Perspectives of Patients With Dermatofibrosarcoma Protuberans on Diagnostic Delays, Surgical Outcomes, and Nonprotuberance.

ABSTRACT:

Importance

Dermatofibrosarcoma protuberans (DFSP) may have a deceptively benign clinical appearance, including a nonprotuberant presentation. Patients with DFSP often perceive misdiagnoses and delays in receiving a diagnosis. Use of existing, patient-designed Facebook patient support groups (FBSGs) to recruit large numbers of patients with rare diseases may be an effective novel research method.

Objectives

To collaborate with patients with rare disease through social media and answer questions important to both patients and the medical field, including sources of diagnostic delay, risk of recurrence, and flat presentation of DFSP.

Design, setting, and participants

A multiple-choice survey created by a team of medical practitioners and patients with DFSP was administer

SUBMITTER: David MP 

PROVIDER: S-EPMC6724159 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature