Patient reported experience of the burden of neuroendocrine tumors and impact of eSHINE Patient Support Program on patient quality of life

AbstractThe Fingolimod Patient Support Program (F-PSP) is an interprofessional specialty pharmacy service designed to ensure responsible use of fingolimod by promoting patient safety and medication adherence. This study aims to evaluate the safety and medication adherence of patients who joined the F-PSP between 2013 and 2016. Sociodemographic and medical characteristics, patient safety data (patient-reported symptoms, discontinuations due to adverse events (AEs), repeated first-dose monitoring), and medication adherence (implementation, persistence, reasons for discontinuation, influence of covariates, barriers and facilitators) were described. Sixty-seven patients joined the F-PSP. Patients reported a high frequency of symptoms. Due to AEs, 7 patients discontinued fingolimod, 3 took therapeutic breaks, and 1 reduced the regimen temporarily. Three patients repeated the first-dose monitoring. Patients had a high medication adherence over the 18-month analysis period: implementation decreased from 98.8 to 93.7%, and fingolimod persistence was 83.2% at 18 months. The patients’ level of education, professional situation, and living with child(ren) influenced implementation. Patients reported more facilitators of medication adherence than barriers. The F-PSP seems valuable for supporting individual patients (ensuring responsible use of fingolimod and inviting patients for shared-decision making) and public health (indirectly gathering real-world evidence).

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Patient-Reported Outcomes and Quality of Life with Sunitinib Versus Placebo for Pancreatic Neuroendocrine Tumors: Results From an International Phase III Trial

Targeted Oncology ◽

10.1007/s11523-016-0462-5 ◽

2016 ◽

Vol 11 (6) ◽

pp. 815-824 ◽

Cited By ~ 19

Author(s):

Aaron Vinik ◽

Andrew Bottomley ◽

Beata Korytowsky ◽

Yung-Jue Bang ◽

Jean-Luc Raoul ◽

...

Keyword(s):

Quality Of Life ◽

Neuroendocrine Tumors ◽

Patient Reported Outcomes ◽

Phase Iii ◽

Pancreatic Neuroendocrine Tumors ◽

Phase Iii Trial ◽

Patient Reported

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

JCO Clinical Cancer Informatics ◽

10.1200/cci.19.00025 ◽

2019 ◽

pp. 1-10 ◽

Cited By ~ 1

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.

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PUK25 PATIENT-REPORTED OUTCOMES AND HEALTH CARE UTILIZATION FOLLOWING PARTICIPATION IN A PATIENT SUPPORT PROGRAM FOR INTERMITTENT CATHETERIZATION

Value in Health ◽

10.1016/j.jval.2019.04.1879 ◽

2019 ◽

Vol 22 ◽

pp. S385

Author(s):

J. Zhao ◽

A.M. Carlson ◽

L. Neal-Herman ◽

J. Obeid ◽

A. Au ◽

...

Keyword(s):

Health Care ◽

Health Care Utilization ◽

Patient Reported Outcomes ◽

Support Program ◽

Intermittent Catheterization ◽

Care Utilization ◽

Patient Support ◽

Patient Support Program ◽

Patient Reported

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Implementation and Effectiveness of an Interprofessional Support Program for Patients with Type 2 Diabetes in Swiss Primary Care: A Study Protocol

Pharmacy ◽

10.3390/pharmacy8020106 ◽

2020 ◽

Vol 8 (2) ◽

pp. 106

Author(s):

Noura Bawab ◽

Joanna C. Moullin ◽

Clémence Perraudin ◽

Olivier Bugnon

Keyword(s):

Type 2 Diabetes ◽

Primary Care ◽

Large Scale ◽

Quantitative Methods ◽

Implementation Process ◽

Support Program ◽

Patient Support ◽

Patient Support Program ◽

Patient Reported

This research protocol illustrates the use of implementation science to support the development, dissemination and integration in primary care of effective and sustainable collaborative pharmacy services for chronic care management. The objective is to evaluate the implementation and the effectiveness of a pharmacist-led patient support program including regular motivational interviews; medication adherence, patient-reported outcomes, and clinical outcomes monitoring; and interactions with physicians, for patients with type 2 diabetes taking at least one oral antidiabetic medication in the French-speaking part of Switzerland. This is a prospective, multi-centered, observational, cohort study using a hybrid design to assess the patient support program. The evaluation includes three levels of analysis: (1) the implementation strategies, (2) the overall implementation process, and (3) the effectiveness of the program. Qualitative and quantitative methods are used, and outcomes are assessed at each stage of the implementation process: exploration, preparation, operation, and sustainability. This research project will provide key insights into the processes of implementing patient support programs on a large scale and adapting the traditional community pharmacy practices towards the delivery of person-centered and collaborative services.

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Communicating Oncologic Prognosis with Empathy (COPE) Pilot Study.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.11613 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. 11613-11613

Author(s):

Boone W. Goodgame ◽

Farya Phillips ◽

Wenhui Vivian Zhang ◽

Barbara L. Jones

Keyword(s):

Quality Of Life ◽

Advanced Cancer ◽

Healthcare Team ◽

Patient Support ◽

Patient Centered ◽

Incurable Cancer ◽

Patient Reported ◽

Post Test ◽

Perception Survey

11613 Background: Multiple studies show that patients with advanced cancer often believe the goal of treatment is cure. Our interprofessional team designed the Communicating Oncologic Prognosis with Empathy (COPE) guide to enhance communication for patients, families, and the healthcare team. This unique, single-page tool allows treating physicians to estimate prognosis for patients, including likelihood of living 6 mo, 1y, 2y, and 5y, with or without treatment. Methods: Patients with incurable cancer were enrolled at one oncology clinic. Using a pre/post-test design, participants completed the validated prognosis and treatment perception survey (PTPQ) then met with their oncologist. The COPE guide was used for the discussion and the patient received a copy of the completed COPE. The COPE guide was placed in the patient chart and the healthcare team (social work, spiritual care etc.) used it to provide patient support and explore the patient’s response to the information. Post-test was completed 4-8 weeks later. Qualitative exit interviews were used to assess patient reported impact on communication with medical team, caregivers and family, and quality of life. Results: 43 patients were enrolled and 25 completed all study measures. All patients had advanced cancer with 96% of patients (24) extremely unlikely to be cured ( < 1% chance). Oncologist’s treatment goals were better quality of life and longer life. All participants completing the study found the communication guide helpful, scoring 9-10 out of 10. 95% of patients enrolled wanted to hear details about their prognosis. Pre-intervention, 28% (7) of patients reported their primary goal of treatment as cure (n = 7; 28%) or to extend life as long as possible (n = 7; 28%). Pre-intervention, patient’s perceptions of their oncologist’s goals of treatment were cure (n = 11; 44%) or extend life (n = 8; 32%). At post-test, 8% of participants (2) inaccurately reported goal of treatment as cure (p < 0.05). Conclusions: These findings highlight major gaps in patients’ understanding of their prognosis. COPE is a promising mechanism to enhance patient-centered communication about prognosis and treatment for patients with incurable cancer.

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