Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 12 de 12
Filtrar
1.
J Cancer Educ ; 38(4): 1264-1270, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-36585570

RESUMEN

Skin cancer patients increasingly search the internet to acquire disease-related information. However, information on the internet may be misleading. Recently, SKINFO has been launched, a website exclusively created for German-speaking skin cancer patients providing information as well as additional resources of verified quality. Here, we describe the results of the first usability test of SKINFO using a mixed-methods approach. Ten adult patients with skin cancer were recruited for usability testing in the skin cancer units of the University Hospitals of Erlangen and Dresden, Germany. Testing consisted of three different scenarios where patients were asked to find specific information on the SKINFO website guided by the think-aloud method. Descriptive analysis and content analyses were performed. All patients would recommend SKINFO and appreciated its content, design, and structure. Think-aloud analysis identified the topics layout, navigation, and content and structure which would benefit from refinement. Major criticism included the navigation through the website, and the desire for more specific information addressing patients' relatives and the latest, up-to-date information. Overall, usability testing showed that the unique web-based information platform has the potential to support patients coping with skin cancer and thus strengthen informed decision-making.


Asunto(s)
Neoplasias Cutáneas , Interfaz Usuario-Computador , Adulto , Humanos , Diseño Centrado en el Usuario , Neoplasias Cutáneas/prevención & control , Alemania , Internet
2.
J Cancer Educ ; 34(4): 760-767, 2019 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-29736794

RESUMEN

Booklets are the preferably used form among patient education materials and are often handed out during medical consultations in dermatological oncology settings. However, little is known about how beneficial they are and whether they correspond to essential quality characteristics. To assess the quality, readability, and understandability of currently freely available booklets written in German addressing melanoma patients (MP). Melanoma booklets in accordance with predefined criteria were searched and analyzed. Three reviewers independently assessed their quality and understandability by applying the DISCERN tool and PEMAT-P. The Flesch Reading Ease Score (FRES) was calculated to determine readability. Nine booklets addressing MP were analyzed. The overall median DISCERN score was 3.6 (interquartile range (IQR) 2.9-4.1), median PEMAT-P score was 91% (IQR 83-94.5), and median FRES was 43 (IQR 33.5-47.5), indicating a medium quality, a high application of understandability elements, but low readability in at least half of the booklets. Incomplete reporting on treatments and insufficient meta-information caused the main quality deficits. There is a need of content and didactic revision of German booklets for MP to raise their quality and to make them beneficial and understandable for more patients. An adaption in accordance with evidence-based criteria and an even stronger involvement of MP in assessment and development of patient education material are considered to be the best approaches.


Asunto(s)
Alfabetización en Salud , Lenguaje , Melanoma/psicología , Folletos , Educación del Paciente como Asunto/métodos , Lectura , Vocabulario , Comprensión , Alemania , Humanos , Difusión de la Información/métodos , Melanoma/prevención & control , Educación del Paciente como Asunto/normas , Materiales de Enseñanza
3.
J Dtsch Dermatol Ges ; 16(9): 1093-1101, 2018 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-30091517

RESUMEN

BACKGROUND: This study aimed to explore the information-seeking behavior (ISB) of melanoma patients (MPs) and MP subgroups, in order to provide data for needs-based adaptation of information provision. METHODS: In a cross-sectional survey in 27 German skin cancer centers, we explored characteristics of the ISB of MPs with the aid of a standardized questionnaire. Sub-group differences were determined with the chi-squared test and predictors of media preferences with logistic regression. RESULTS: 67 % of the 529 participating MPs had clinical stage III or IV melanoma. Most of the participants (81 %) reported medical consultations as their regularly or frequently used information resource (IR). 58 % wished to have more advice about IRs from their physician. Only 8 % of MPs used the services of self-help groups and 12 % of MPs took advantage of the services of cancer counseling centers. The internet (63 %) and booklets (58 %) were reported to be the preferred media. Age, educational level, general need for information and lack of awareness of their own condition proved to be predictors for media preferences. CONCLUSIONS: Most MPs expected their physician to advise them about IRs they could use in addition to medical consultations. Peer support services were quite underused by MPs. The various preferences of media by MPs should be considered when deve-loping and providing IRs.


Asunto(s)
Información de Salud al Consumidor , Conducta en la Búsqueda de Información , Internet , Melanoma , Folletos , Médicos , Grupos de Autoayuda , Neoplasias Cutáneas , Factores de Edad , Estudios Transversales , Femenino , Alemania , Conocimientos, Actitudes y Práctica en Salud , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios
9.
Melanoma Res ; 29(2): 196-204, 2019 04.
Artículo en Inglés | MEDLINE | ID: mdl-29787460

RESUMEN

There is a scarcity of available data on unmet information needs (UINs) of melanoma patients (MPs) from Germany and of MPs with clinical stage IV. In a multicenter cross-sectional survey, we explored the UINs of 529 MPs by applying a standardized questionnaire. Subgroup differences in scope and contents of UINs were determined by univariate analyses. Predictors of the presence of UINs were identified by binary logistic regression. Overall, 55% of MPs reported UINs. Most MPs felt poorly or not informed about psychosocial support (24-31%). In MPs currently receiving medical treatment [odds ratio (OR): 1.9; P=0.017], MPs aging of at least 55 years (OR: 1.7; P=0.029), and in MPs who generally had a high need for information on their condition (OR: 2.4; P=0.001), the presence of UINs was significantly more likely than in post-treatment MPs, MPs more than 55 years of age, and those whose general information need was low. Most UINs concerned treatment-related information and were reported by MPs with tumor progression. Presence and scope of UINs did not differ significantly between metastatic and nonmetastatic MPs (57 vs. 53%; P=0.436). We highlighted differences in the presence, scope, and contents of UINs between MP subgroups, which should be considered when educating them in medical consultations and providing information via media. In particular, MPs felt insufficiently informed about psychosocial support and desired more treatment information.


Asunto(s)
Conducta en la Búsqueda de Información , Melanoma/epidemiología , Calidad de Vida/psicología , Estudios Transversales , Femenino , Alemania , Humanos , Masculino , Melanoma/patología , Persona de Mediana Edad , Evaluación de Necesidades , Encuestas y Cuestionarios
10.
Eur J Cancer ; 110: 11-20, 2019 03.
Artículo en Inglés | MEDLINE | ID: mdl-30739835

RESUMEN

BACKGROUND: Combining stereotactic radiosurgery (SRS) and active systemic therapies (STs) achieved favourable survival outcomes in patients with melanoma brain metastases (MBMs) in retrospective analyses. However, several aspects of this treatment strategy remain poorly understood. We report on the overall survival (OS) of patients with MBM treated with a combination of radiotherapy (RT) and ST as well as the impact of the v-Raf murine sarcoma viral oncogene homolog B (BRAF)-V600 mutation (BRAFmut) status, types of RT and ST and their sequence. PATIENTS AND METHODS: Data of 208 patients treated with SRS or whole brain radiation therapy (WBRT) and either immunotherapy (IT) or targeted therapy (TT) within a 6-week interval to RT were analysed retrospectively. OS was calculated from RT to death or last follow-up. Univariate and multivariate Cox proportional hazard analyses were performed to determine prognostic features associated with OS. RESULTS: The median follow-up was 7.3 months. 139 patients received IT, 67 received TT and 2 received IT and TT within 6 weeks to RT (WBRT 45%; SRS 55%). One-year Kaplan-Meier OS rates were 69%, 65%, 33% and 18% (P < .001) for SRS with IT, SRS with TT, WBRT with IT and WBRT with TT, respectively. Patients with a BRAFmut receiving IT combined with RT experienced higher OS rates (88%, 65%, 50% and 18%). TT following RT or started before and continued thereafter was associated with improved median OS compared with TT solely before RT (12.2 [95% confidence interval {CI} 9.3-15.1]; 9.8 [95% CI 6.9-12.6] versus 5.1 [95% CI 2.7-7.5]; P = .03). CONCLUSION: SRS and IT achieved the highest OS rates. A BRAFmut appears to be a favourable prognostic factor for OS. For the combination of RT and TT, the sequence appears to be crucial. Combinations of WBRT and ST achieved unprecedentedly high OS rates and warrant further studies.


Asunto(s)
Neoplasias Cutáneas , Adulto , Anciano , Anciano de 80 o más Años , Neoplasias Encefálicas/mortalidad , Neoplasias Encefálicas/secundario , Neoplasias Encefálicas/terapia , Terapia Combinada , Femenino , Alemania/epidemiología , Humanos , Inmunoterapia/métodos , Inmunoterapia/mortalidad , Masculino , Melanoma/mortalidad , Melanoma/secundario , Melanoma/terapia , Persona de Mediana Edad , Terapia Molecular Dirigida , Mutación/genética , Proteínas Proto-Oncogénicas B-raf/genética , Radiocirugia/métodos , Radiocirugia/mortalidad , Estudios Retrospectivos , Tasa de Supervivencia , Resultado del Tratamiento
11.
Int J Occup Med Environ Health ; 31(2): 227-242, 2018 01 07.
Artículo en Inglés | MEDLINE | ID: mdl-29063910

RESUMEN

OBJECTIVES: Limited research on the health situation of teachers on long-term sick leave is available. The aim of this study has been to describe the health status of female teachers on long-term sick leave (LSFT) in comparison to working female teachers (WFT) and to determine predictors for their state of mental health (MH) and cardiovascular fitness (CF). MATERIAL AND METHODS: Twenty-eight LSFT and 300 WFT (average age: 53±5 years old) participated in a screening diagnostic inventory. Mental health, CF, blood pressure (BP), body mass index (BMI), body fat mass (BFM), health behavior (smoking, alcohol intake, physical activity) and disease burden (DB - number of medical diagnoses) were analyzed for the purpose of characterization of the health status. The multiple linear regression analysis was performed to identify predictors for the state of MH and CF. RESULTS: Adverse values for the MH but also for CF, BFM and the DB (median of medical diagnoses: LSFT: 5; WFT: 2) among the LSFT in comparison to the WFT were confirmed. Additionally, the part of smokers among LSFT (25%) was higher (WFT: 8%). In contrast, the WFT (61%) were much more affected by an elevated BP (LSFT: 26%). Disease burden proved as the strongest predictor for MH of the female teachers. Age, BMI and DB proved as predictors for CF. CONCLUSIONS: Health-related differences between long-term sick leave and working teachers were particularized and a link between physical and mental health among teachers was quantified. Therefore, health-related concepts for teachers should equally focus on physical and psychological aspects. The relevance of regular well-structured occupational health check-ups should be brought to the attention of the profession to prevent diseases and early retirements. Int J Occup Med Environ Health 2018;31(2):227-242.


Asunto(s)
Enfermedades Cardiovasculares/epidemiología , Estado de Salud , Maestros , Ausencia por Enfermedad , Adulto , Estudios Transversales , Femenino , Alemania/epidemiología , Conductas Relacionadas con la Salud , Humanos , Trastornos Mentales/epidemiología , Salud Mental , Persona de Mediana Edad , Factores de Riesgo
12.
JMIR Cancer ; 4(2): e10676, 2018 Dec 13.
Artículo en Inglés | MEDLINE | ID: mdl-30545808

RESUMEN

BACKGROUND: Patients diagnosed with melanoma frequently search the internet for treatment information, including novel and complex immunotherapy. However, health literacy is limited among half of the German population, and no assessment of websites on melanoma treatment has been performed so far. OBJECTIVE: The aim of this study was to identify and assess the most visible websites in German language on melanoma immunotherapy. METHODS: In accordance with the common Web-based information-seeking behavior of patients with cancer, the first 20 hits on Google, Yahoo, and Bing were searched for combinations of German synonyms for "melanoma" and "immunotherapy" in July 2017. Websites that met our predefined eligibility criteria were considered for assessment. Three reviewers independently assessed their quality by using the established DISCERN tool and by checking the presence of quality certification. Usability and reliability were evaluated by the LIDA tool and understandability by the Patient Education Materials Assessment Tool (PEMAT). The Flesch Reading Ease Score (FRES) was calculated to estimate the readability. The ALEXA and SISTRIX tools were used to investigate the websites' popularity and visibility. The interrater agreement was determined by calculating Cronbach alpha. Subgroup differences were identified by t test, U test, or one-way analysis of variance. RESULTS: Of 480 hits, 45 single websites from 30 domains were assessed. Only 2 website domains displayed a German quality certification. The average assessment scores, mean (SD), were as follows: DISCERN, 48 (7.6); LIDA (usability), 40 (2.0); LIDA (reliability), 10 (1.6); PEMAT, 69% (16%); and FRES, 17 (14), indicating mediocre quality, good usability, and understandability but low reliability and an even very low readability of the included individual websites. SISTRIX scores ranged from 0 to 6872 and ALEXA scores ranged from 17 to 192,675, indicating heterogeneity of the visibility and popularity of German website domains providing information on melanoma immunotherapy. CONCLUSIONS: Optimization of the most accessible German websites on melanoma immunotherapy is desirable. Especially, simplification of the readability of information and further adaption to reliability criteria are required to support the education of patients with melanoma and laypersons, and to enhance transparency.

SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA