Patient-reported time to diagnosis of neuroendocrine tumors (NETs) in Europe: results from the first global NET patient survey: a collaboration between the International Neuroendocrine Cancer Alliance (INCA) and Novartis

2015 ◽  
Author(s):  
Marianne Pavel ◽  
Teodora Kolarova ◽  
Grace Goldstein ◽  
John Leyden ◽  
Maia Sissons
Keyword(s):  
Neuroendocrine Tumors ◽  
Patient Survey ◽  
Neuroendocrine Cancer ◽  
Patient Reported ◽  
Time To Diagnosis

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 Patient Survey of the Physical, Emotional, and Informational Challenges for Patients Living with Neuroendocrine Tumors

2019 ◽  
Vol 8 (1) ◽  
pp. 67-80
Author(s):  
Mohid S. Khan ◽  
Katharina Mellar ◽  
Rupert Watts ◽  
Isabelle Bocher-Pianka ◽  
Abdelali Majdi ◽  
...  
Keyword(s):  
Neuroendocrine Tumors ◽  
Patient Survey

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.

Impact of Time to Diagnosis and Treatment in Head and Neck Cancer: A Systematic Review

2020 ◽  
Vol 162 (4) ◽  
pp. 446-457 ◽  
Author(s):  
Henrieke W. Schutte ◽  
Floris Heutink ◽  
David J. Wellenstein ◽  
Guido B. van den Broek ◽  
Frank J. A. van den Hoogen ◽  
...  
Keyword(s):  
Systematic Review ◽  
Head And Neck Cancer ◽  
Head And Neck ◽  
Laryngeal Cancer ◽  
Neck Cancer ◽  
Functional Outcomes ◽  
Cochrane Library ◽  
Symptomatic Disease ◽  
Patient Reported ◽  
Time To Diagnosis

Objective An increased interval between symptomatic disease and treatment may negatively influence oncologic and/or functional outcomes in head and neck cancer (HNC). This systematic review aims to provide insight into the effects of time to treatment intervals on oncologic and functional outcomes in oral cavity, pharyngeal, and laryngeal cancer. Data Sources PubMed, EMBASE, and Cochrane library were searched. Review Methods All studies on delay or time to diagnosis or treatment in oral, pharyngeal, and laryngeal cancer were included. Quality assessment was performed with an adjusted version of the Newcastle-Ottawa scale. Outcomes of interest were tumor volume, stage, recurrence, survival, patient-reported outcome measures (PROMs), toxicity, and functionality after treatment. Results A total of 51 studies were included. Current literature on the influence of delay in HNC is inconsistent but indicates higher stage and worse survival with longer delay. The effects on PROMs, toxicity, and functional outcome after treatment have not been investigated. The inconsistencies in outcomes were most likely caused by factors such as heterogeneity in study design, differences in the definitions of delay, bias of results, and incomplete adjustment for confounding factors in the included studies. Conclusion Irrespective of the level of evidence, the unfavorable effects of delay on oncologic, functional, and psychosocial outcomes are undisputed. Timely treatment while maintaining high-quality diagnostic procedures and decision making reflects good clinical practice in our opinion. This review will pose practical and logistic challenges that will have to be overcome.

scholarly journals What happens to patient experience when you want to see a doctor and you get to speak to a nurse? Observational study using data from the English General Practice Patient Survey

BMJ Open ◽  
2018 ◽  
Vol 8 (2) ◽  
pp. e018690 ◽  
Author(s):  
Charlotte A M Paddison ◽  
Gary A Abel ◽  
Jenni Burt ◽  
John L Campbell ◽  
Marc N Elliott ◽  
...  
Keyword(s):  
General Practice ◽  
Patient Experience ◽  
Secondary Analysis ◽  
Patient Survey ◽  
Models Of Care ◽  
Unintended Consequences ◽  
Multidisciplinary Teams ◽  
Face To Face ◽  
Patient Reported ◽  
Practice Patient

ObjectivesTo examine patient consultation preferences for seeing or speaking to a general practitioner (GP) or nurse; to estimate associations between patient-reported experiences and the type of consultation patients actually received (phone or face-to-face, GP or nurse).DesignSecondary analysis of data from the 2013 to 2014 General Practice Patient Survey.Setting and participants870 085 patients from 8005 English general practices.OutcomesPatient ratings of communication and ‘trust and confidence’ with the clinician they saw.Results77.7% of patients reported wanting to see or speak to a GP, while 14.5% reported asking to see or speak to a nurse the last time they tried to make an appointment (weighted percentages). Being unable to see or speak to the practitioner type of the patients’ choice was associated with lower ratings of trust and confidence and patient-rated communication. Smaller differences were found if patients wanted a face-to-face consultation and received a phone consultation instead. The greatest difference was for patients who asked to see a GP and instead spoke to a nurse for whom the adjusted mean difference in confidence and trust compared with those who wanted to see a nurse and did see a nurse was −15.8 points (95% CI −17.6 to −14.0) for confidence and trust in the practitioner and −10.5 points (95% CI −11.7 to −9.3) for net communication score, both on a 0–100 scale.ConclusionsPatients’ evaluation of their care is worse if they do not receive the type of consultation they expect, especially if they prefer a doctor but are unable to see one. New models of care should consider the potential unintended consequences for patient experience of the widespread introduction of multidisciplinary teams in general practice.

scholarly journals Improvements across a range of patient-reported domains with fremanezumab treatment: results from a patient survey study

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Dawn C. Buse ◽  
Sanjay K. Gandhi ◽  
Joshua M. Cohen ◽  
Verena Ramirez-Campos ◽  
Blaine Cloud ◽  
...  
Keyword(s):  
Patient Survey ◽  
Survey Study ◽  
Treatment Results ◽  
Patient Reported

scholarly journals Toward a Core Domain Set for Glucocorticoid Impact in Inflammatory Rheumatic Diseases: The OMERACT 2018 Glucocorticoid Impact Working Group

2019 ◽  
Vol 46 (9) ◽  
pp. 1179-1182 ◽  
Author(s):  
Jonathan T.L. Cheah ◽  
Rachel J. Black ◽  
Joanna C. Robson ◽  
Iris Y. Navarro-Millán ◽  
Sarah R. Young ◽  
...  
Keyword(s):  
Research Agenda ◽  
Patient Survey ◽  
Patient Reported Outcome ◽  
Inflammatory Rheumatic Diseases ◽  
Core Domain ◽  
Patient Reported ◽  
Literature Reviews ◽  
Rich Data ◽  
Validated Instrument ◽  
Core Domain Set

Objective.To understand the effects of glucocorticoids (GC), which are of importance to patients.Methods.The results of 2 literature reviews, a patient survey, and a qualitative study were presented.Results.No validated instrument exists to evaluate GC effect on patients. Survey data revealed skin thinning/bruising, sleep disturbance, and weight gain as the most frequent adverse effects. The qualitative research yielded rich data covering rapid benefits and physical and emotional consequences of GC.Conclusion.It was agreed that a patient-reported outcome to measure GC effect was required and a research agenda was developed for this goal.

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