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Identification and Recent Approaches for Evaluation, Operative Counseling, and Management in Patients With Freeman-Burian Syndrome: Principles for Global Treatment.
J Craniofac Surg 2019 Nov-Dec; 30(8):2502-2508JC

Abstract

For many, the experience of a complex craniofacial malformation condition, such as Freeman-Burian syndrome (FBS), formerly Freeman-Sheldon syndrome, is deeply distressing. There are few references in the literature addressing initial evaluation and operative counseling for FBS, and guidance is absent. Two major outcomes of FBS are explored, namely diagnostic accuracy and therapeutic result, to identify factors influencing optimal clinical care in (1) diagnosis, (2) evaluation, (3) general and craniofacial operative counseling, and (4) craniofacial management.PubMed searches have yielded 15 results describing craniofacial surgery in FBS and 29 manuscripts describing psychosocial aspects of surgery and patient and family counseling and education in other non-intellectually impairing craniofacial malformation conditions. Research in this area of scholarship is plagued by problems, especially considerable knowledge gaps and an absence of study data for operative outcomes. As a result, the literature remains unsettled, though our experience presents a much more clear picture of the clinical reality for this challenging patient population. While many challenges and limitations to treatment are present, much can be done to afford these patients a good and productive quality of life through operative intervention and longitudinal psychosocial support.

Authors+Show Affiliations

Department of Surgery, Georgetown University, Washington, DC.No affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31567769

Citation

Poling, Mikaela I., et al. "Identification and Recent Approaches for Evaluation, Operative Counseling, and Management in Patients With Freeman-Burian Syndrome: Principles for Global Treatment." The Journal of Craniofacial Surgery, vol. 30, no. 8, 2019, pp. 2502-2508.
Poling MI, Dufresne CR, Portillo AL. Identification and Recent Approaches for Evaluation, Operative Counseling, and Management in Patients With Freeman-Burian Syndrome: Principles for Global Treatment. J Craniofac Surg. 2019;30(8):2502-2508.
Poling, M. I., Dufresne, C. R., & Portillo, A. L. (2019). Identification and Recent Approaches for Evaluation, Operative Counseling, and Management in Patients With Freeman-Burian Syndrome: Principles for Global Treatment. The Journal of Craniofacial Surgery, 30(8), pp. 2502-2508. doi:10.1097/SCS.0000000000005968.
Poling MI, Dufresne CR, Portillo AL. Identification and Recent Approaches for Evaluation, Operative Counseling, and Management in Patients With Freeman-Burian Syndrome: Principles for Global Treatment. J Craniofac Surg. 2019;30(8):2502-2508. PubMed PMID: 31567769.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Identification and Recent Approaches for Evaluation, Operative Counseling, and Management in Patients With Freeman-Burian Syndrome: Principles for Global Treatment. AU - Poling,Mikaela I, AU - Dufresne,Craig R, AU - Portillo,Augusto L, PY - 2019/10/1/pubmed PY - 2019/10/1/medline PY - 2019/10/1/entrez SP - 2502 EP - 2508 JF - The Journal of craniofacial surgery JO - J Craniofac Surg VL - 30 IS - 8 N2 - For many, the experience of a complex craniofacial malformation condition, such as Freeman-Burian syndrome (FBS), formerly Freeman-Sheldon syndrome, is deeply distressing. There are few references in the literature addressing initial evaluation and operative counseling for FBS, and guidance is absent. Two major outcomes of FBS are explored, namely diagnostic accuracy and therapeutic result, to identify factors influencing optimal clinical care in (1) diagnosis, (2) evaluation, (3) general and craniofacial operative counseling, and (4) craniofacial management.PubMed searches have yielded 15 results describing craniofacial surgery in FBS and 29 manuscripts describing psychosocial aspects of surgery and patient and family counseling and education in other non-intellectually impairing craniofacial malformation conditions. Research in this area of scholarship is plagued by problems, especially considerable knowledge gaps and an absence of study data for operative outcomes. As a result, the literature remains unsettled, though our experience presents a much more clear picture of the clinical reality for this challenging patient population. While many challenges and limitations to treatment are present, much can be done to afford these patients a good and productive quality of life through operative intervention and longitudinal psychosocial support. SN - 1536-3732 UR - https://www.unboundmedicine.com/medline/citation/31567769/Identification_and_Recent_Approaches_for_Evaluation,_Operative_Counseling,_and_Management_in_Patients_With_Freeman-Burian_Syndrome:_Principles_for_Global_Treatment L2 - http://Insights.ovid.com/pubmed?pmid=31567769 DB - PRIME DP - Unbound Medicine ER -