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INTRODUCTION: Evidence supports the potential value of matching patient preferences to treatment recommendations. The aim of the study was to design and validate a questionnaire on treatment satisfaction for clinical decision-making. METHODS: We performed a comprehensive literature search identifying measurable indicators. The complete item pool was condensed to a core set by a multidisciplinary expert panel and tested in a multicentre, observational, cross-sectional study. RESULTS: The questionnaire consisted of 8 questions, rated on a 5-point Likert scale. In total, 213 dermatology centres included 2,084 patients. The mean disease duration was 19 years. A majority of patients (82.8%) was moderately to very satisfied. 108 patients (5.8%) felt to be bothered by side effects, and 32.1% ascertained that the current therapy had been conducted for too long without success. DISCUSSION: The PsoSat Questionnaire was shown to be a reliable and valid instrument for measuring therapy-related satisfaction. Further research on its implementation in clinical decision-making is necessary to finally evaluate the benefit of this tool.
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Terapia Biológica/métodos , Manejo de la Enfermedad , Satisfacción del Paciente , Psoriasis/terapia , Calidad de Vida , Encuestas y Cuestionarios , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Humanos , Persona de Mediana Edad , Reproducibilidad de los Resultados , Adulto JovenRESUMEN
BACKGROUND: The Swiss psoriasis registry SDNTT (Swiss Dermatology Network for Targeted Therapies) records the long-term safety and effectiveness of systemic treatment regimens for psoriasis. PATIENTS AND METHODS: Patients with moderate to severe psoriasis are included in the SDNTT when treatment with a conventional systemic agent or biologic is initiated that was not previously used by the respective patient. Patients are followed over a 5-year period. Clinical data are obtained every 3-6 months using standardized case report forms. Here, baseline data and follow-up data for 1 year of patients included from October 2011 until December 2014 were analyzed. RESULTS: Within 39 months, 323 patients from 7 tertiary dermatology centers in Switzerland were recruited in the SDNTT; 165 patients received biologics and 158 conventional systemic therapies. Patients treated with biologics had a significantly higher severity (PASI 11.3 vs. 9.2, BSA 15.6 vs.11.9, psoriatic arthritis 36.4 vs. 10.8%; p ≤ 0.005, p ≤ 0.013, p ≤ 0.001) and a longer duration of illness (19.2 vs. 14.4 years, p ≤ 0.003) compared to patients starting a conventional systemic treatment. PASI reduction was satisfying in both treatment groups, with 60.6% of patients treated with biologics achieving PASI75 after 1 year compared to 54.2% of patients receiving conventional systemic drugs (nonsignificant). On average, the drug survival in patients receiving a biologic therapy was significantly longer than those receiving conventional systemic treatments (30.5 vs. 19.2 months, p ≤ 0.001). CONCLUSIONS: In the real-world setting of a prospective national therapy registry, the application of current therapeutic guidelines for patients with moderate to severe psoriasis resulted in a PASI reduction of approximately 70% within the first year of treatment, but current therapeutic targets of PASI75 and PASI90 were reached in only 58 and 36% of patients, respectively, at 1 year, highlighting a gap in efficacy between selective clinical trials and the real-world setting.
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Psoriasis/epidemiología , Psoriasis/terapia , Productos Biológicos/uso terapéutico , Humanos , Psoriasis/tratamiento farmacológico , Sistema de Registros , Suiza/epidemiología , Resultado del TratamientoRESUMEN
BACKGROUND: In Germany population-based data on health care of basal cell carcinoma (BCC) are rare. OBJECTIVE: To analyze the relationship between socio-demographic and regional factors, health insurance status and clinical features of BCC. METHODS: Data base was from a nationwide dermatopathology laboratory. All consecutive excisions from 2010 were analyzed regarding tumor-specific and socioeconomic characteristics of BCC. RESULTS: 9,467 histologically verified BCC derived from 7,116 patients (54.1 % male, mean age 70 years) were analyzed. 33 % of patients had multiple tumors. The average vertical depth of invasion of BCC was 1.27 mm. It was increased significantly (p ≤ 0.001) in men (1.33 mm vs. 1.19 mm in women) and in persons over 70 years of age (1.36 mm vs. 1.14 mm). Controlled for age and sex, members of agricultural health-insurances (LKK) and of German local public health insurances (AOK) showed the highest tumor depths (1.45 mm resp.1.42 mm). The lowest depths (1.17 mm) were found in insurees of the substitute health funds (Ersatzkassen) (p ≤ 0.001). Vertical depth of invasion was significantly increased for patients living in rural counties (1.34 mm) compared to patients from urban areas (1.21 mm). Furthermore, the distribution of BCC locations varied by type of health insurance. CONCLUSIONS: Area of residence, health insurance status, age and gender are relevant determinants of BCC health care in Germany. Prevention programs and activities to improve early detection by health insurances should take this into account.
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Carcinoma Basocelular/epidemiología , Carcinoma Basocelular/patología , Empleo/estadística & datos numéricos , Cobertura del Seguro/estadística & datos numéricos , Neoplasias Cutáneas/epidemiología , Neoplasias Cutáneas/patología , Distribución por Edad , Femenino , Alemania/epidemiología , Humanos , Cobertura del Seguro/clasificación , Masculino , Persona de Mediana Edad , Invasividad Neoplásica , Prevalencia , Factores de Riesgo , Distribución por Sexo , Factores SocioeconómicosRESUMEN
BACKGROUND: The German psoriasis registry PsoBest records the long-term efficacy, safety, patient benefit and treatment regimens of psoriasis. PATIENTS AND METHODS: Patients with moderate or severe psoriasis are included in PsoBest when treatment with a conventional systemic agent or biologic is started for the first time. Observation time is five years. Standardized physician and patient case report forms are obtained every three to six months. Baseline data of patients included by 31 December 2012 are presented and compared to the national health care study PsoHealth 2007 (n = 2,009). RESULTS: 602 dermatology practices and clinics have been registered and 199 have recruited n = 2,556 patients (63 % by practices, 37 % by clinics). Initially, n = 808 received biologics (316 adalimumab, 34 efalizumab, 209 etanercept, 75 infliximab, 22 golimumab, 152 ustekinumab) and n = 1,651 conventional systemic therapy (928 fumaric acid esters, 518 methotrexate, 161 cyclosporine A, 191 other drugs or UV treatment). Compared to PsoHealth, patients in PsoBest had on average a higher disease severity (PASI 14.7 vs. 10.1; DLQI 11.0 vs. 7.5; EQ-5D VAS 54.0 vs. 64.5), shorter disease duration (18.2 vs. 21.3 yrs.), lower age (47.3 vs. 51.5), higher rates of psoriatic arthritis (20.5 vs. 19.1 %) and nail psoriasis (55.0 vs. 35.6 %). On average patients receiving biologics were younger, more often male and had higher disease severity and comorbidity. CONCLUSIONS: Patients in PsoBest represent patients with a high burden of disease.
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Antineoplásicos/uso terapéutico , Pautas de la Práctica en Medicina/estadística & datos numéricos , Psoriasis/epidemiología , Psoriasis/terapia , Sistema de Registros , Terapia Ultravioleta/estadística & datos numéricos , Adolescente , Adulto , Distribución por Edad , Anciano , Productos Biológicos/uso terapéutico , Dermatología/estadística & datos numéricos , Femenino , Alemania/epidemiología , Humanos , Masculino , Persona de Mediana Edad , Prevalencia , Factores de Riesgo , Distribución por Sexo , Resultado del Tratamiento , Adulto JovenRESUMEN
Patient-oriented care requires therapeutic decisions to agree with the patients' treatment needs and goals. This study addressed the following questions: What is important to psoriasis patients starting systemic treatment? How stable are these preferences within the first year of treatment? Are treatment goals associated with age, gender, or treatment success? The importance of treatment goals was assessed for patients with moderate-to-severe psoriasis in the German Psoriasis Registry (PsoBest) at baseline (onset of a systemic treatment; n = 3066) and at a 1-year follow-up (n = 1444) using the Patient Benefit Index (PBI). Treatment success was measured with PBI global score and Psoriasis Area Severity Index (PASI). Patients with moderate-to-severe psoriasis pursued a wide range of different goals. The most general treatment goals were rated most relevant, including skin healing and quick skin improvement (94.8/94.5 % "quite" or "very" important), confidence in the therapy (93.0 %), control over the disease (92.3 %), and a clear diagnosis and therapy (89.6 %). Further important goals related to not being in fear of the disease getting worse (84.8 %), reduction in itching (83.9 %), burning (70.6 %), and pain (60.6 %) as well as attaining a normal everyday life (78.4 %) and low treatment burden (64.2-77.9 %). Goals were mostly not associated with sex and gender. Goal importance slightly increased with treatment success. In a substantial proportion of patients (30.3-54.7 %) goal importance changed within 1 year after onset of systemic treatment. We conclude that treatment goal importance should be assessed in clinical practice on a regular basis.