Quality of survival: a new concept framework to assess the quality of prolonged life in cancer

Background: Improved cancer care means that more patients are surviving longer, but there is a need to examine how well patients survive. We conducted an exploratory analysis of a new conceptual framework termed ‘quality of survival’ (QoS) that delineates the quality of patients’ experience. Methods: This project included an electronic database search to investigate the survivorship landscape and to create a visual QoS map and semi-structured interviews with patients (n = 35), clinicians (n = 40), and payers (n = 7) to support the QoS map. QoS was discussed in the context of two tumor types, metastatic non-small cell lung cancer and metastatic melanoma. Results: Despite increased long-term survival, no specific definition of QoS exists. Patients reported many impacts that affect QoS, clinicians viewed QoS as relevant to treatment decisions, and payers felt it could help communicate different aspects relevant to the patient. Four interconnected QoS dimensions were developed (quality of life, survival, side effects, and economic impact), which vary in importance along the care continuum. Conclusion: QoS is a patient-centric concept that could help decision-making and patient communication. The QoS map could provide a framework to monitor patient experience and help patients frame what treatment attribute is most important to them at any point in the cancer continuum

Effect of nivolumab (NIVO) on quality of life (QoL) in patients (pts) with treatment-naïve advanced melanoma (MEL): results of a phase III study (CheckMate 066)

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Псориаз: клинико-эпидемиологические особенности и вопросы терапии

Aim. This study sets out to establish the demographic and clinical features of psoriasis and its co-morbidities; to describe approaches to treating patients in Russia, to whom the systemic therapy of drugs has been recommended; to assess the effects of this dermatosis on the patients' quality of life and work productivity; to assess the degree of consistency between dermatologists' and patients' estimates concerning the severity of the disease, complaints/objective manifestations and treatment satisfaction.Methods. Data from the GfK Disease Atlas was used. This ATLAS was filed within a global programme Growth from Knowledge that collected reliable data in the context of everyday clinical practice in 9 countries. The paper presents the results solely for the Russian sample. The study involved patients with moderate or severe psoriasis who were receiving systemic therapy for this disease. Using specially developed forms, ATLAS specialists registered data about patients, their disease and received treatment. The patients affected by psoriasis, who participated in the study, were questioned about their disease. Dermatologists assessed the severity of psoriasis, the patients' complaints, co-morbidities and received treatment. The patients completed questionnaires aimed at assessing the quality of their life [Dermatology Life Quality Index, DLQI] and their work productivity [Work Productivity and Activity Impairment, WPAI]. The concordance between the patients' and the dermatologists' estimates was assessed using Cohen's kappa coefficient.Results. Overall, 3,821 patients participated in the ATLAS programme, out of whom 300 patients were Russians. The average time since psoriasis diagnosis amounted to 9.9 years. 51 % of the patients complained about itching in the lesion areas. Psoriatic arthritis was registered in 19 % of the cases. Among co-morbidities, anxiety or depression was most often recorded (11 %, respectively). The proportion of patients with pruritus and related comorbid conditions increased with psoriasis severity. The disease negatively affected the quality of patients’ life (the average value of DLQI was 7.1) and their work productivity (a decrease in the work productivity reached 33.2 %), with these indicators deteriorating with psoriasis severity. Despite the dominance of moderate and severe psoriasis forms among the participants, 60 % of the patients received therapy only with topical medications. The concordance rate between the patients and the dermatologists concerning the estimation of psoriasis severity and treatment satisfaction was low.Conclusion. Despite the therapy with systemic drugs, the patients' quality of life affected by severe or moderate psoriasis forms remained low. The consistency between the views on the treatment success between the patients and the dermatologists was low.Цель: Установить демографические и клинические характеристики псориаза, коморбидных ему состояний и подходы к лечению российских пациентов, которым была показана терапия системными препаратами; оценить влияние данного дерматоза на качество жизни и работоспособность пациентов, а также оценить степень согласованности оценок о тяжести заболевания, жалоб/объективных проявлений и удовлетворенности лечением псориаза между пациентами и дерматологами.Методы. Использовались данные, полученные в Глобальной программе сбора доказательных данных в условиях повседневной клинической практики Growth from Knowledge (GfK) Disease ATLAS, проводившейся в девяти странах. В работе представлены результаты только по российской выборке. В исследовании участвовали пациенты со среднетяжелым или тяжелым псориазом, которые получали системную терапию по поводу данного заболевания. В рамках наблюдательной программы ATLAS специалисты регистрировали данные о пациентах, их заболевании и проводимом лечении в специально разработанных формах. Больные псориазом, участвовавшие в исследовании, самостоятельно отвечали на вопросы о своем заболевании. Дерматологами оценивались тяжесть псориаза, имеющиеся жалобы, коморбидности и проводимое лечение, в то время как пациенты заполняли опросники по оценке качества жизни и работоспособности (дерматологический индекс качества жизни [Dermatology Life Quality Index, DLQI] и опросник производительности труда и повседневной активности [Work Productivity and Activity Impairment, WPAI] соответственно). Конкордантность оценок пациентов и дерматологов оценивалась по каппа-коэффициенту Коэна.Результаты: Всего в программе ATLAS в мире участвовали 3821 пациент, из которых 300 были российскими. Среднее время с момента постановки диагноза псориаза составило 9,9 года. 51 % пациентов предъявляли жалобы на зуд в очагах поражения. Псориатический артрит зарегистрирован в 19 % случаев. Среди коморбидностей наиболее часто регистрировали тревожность либо депрессия (11 % соответственно). Доля пациентов с зудом и сопутствующими коморбидными состояниями увеличивалась по мере нарастания тяжести псориаза. Заболевание отрицательно сказывалось на качестве жизни пациентов (среднее значение DLQI 7,1) и работоспособности (снижение работоспособности составило 33,2 %), причем данные показатели ухудшались по мере нарастания тяжести заболевания. Несмотря на доминирование среднетяжелых и тяжелых форм псориаза у участников исследования, 60 % пациентов получали только терапию топическими лекарственными средствами. Установленная степень конкордантности между пациентами и дерматологами по оценке тяжести псориаза и общей удовлетворенности достигнутыми результатами проводимой терапии была низкой.Вывод. Несмотря на проводимую терапию системными препаратами, качество жизни пациентов с тяжелым и среднетяжелым псориазом оставалась сниженной. Согласованность представлений об успешности результатов лечения данного дерматоза между пациентами и дерматологами была низкой

Psoriasis: clinical and epidemiological features and therapy issues

Aim. This study sets out to establish the demographic and clinical features of psoriasis and its co-morbidities; to describe approaches to treating patients in Russia, to whom the systemic therapy of drugs has been recommended; to assess the effects of this dermatosis on the patients' quality of life and work productivity; to assess the degree of consistency between dermatologists' and patients' estimates concerning the severity of the disease, complaints/objective manifestations and treatment satisfaction.Methods. Data from the GfK Disease Atlas was used. This ATLAS was filed within a global programme Growth from Knowledge that collected reliable data in the context of everyday clinical practice in 9 countries. The paper presents the results solely for the Russian sample. The study involved patients with moderate or severe psoriasis who were receiving systemic therapy for this disease. Using specially developed forms, ATLAS specialists registered data about patients, their disease and received treatment. The patients affected by psoriasis, who participated in the study, were questioned about their disease. Dermatologists assessed the severity of psoriasis, the patients' complaints, co-morbidities and received treatment. The patients completed questionnaires aimed at assessing the quality of their life [Dermatology Life Quality Index, DLQI] and their work productivity [Work Productivity and Activity Impairment, WPAI]. The concordance between the patients' and the dermatologists' estimates was assessed using Cohen's kappa coefficient.Results. Overall, 3,821 patients participated in the ATLAS programme, out of whom 300 patients were Russians. The average time since psoriasis diagnosis amounted to 9.9 years. 51 % of the patients complained about itching in the lesion areas. Psoriatic arthritis was registered in 19 % of the cases. Among co-morbidities, anxiety or depression was most often recorded (11 %, respectively). The proportion of patients with pruritus and related comorbid conditions increased with psoriasis severity. The disease negatively affected the quality of patients’ life (the average value of DLQI was 7.1) and their work productivity (a decrease in the work productivity reached 33.2 %), with these indicators deteriorating with psoriasis severity. Despite the dominance of moderate and severe psoriasis forms among the participants, 60 % of the patients received therapy only with topical medications. The concordance rate between the patients and the dermatologists concerning the estimation of psoriasis severity and treatment satisfaction was low.Conclusion. Despite the therapy with systemic drugs, the patients' quality of life affected by severe or moderate psoriasis forms remained low. The consistency between the views on the treatment success between the patients and the dermatologists was low

Secukinumab demonstrates sustained efficacy in clearing skin and improving patient-reported outcomes in patients with moderate-to-severe psoriasis through 2 years of treatment : Results from the CLEAR study

Altres ajuts: The authors thank Dhaval Gupta, MPH (Novartis Healthcare Pvt Ltd, India), and Jackie L. Johnson, PhD (Novartis Ireland Ltd), for providing medical writing support, which was funded by Novartis Pharma AG, Basel, Switzerland, in accordance with Good Publication Practice guidelines (http://www.ismpp.org/gpp3)

Differential effects of secukinumab vs. ustekinumab for treatment of psoriasis on quality of life, work productivity and activity impairment: a structural equation modelling analysis

Purpose This study examined direct and indirect (mediated) effects of secukinumab vs. ustekinumab on quality of life, work productivity, and activity impairment based on psoriasis severity and symptoms. Methods Analyses were based on data from the CLEAR study. Structural equation modelling (SEM) examined the effects of secukinumab vs. ustekinumab on the Dermatology Life Quality Index (DLQI) and on the Work Productivity and Activity Impairment (WPAI) questionnaire using Psoriasis Area Severity Index (PASI) severity and symptoms (pain, itching, and scaling) as potential mediators. Analyses were conducted primarily for patients achieving PASI 90 response (indicating a 90% or greater reduction in PASI from baseline) at week 16 (repeated at week 52) and for PASI 50, 75, and 100. Results Results at weeks 16 and 52 showed that the effect of treatment on change in DLQI score was mediated by PASI 90 response and by improvements in itching and scaling. Achieving any PASI response as early as week 16 directly resulted in significantly better WPAI scores. At week 52, both PASI response and improvement in scaling directly resulted in significantly better WPAI scores. Pain, itching, and scaling were correlated (r = 0.51 to 0.68); improvement in any of these had a significant effect (directly or indirectly) on WPAI. All results favoured secukinumab over ustekinumab. Conclusion The results underscore the important role of both PASI response and reduction in symptoms on improvements in health-related quality of life and work and daily activity in favour of secukinumab vs. ustekinumab