Dataset Information

Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors: Results From a Large Patient Survey in the United States.

ABSTRACT:

Objectives

The aim of this survey was to examine the experience of patients with neuroendocrine tumors (NETs) to raise awareness of the NET-related burden and identify unmet needs. Here, we report data from patients in the United States.

Methods

Patients with NETs participated in a 25-minute anonymous survey, conducted primarily online from February to May 2014. Survey questions captured information on sociodemographics, clinical characteristics, NET diagnostic experience, disease impact/management, interaction with medical teams, and NETs knowledge/awareness.

Results

Of 1928 patients who participated globally, the largest percentage was from the United States (39%). Approximately 50% of US patients reported being diagnosed with other conditions before receiving their NET diagnosis, which for 34% took 5 years or more. Patients experienced many symptoms on a daily basis as a result of NETs, which had a substantial negative impact on their work and daily lives. Numerous improvements were suggested by patients, including better access to NET-specific treatments and medical teams/centers and better education for the management of disease-related and treatment-related symptoms.

Conclusions

This survey demonstrated the significant burden of NETs on patients' lives and identified key areas for improvement in diagnosis and long-term management, including better access to NET-specific treatments and specialist medical teams/centers.

SUBMITTER: Wolin EM

PROVIDER: S-EPMC5404397 | biostudies-literature | 2017 May/Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors: Results From a Large Patient Survey in the United States.

Wolin Edward M EM Leyden John J Goldstein Grace G Kolarova Teodora T Hollander Ron R Warner Richard R P RRP

Pancreas 20170501 5

<h4>Objectives</h4>The aim of this survey was to examine the experience of patients with neuroendocrine tumors (NETs) to raise awareness of the NET-related burden and identify unmet needs. Here, we report data from patients in the United States.<h4>Methods</h4>Patients with NETs participated in a 25-minute anonymous survey, conducted primarily online from February to May 2014. Survey questions captured information on sociodemographics, clinical characteristics, NET diagnostic experience, disease ...[more]

PMID: 28328615

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Dataset Information

Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors: Results From a Large Patient Survey in the United States.

Objectives

Methods

Results

Conclusions

Publications

Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors: Results From a Large Patient Survey in the United States.

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