Providing information to patients with a rare cancer: using Internet discussion forums to address the needs of patients with medullary thyroid carcinoma.

From LO-Wiki

Listowner > A nontraditional cancer support group. The Internet. > Do otolaryngology out-patients use the internet prior to attending their appointment? > Methodological issues in the recruitment of ethnic minority subjects to research via the Internet: a discussion paper. > Providing information to patients with a rare cancer: using Internet discussion forums to address the needs of patients with medullary thyroid carcinoma.

1: Clin J Oncol Nurs. 2002 Jul-Aug;6(4):219-22.

[edit] Providing information to patients with a rare cancer: using Internet discussion forums to address the needs of patients with medullary thyroid carcinoma.

Schultz PN.

pschultz@mdanderson.org

Medullary thyroid carcinoma (MTC) is a rare disease, and specific experience with the condition is not commonly found outside of major cancer centers. Because of the rarity and slow-growing natural history of the disease, patients with MTC frequently have many questions concerning prognosis, treatment, and follow-up care. Many of these patients have joined an e-mail group on the Internet through which they share information and concerns. The author has joined this group and shares her expert clinical knowledge about the disease. When individuals are armed with accurate and expert information, they can make informed decisions. The source of this information can be diverse. Nurses with expert knowledge can use opportunities such as e-mail groups to answer questions and respond openly about subjects about which they have unique perspectives.

PMID: 12087618 [PubMed - indexed for MEDLINE]