplasia , Neoplasias Cutâneas , Humanos , Neoplasias Cutâneas/terapia , Neoplasias Cutâneas/patologia , Neoplasias Cutâneas/psicologia , Carcinoma de Células Escamosas/terapia , Carcinoma de Células Escamosas/patologia , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , Seguimentos , Idoso de 80 Anos ou mais , Assistência ao Convalescente , Agendamento de Consultas , Adulto
9.
Dermatologie (Heidelb) ; 75(8): 629-639, 2024 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-38720135

RESUMO

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.


Assuntos
Neoplasias Cutâneas , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/terapia , Neoplasias Cutâneas/diagnóstico , Idoso , Adulto , Angústia Psicológica , Estresse Psicológico/diagnóstico , Estresse Psicológico/terapia , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia , Programas de Rastreamento , Aconselhamento , Alemanha , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Inquéritos e Questionários , Melanoma/psicologia , Melanoma/terapia , Melanoma/diagnóstico , Idoso de 80 Anos ou mais , Institutos de Câncer
10.
J Patient Rep Outcomes ; 8(1): 52, 2024 May 29.
Artigo em Inglês | MEDLINE | ID: mdl-38811427

RESUMO

BACKGROUND: Almost all patients with Neurofibromatosis type 1 (NF1) develop cutaneous neurofibroma (cNF), benign dermal tumours that have a large impact on the patient's Quality of Life (QoL). The French cNF-Skindex is the first questionnaire to specifically assess cNF-related QoL in patients with NF1. We aimed to adapt and validate a Dutch version of the cNF-Skindex. METHODS: The questionnaire was translated using forward and backwards translation, and subsequently administered to a sample of 59 patients on two separate occasions. Feasibility was evaluated by the presence of floor/ceiling effects. Reliability was assessed by evaluating internal consistency and test-retest reliability, by calculating Cronbach's alpha and Spearman's rank correlation coefficients. The EQ-5D-5L and SF-36 were used to evaluate convergent validity, using Spearman's rank correlation coefficients. An exploratory factor analysis was performed to study the data's internal structure. Multivariable linear regression was used to model the relationship between patient characteristics and the cNF-Skindex. RESULTS: The Dutch cNF-Skindex demonstrated excellent feasibility and reliability (Cronbach's alpha 0.96, test-retest correlation coefficient 0.88). Convergent validity was confirmed for the EQ-5D-5L and relevant SF-36 scales. All items and subdomains from the original questionnaire were confirmed following exploratory factor analysis. The patient characteristics included in the multivariable linear regression were not significantly associated with the cNF-Skindex score. CONCLUSIONS: The Dutch cNF-Skindex displayed excellent psychometric properties, enabling use in the Netherlands.


Assuntos
Neurofibroma , Neurofibromatose 1 , Qualidade de Vida , Neoplasias Cutâneas , Humanos , Qualidade de Vida/psicologia , Neurofibromatose 1/psicologia , Masculino , Feminino , Adulto , Países Baixos , Reprodutibilidade dos Testes , Neoplasias Cutâneas/psicologia , Inquéritos e Questionários , Pessoa de Meia-Idade , Neurofibroma/psicologia , Psicometria/métodos , Psicometria/instrumentação , Adulto Jovem , Adolescente
12.
Psychooncology ; 33(4): e6331, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38546209

RESUMO

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.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Neoplasias Cutâneas , Humanos , Neoplasias Cutâneas/genética , Neoplasias Cutâneas/prevenção & controle , Neoplasias Cutâneas/psicologia , Hispânico ou Latino/psicologia , Testes Genéticos , Atenção Primária à Saúde
13.
JAMA Dermatol ; 160(5): 495-501, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38353983

RESUMO

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.


Assuntos
Sobreviventes de Câncer , Medo , Melanoma , Recidiva Local de Neoplasia , Neoplasias Cutâneas , Humanos , Melanoma/psicologia , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/patologia , Masculino , Feminino , Medo/psicologia , Recidiva Local de Neoplasia/psicologia , Recidiva Local de Neoplasia/epidemiologia , Pessoa de Meia-Idade , Sobreviventes de Câncer/psicologia , Adulto , Idoso , Inquéritos e Questionários , Pesquisa Qualitativa , Qualidade de Vida , Melanoma Maligno Cutâneo , Entrevistas como Assunto
15.
Clin Exp Dermatol ; 49(5): 497-501, 2024 Apr 23.
Artigo em Inglês | MEDLINE | ID: mdl-38169346

RESUMO

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.


Assuntos
Micose Fungoide , Neoplasias Cutâneas , Adolescente , Criança , Feminino , Humanos , Masculino , Fatores Etários , Micose Fungoide/psicologia , Micose Fungoide/terapia , Educação de Pacientes como Assunto , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/terapia , Adulto Jovem
16.
J Eur Acad Dermatol Venereol ; 38(5): 954-966, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38279594

RESUMO

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.


Assuntos
Linfoma de Células B , Qualidade de Vida , Neoplasias Cutâneas , Humanos , Masculino , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/patologia , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Idoso , Linfoma de Células B/psicologia , Adulto , Inquéritos e Questionários , Idoso de 80 Anos ou mais , Atividades Cotidianas
17.
Br J Dermatol ; 191(1): 24-35, 2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38197404

RESUMO

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.


Assuntos
Ansiedade , Depressão , Melanoma , Neoplasias Cutâneas , Humanos , Melanoma/epidemiologia , Melanoma/psicologia , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/psicologia , Prevalência , Depressão/epidemiologia , Ansiedade/epidemiologia , Fatores de Risco , Melanoma Maligno Cutâneo
18.
Clin Trials ; 21(1): 73-84, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-37962219

RESUMO

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.


Assuntos
Neurilemoma , Neurofibromatoses , Neurofibromatose 1 , Neurofibromatose 2 , Neoplasias Cutâneas , Adulto , Feminino , Humanos , Estados Unidos , Adolescente , Neurofibromatoses/terapia , Neurofibromatoses/diagnóstico , Neurofibromatoses/psicologia , Neurilemoma/diagnóstico , Neurilemoma/psicologia , Neurilemoma/terapia , Neoplasias Cutâneas/diagnóstico , Neoplasias Cutâneas/psicologia , Neoplasias Cutâneas/terapia , Neurofibromatose 2/diagnóstico , Neurofibromatose 2/psicologia , Neurofibromatose 2/terapia , Neurofibromatose 1/diagnóstico , Neurofibromatose 1/psicologia , Neurofibromatose 1/terapia , Inquéritos e Questionários
19.
Dermatol Surg ; 49(12): 1128-1130, 2023 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-37910643

RESUMO

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.


Assuntos
Neoplasias Faciais , Neoplasias Cutâneas , Humanos , Masculino , Feminino , Satisfação do Paciente , Cirurgia de Mohs , Neoplasias Cutâneas/cirurgia , Neoplasias Cutâneas/psicologia , Nariz/cirurgia , Neoplasias Faciais/cirurgia , Sulco Nasogeniano/cirurgia
20.
Contemp Clin Trials ; 131: 107276, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37393004

RESUMO

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.


Assuntos
Sobreviventes de Câncer , Melanoma , Neoplasias Cutâneas , Queimadura Solar , Humanos , Queimadura Solar/prevenção & controle , Queimadura Solar/tratamento farmacológico , Protetores Solares/uso terapêutico , Predisposição Genética para Doença , Melanoma/prevenção & controle , Melanoma/psicologia , Neoplasias Cutâneas/prevenção & controle , Neoplasias Cutâneas/psicologia , Comportamentos Relacionados com a Saúde , Estilo de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
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