scholarly journals French patient-reported experience of diagnosis, management and burden of neuroendocrine tumors

2020 ◽  
Vol 7 (2) ◽  
pp. IJE31
Author(s):  
Catherine Lombard-Bohas ◽  
Christine Do Cao ◽  
Jean-Philippe Metges ◽  
Philippe Ruszniewski ◽  
Denis Smith ◽  
...  
Keyword(s):  
Neuroendocrine Tumors ◽  
Negative Impact ◽  
Social Systems ◽  
Patient Survey ◽  
Patient Reported ◽  
The Usa ◽  
Disease Impact ◽  
Key Topics ◽  
Delays In Diagnosis

Background: There is a lack of knowledge regarding the experience of patients with neuroendocrine tumors (NET) in France. Materials & methods: A patient survey that captured information on diagnosis, disease impact/management and awareness was conducted. Data of respondents from France were analyzed and compared with US data as a reference. Results: Key topics included delays in diagnosis, negative impact on quality of life, patient access to NET medical experts and treatments, and information on NET and treatments. Significant differences were observed between France and the USA regarding NET diagnosis. Conclusion: This survey highlights the considerable burden experienced by patients in France with NET and differences in patient experience between France and the USA that may result from different healthcare and social systems.

scholarly journals relationship between circadian rhythm and severity of psoriasis and obesity

2021 ◽  
Vol 27 (1-2) ◽  
pp. 22-29
Author(s):  
Ya.O. Yemchenko ◽  
◽  
K.Ye. Ischeikin ◽  
I.P. Kaidashev ◽  
O.V. Bezeha ◽  
...  
Keyword(s):  
Circadian Rhythm ◽  
Weight Gain ◽  
Negative Correlation ◽  
Negative Impact ◽  
Working Capacity ◽  
High Negative Correlation ◽  
Disease Impact ◽  
Very High

The research aim is to identify the correlation between circadian rhythm in terms of changes in the chronotype of human working capacity and severity of psoriasis progression, obesity, and the disease impact on the quality of patients' life. Materials and Methods. The research focuses on the determination of the PASI, BMI, DIAG indexes and a patient's chronotype of working capacity. Results and Discussion. The results of the correlation analysis showed a very high negative correlation between chronotype of patients' working capacity and BMI. They also demonstrated a high negative correlation between PASI and DIAG indicators and chronotype of patients' working capacity. Conclusions. The circadian rhythm changes to the evening chronotype of human working capacity contribute to psoriasis worsening, weight gain, and negative impact of the disease on the quality of patients' life.

scholarly journals Living With Neuroendocrine Tumors: Assessment of Quality of Life Through a Mobile Application

2019 ◽  
pp. 1-10 ◽  
Author(s):  
Jared R. Adams ◽  
David Ray ◽  
Renee Willmon ◽  
Sonia Pulgar ◽  
Arvind Dasari
Keyword(s):  
Quality Of Life ◽  
Neuroendocrine Tumors ◽  
Mobile Application ◽  
Somatostatin Analogs ◽  
Physical Symptoms ◽  
Measurement Information ◽  
Treatment Change ◽  
Patient Reported ◽  
Long Acting

PURPOSE To understand the quality of life (QoL) for patients with neuroendocrine tumors (NETs) through comparison of QoL questionnaires and symptom tracking as well as journaling via the Carcinoid NETs Health Storylines mobile application (app). PATIENTS AND METHODS This was a 12-week prospective, observational study of US patients with NET who were taking long-acting somatostatin analogs. National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) and European Organisation for Research and Treatment of Cancer (EORTC) questionnaires were administered three times. Patients also monitored symptoms, mood, bowel movements, food, activity, and sleep, and they journaled in their app, which was coded by theme and sentiment for qualitative analysis. RESULTS Of the 120 patients with NET, 78% were women (mean age, 57 years); 76% had gastroenteropancreatic NETs, and 88% had metastases. Lanreotide depot and octreotide long-acting release (LAR) were used by 41% and 59%, respectively. The most common symptoms at baseline were fatigue (76.7%), diarrhea (62.5%), abdominal discomfort (64.1%), and trouble sleeping (57.5%). The majority completed five of six survey assessments (median, 5; mean, 5.1) and tracked four symptoms in the app (median, 4; mean, 5.5); the average frequency was 41.6 days for each symptom (median, 43; mean, 41.6; range, 1 to 84 days [12 weeks]). Without treatment change, most EORTC-assessed physical symptoms decreased from baseline to midpoint (eg, 59.3% at baseline v 33% at midpoint reported “quite a bit” or “very much” diarrhea; P = .002). App-based symptom tracking revealed large day-to-day variation, but weekly averages correlated well with survey scores. Journal entries showed that more patients made predominantly negative unsolicited entries about their injection experience with octreotide LAR compared with lanreotide (13 of 17 v two of 13; P < .001). CONCLUSION Patients with NET experience a large symptom burden that varies daily. A decrease in physical symptoms on QoL surveys suggests an effect from daily app-based monitoring or journaling, which may reduce recall bias and benefit the patient’s experience of symptoms.

Networked improvement communities

2017 ◽  
Vol 25 (1) ◽  
pp. 5-25 ◽  
Author(s):  
Paul G. LeMahieu ◽  
Alicia Grunow ◽  
Laura Baker ◽  
Lee E. Nordstrum ◽  
Louis M. Gomez
Keyword(s):  
Quality Improvement ◽  
Social Systems ◽  
New Teacher ◽  
Added Value ◽  
Content Type ◽  
Public School Systems ◽  
The Usa ◽  
Theoretical Foundations

Purpose The purpose of this paper is to delineate an approach to quality assurance in education called networked improvement communities (NICs) that focused on integrating the methodologies of improvement science with few of the networks. Quality improvement, the science and practice of continuously improving programs, practices, processes, products and services within organized social systems, is a still-evolving area in education. This paper is the first of seven elaborating upon different approaches to quality improvement in education[1]. It delineates a new methodology called the NICs model. Developed by the Carnegie Foundation for the Advancement of Teaching, the approach is aimed at continuously improving the quality of practices, processes and outcomes in targeted problem areas in education systems. Design/methodology/approach The paper presents the historical development, theoretical foundations, core principles and adaptation of key elements of the NICs model for quality improvement in education. A case study specifically examines the problem of fostering new teacher effectiveness and retention in large public school systems in the USA. Findings The six principles underlying the NICs model are as follows: make the work problem-specific and user-centered, focus on variation in performance, see the system that produces outcomes, improve at scale what you can measure, use disciplined inquiry to drive improvement and accelerate learning through networked communities. Originality/value Few theoretical treatments and demonstration cases are currently available that examine the application of common models of quality improvement in education. This paper elaborates on one promising approach. In addition to examining the NICs model, the paper derives added value by allowing comparisons with seven widely used quality improvement approaches treated in this volume.

A Novel Electronic Application of Patient-reported Outcomes in Multiple Sclerosis – Meeting the Necessary Challenge of Assessing Quality of Life and Outcomes in Daily Clinical Practice

2014 ◽  
Vol 9 (1) ◽  
pp. 49 ◽  
Author(s):  
Simon Exell ◽  
Mark Thristan ◽  
Fernando Dangond ◽  
Kurt Marhardt ◽  
Meaghan St Charles Krohe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Negative Impact ◽  
Patient Reported Outcome ◽  
Software Application ◽  
Wireless Data Transmission ◽  
Patient Reported ◽  
Auto Injector

Multiple sclerosis (MS) has a substantial negative impact on health-related quality of life. Clinical assessments often do not include standardised, routine assessment of MS impact from the patient perspective, and communication between healthcare practitioners (HCPs) and patients can be lacking. Thus, there is a need for patient-reported outcome (PRO) measures to encourage patient–HCP communication, to help inform HCPs of matters important to patients and to aid both patients and HCPs in managing the disease. MSdialog is a web- and mobile-based software application that works with auto-injector devices and electronic autoinjectors, including the RebiSmart® 2.0 device (a handheld electronic Rebif® auto-injector with wireless data transmission capabilities, CE marked and available worldwide [excluding the US]) to collect and store real-time, point-of-administration adherence, clinician-reported outcomes and PRO data. MSdialog may provide a practical solution to support patient-proactive engagements and self-management, patient-centred care and participatory decision-making in clinical practice.

scholarly journals The Impact of COVID-19 on the Dietary Habits of Middle-Class Population in Mulund, Mumbai, India

2020 ◽  
Author(s):  
Vidhi Mehta
Keyword(s):  
Dietary Habits ◽  
Preventive Measures ◽  
Negative Impact ◽  
Health Sector ◽  
Eating Patterns ◽  
Early Implementation ◽  
The Usa ◽  
The Individual ◽  
The Impact

In India, the SARS-CoV-2 COVID-19 pandemic has grown to 112,359 cases and 3,435 deaths as per 21st May, 2020. The severe acute respiratory syndrome (SARS) affected the world with 4,893,186 cases and 323,256 deaths as of 21st May, 2020. The WHO declared the outbreak as a public health emergency of international concern on 30th January, 2020 and it was declared as a pandemic in March 2020. Clinical studies conducted on hospitalized cases show that the onset of COVID-19 is associated with symptoms commonly associated with viral pneumonia, most commonly fever, cough/sore throat and myalgia/fatigue. COVID-19 world pandemic imposed a new set of challenges for the individual to maintain a healthy diet. When compared to the USA, India is currently facing lesser cases of the pandemic because of early implementation of the preventive measures such as a lockdown. Because of the lockdown imposed, India has and is facing a downfall in every aspect, such as the economy, the agriculture, the health sector, the IT and management sectors and also tourism. This in turn, will have a negative impact on the quality of life and economy in India. The present paper aims to find out the impact of COVID-19 pandemic on the health sector and is based on the results obtained from a survey about the eating patterns of participants from Mulund, Mumbai, India. It was seen that the mental stress caused due to the pandemic had an effect on the dietary behaviors of the participants.

scholarly journals TANGO: effect of tango Argentino on cancer-associated fatigue in breast cancer patients—study protocol for a randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Shiao Li Oei ◽  
Thomas Rieser ◽  
Sarah Becker ◽  
Jessica Groß ◽  
Harald Matthes ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Sleep Quality ◽  
Cancer Patients ◽  
Negative Impact ◽  
Controlled Trial ◽  
Breast Cancer Patients ◽  
Argentine Tango ◽  
Patient Reported

Abstract Background The majority of breast cancer patients suffer from persistent impairments after completion of their primary oncological therapy. Cancer-related fatigue (CRF) in particular is a multidimensional syndrome having a profound negative impact on the quality of life. To counter CRF symptoms, physical activities are suggested as first-line interventions, mind-body therapies have been shown to be effective, and music therapy can also reduce anxiety and stress in breast cancer patients. Tango therapy that combines various elements can have an impact on physical, psychological, and cognitive abilities and could therefore have a beneficial effect on breast cancer patients. The purpose of this study is to investigate whether a 6-week tango module is suited as a therapeutic approach for people after primary breast cancer therapy to favorably influence their quality of life, especially CRF levels. Methods Sixty patients with a diagnosis for stage I–III breast cancer 12–48 months before enrollment and with CRF (age > 18) will be recruited and randomized 1:1 to a tango or a waiting-list group. Movement concepts using elements of Argentine tango (self-awareness, musical and spatial perception, self-perception, playfulness, shared experience) will be examined with the participants during six consecutive weekly 1-h tango sessions. The primary outcome will be the improvement of CRF (German version of the Cancer Fatigue Scale), and the secondary outcomes will be the improvement in sleep quality (Pittsburgh Sleep Quality Index) and quality of life (EORTC-QLQ-C30). Patient-reported outcomes will be measured at baseline and 6 weeks later; follow-up will be performed 6, 12, and 24 months after baseline. An evaluation will be performed by means of descriptive data analyses. Discussion Argentine tango, as a music-based movement therapy, can influence different skills and may improve several outcomes. The therapeutic use of Argentine tango in the care of breast cancer patients has not yet been reported. It is anticipated that participants receiving the tango module will have improved CRF, sleep, and quality of life scores compared to a waitlist control. Trial registration German Clinical Trials Registry (DRKS) DRKS00021601. Retrospectively registered on 21 August 2020

scholarly journals ‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum

2020 ◽  
Author(s):  
Melanie Sloan ◽  
Michael Bosley ◽  
Moira Blane ◽  
Lynn Holloway ◽  
Colette Barrere ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Online Forum ◽  
Autoimmune Rheumatic Disease ◽  
Effective Care ◽  
Care And Support ◽  
Life Threatening ◽  
Physical Impact ◽  
Delays In Diagnosis

Abstract Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care, having an impact on quality of life. The disease itself, and these patients’ perspectives, are currently poorly understood and under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a means of support, understanding and validation. Forum members expressed difficulties in diagnosis, disease management, and the psychological and physical impact of living with an unpredictable, poorly understood disease, often with life-changing symptoms. Invalidating personal, social and medical environments were perceived as exacerbating these difficulties. Delays in diagnosis and misdiagnoses were frequently discussed as causing significant damage, especially when symptoms were disbelieved or dismissed. Invalidation was the key theme with further themes of: Uncertainty, Medical (mis)communications and misunderstandings, Navigating health systems and Resilience and support. Although effective care and support was reported by some members, the negative impact of living with an incurable, life-changing disease was often exacerbated by perceived invalidation, uncertainty, and difficulties in multiple areas of members’ lives. Improved knowledge of the disease and greater support at all stages of the diagnostic journey could improve outcomes and quality of life for these patients.

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