scholarly journals PND121 CLINICAL OUTCOME ASSESSMENTS IN RELAPSE REMITTING MULTIPLE SCLEROSIS: INTEGRATION OF CLINICIAN AND PATIENT REPORTED OUTCOMES IN REAL WORLD EVIDENCE PUBLICATIONS

2020 ◽  
Vol 23 ◽  
pp. S282-S283
Author(s):  
R.W. van den Broek ◽  
R. Gadiot-Molenaar ◽  
T. Hartog
Keyword(s):  
Multiple Sclerosis ◽  
Clinical Outcome ◽  
Real World ◽  
Patient Reported Outcomes ◽  
Outcome Assessments ◽  
Real World Evidence ◽  
Patient Reported ◽  
Remitting Multiple Sclerosis ◽  
Clinical Outcome Assessments

scholarly journals Development of a Conceptual Framework of Patient-reported Outcomes in Light Chain Amyloidosis: A Qualitative Study

2021 ◽  
Author(s):  
Anita D'Souza ◽  
Judith Myers ◽  
Rachel Cusatis ◽  
Angela Dispenzieri ◽  
Muriel Finkel ◽  
...  
Keyword(s):  
Clinical Outcome ◽  
Conceptual Understanding ◽  
Light Chain ◽  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
Al Amyloidosis ◽  
Outcome Assessments ◽  
Patient Reported ◽  
Clinical Outcome Assessments ◽  
The Impact

Abstract Background Light chain (AL) amyloidosis is a plasma cell neoplasm associated with high early mortality and severe morbidity that can cause severe disability. We explored the impact of AL amyloidosis on symptoms and well-being from the perspectives of patients and health care providers who regularly care for AL patients. We intended to develop a conceptual understanding of patient-reported outcomes in AL amyloidosis to identify the context of use and concept of interest for a clinical outcome assessments tool in this disease.Method Twenty patients and 10 professionals were interviewed. Patient interviews captured the spectrum of amyloidosis experience including time from diagnosis, type of organ involvement, and presence and type of treatment received. Interviews with professionals included physicians, advanced practice providers, registered nurse, and a patient advocate; these interviews covered similar topics. Results The impact of AL amyloidosis on patients’ life was multidimensional, with highly subjective perceptions of normality and meaning. Four major themes from patients and experts included diagnosis of AL amyloidosis, living with AL amyloidosis, symptom burden, and social roles. Barriers to patient-reported outcomes data collection in patients were additionally explored from experts. The themes provide a comprehensive understanding of the important experiences of symptom burden and its impact on daily life from AL amyloidosis patients’ and from the perspectives of professionals who care for patients with AL amyloidosis. Conclusion These findings further the conceptual understanding and identification of a preliminary model of concept of interest for development of a clinical outcome assessments tool for AL amyloidosis.

Unveiling the real-world outcomes of breast cancer (BC) patients with taxanes-induced neuropathy using a digital patient-powered network (PPN).

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18248-e18248
Author(s):  
Raanan Berger ◽  
Lior Hasid ◽  
Irad Deutsch ◽  
Eliran Malki ◽  
Maytal Bivas-Benita
Keyword(s):  
Cancer Patients ◽  
Real World ◽  
Healthcare Costs ◽  
Patient Reported Outcomes ◽  
Early Stage ◽  
Treatment Decisions ◽  
Real World Evidence ◽  
Patient Reported ◽  
The Us ◽  
Disease Stages

e18248 Background: Taxanes-induced neuropathy is common in BC patients receiving taxanes, forcing dose reductions and treatment delays and posing serious challenges for the long-term patient QoL. Discovering neuropathy predictors in patients could guide better treatment decisions, improved QoL and reduce healthcare costs. Belong digital PPN is a social network for cancer patients and caregivers that supports disease management. In this study we used our artificial intelligence (AI) engine to classify the prevalence, characteristics and taxanes-induced neuropathy status of BC patients. Methods: We analyzed real-world patient-reported outcomes provided voluntarily and anonymously from users on the Belong PPN. Data from BC patients reporting treatment with taxanes was extracted and additional analysis segmented the data to those who experienced neuropathy and those who did not. Further validation of the data was performed by our research team to assure accuracy. Results: We evaluated 169 BC cancer patients from the US treated with taxanes. In the cohort 72% were Paclitaxel-treated and 28% Docetaxel-treated at various disease stages: 68% at early stage BC (0-2) and 32% at the advanced/metastatic stages (3-4). 83% of Paclitaxel-treated patients and 67% of Docetaxel-treated patients reported experiencing neuropathy in the Belong platform. These real-world reports indicated significantly higher incidence of taxane-induced neuropathy in comparison to literature summarizing data from clinical trials, suggesting neuropathy incidence of 27% for paclitaxel and 16% for docetaxel (grades 2-4). Conclusions: Real-world patient-reported outcomes from the Belong PPN captured the prevalence of taxanes-induced neuropathy in BC patients and correlated it to the specific drug in use. Evidence for higher incidence of taxanes-induced neuropathy may lead to lower patient QoL and higher healthcare costs and should stimulate better treatment decisions. Further exploration of the gap between controlled clinical studies and real-world evidence is urgently needed to understand the true patient outcomes and optimize healthcare accordingly.

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