ABSTRACT
OBJECTIVES: The aims of the study were to assess the effects of breakthrough carcinoid syndrome symptoms on well-being in neuroendocrine tumor (NET) patients insufficiently controlled on long-acting somatostatin analog (SSA) and to assess patient experience with treatment options, physician communication, and disease information sources. METHODS: This study surveyed US NET patients from 2 online communities, experiencing at least one symptom, by utilizing a 64-item questionnaire. RESULTS: One hundred patients participated: 73% female, 75% age 56 to 75 years, and 93% White. Primary tumor distribution was as follows: gastrointestinal NET (n = 55), pancreatic NET (n = 33), lung NET (n = 11), and other NET (n = 13). All patients were actively treated with one long-acting SSA and experiencing breakthrough symptoms: diarrhea, flushing, or other (13% experienced one, 30% two, 57% greater than two). More than one third of treated patients experienced carcinoid-related symptoms daily. Sixty percent of respondents reported not having short-acting "rescue" treatment available, impacting well-being though anxiety or depression (45%), trouble exercising (65%), sleeping (57%), employment (54%), and maintaining friendships (43%). CONCLUSIONS: Breakthrough symptoms remain an unmet need, even in treated patients with NETs. Though still relying on physicians, NET patients are now also using the Internet. Improved awareness of optimal SSA use may improve syndrome control.
Subject(s)
Carcinoid Tumor , Intestinal Neoplasms , Malignant Carcinoid Syndrome , Neuroendocrine Tumors , Humans , Female , Middle Aged , Aged , Male , Neuroendocrine Tumors/complications , Neuroendocrine Tumors/diagnosis , Neuroendocrine Tumors/drug therapy , Malignant Carcinoid Syndrome/diagnosis , Malignant Carcinoid Syndrome/drug therapy , Carcinoid Tumor/diagnosis , Carcinoid Tumor/therapy , Somatostatin/therapeutic useABSTRACT
Dr. Howard Koh, Former Assistant Secretary of Health and Human Services (HHS explained, "While [health literacy] may not necessarily attract headlines, it is absolutely at the core of everything we do as health care ... professionals." Yet making health information that is searched for on the Internet accessible means not only reducingjargon but also reducing volume. Personalization is one answer that Medivizor, a start-up featured in Forbes, has developed to answer the need. Hospitals and providers partner with Medivizor to improve the health literacy of patients, enhancing engagement and collaborative decision-making.
