Perspectives of Patients With Dermatofibrosarcoma Protuberans on Diagnostic Delays, Surgical Outcomes, and Nonprotuberance
| العنوان: | Perspectives of Patients With Dermatofibrosarcoma Protuberans on Diagnostic Delays, Surgical Outcomes, and Nonprotuberance |
|---|---|
| المؤلفون: | Lori Hoffman, Marjorie Parker David, Pip M. Caliskan, Gayle Dicker, Rebecca Brown, Ashley E Funderburg, Jerad M. Gardner, Tammi Horne, Lee Cove, James P. Selig |
| المصدر: | JAMA Network Open |
| بيانات النشر: | American Medical Association (AMA), 2019. |
| سنة النشر: | 2019 |
| مصطلحات موضوعية: | Adult, Male, medicine.medical_specialty, Delayed Diagnosis, Skin Neoplasms, medicine.medical_treatment, MEDLINE, Risk Assessment, Surveys and Questionnaires, medicine, Dermatofibrosarcoma protuberans, Mohs surgery, Humans, Diagnostic Errors, Protein Kinase Inhibitors, Original Investigation, Radiotherapy, business.industry, Research, Wide local excision, General surgery, Dermatofibrosarcoma, Clinical appearance, General Medicine, Middle Aged, Mohs Surgery, medicine.disease, Online Only, Interdisciplinary Placement, Self-Help Groups, Treatment Outcome, Oncology, Imatinib Mesylate, Female, Neoplasm Recurrence, Local, Presentation (obstetrics), Risk assessment, business, Social Media, Rare disease |
| الوصف: | Key Points Question Can dermatofibrosarcoma protuberans Facebook patient support groups work with researchers to determine risk of recurrence and metastasis, surgical outcomes, symptoms of recurrence, and sources of diagnostic delay? Findings In this multiple-choice survey study, 214 patients with dermatofibrosarcoma protuberans reported a median of 4 years between noticing a lesion and receiving a correct diagnosis (range 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 administered to 214 patients with DFSP or family members from international DFSP FBSGs and a nonprofit foundation patient database via Lime Survey from October 30 to November 20, 2015. The survey asked questions designed to determine risk of recurrence and metastasis, surgical outcomes, sources of diagnostic delay, symptoms of recurrence, number of recurrences, scar size, and number of clinicians seen before biopsy. Statistical analysis was performed from January 1, 2016, to April 1, 2019. Main Outcomes and Measures The study goal was to collect at least 200 survey responses. Results Of 214 survey respondents (169 females and 45 males; mean [SD] age, 40.7 [12.1] years; range This survey study collaborates with patients with dermatofibrosarcoma protuberans through social media to evaluate sources of diagnostic delay, risk of recurrence, and flat presentation of dermatofibrosarcoma protuberans. |
| تدمد: | 2574-3805 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::70d4ef2f73c5a92dbb01de15c60066bbTest https://doi.org/10.1001/jamanetworkopen.2019.10413Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....70d4ef2f73c5a92dbb01de15c60066bb |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 25743805 |
|---|