Tags

Type your tag names separated by a space and hit enter

Epidemiology, prevention, diagnosis, treatment, and outcomes for psychosocial problems in patients and families affected by non-intellectually impairing craniofacial malformation conditions: a systematic review protocol of qualitative data.
Syst Rev 2019; 8(1):127SR

Abstract

BACKGROUND

Physical attractiveness or unattractiveness wields a tremendous impact on the social and psychological components of life. Many individuals with facial deformities are treated more negatively than normal individuals, which may affect their self-image, quality of life, self-esteem, interpersonal encounters, and ultimately, success in life. Malformations that do not create physiological problems and whose major health impact is to degrade physical attractiveness and engender psychosocial consequences are insufficiently understood and not considered functional problems by medical insurance companies.

METHODS/DESIGN

As part of a clinical practice guideline development process for psychosocial concerns in Freeman-Burian syndrome, manuscripts describing psychosocial considerations related to the presence of non-intellectually impairing craniofacial malformation conditions or associated clinical activities are sought, especially focusing on epidemiology, prevention, symptoms, diagnoses, severity, timing, treatment, consequences, and outcomes. All published papers on this topic are considered in searching PubMed, OVID MEDLINE, and CINAHL Complete and again before final analyses. The results will be written descriptively to be practically useful and structured around the type or timing of psychosocial problems or consequences described or target population characteristics. No meta-analysis is planned.

DISCUSSION

Because the quality of research on psychosocial problems in craniofacial malformation conditions is known to be fraught with methodological problems, inconsistencies, and considerable knowledge gaps, we anticipate difficulties, which may limit the review questions able to be answered. We hope to produce a survey relevant to all non-intellectually impaired craniofacially deformed patients and their families and outline knowledge gaps and prioritise areas for clinical investigation.

SYSTEMATIC REVIEW REGISTRATION

PROSPERO CRD42018093021: UNIVERSAL TRIAL NUMBER: U1111-1211-8153.

Authors+Show Affiliations

, Buckhannon, USA. poling_mi@fsrgroup.org., Buckhannon, USA.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31133050

Citation

Poling, Mikaela I., and Craig R. Dufresne. "Epidemiology, Prevention, Diagnosis, Treatment, and Outcomes for Psychosocial Problems in Patients and Families Affected By Non-intellectually Impairing Craniofacial Malformation Conditions: a Systematic Review Protocol of Qualitative Data." Systematic Reviews, vol. 8, no. 1, 2019, p. 127.
Poling MI, Dufresne CR. Epidemiology, prevention, diagnosis, treatment, and outcomes for psychosocial problems in patients and families affected by non-intellectually impairing craniofacial malformation conditions: a systematic review protocol of qualitative data. Syst Rev. 2019;8(1):127.
Poling, M. I., & Dufresne, C. R. (2019). Epidemiology, prevention, diagnosis, treatment, and outcomes for psychosocial problems in patients and families affected by non-intellectually impairing craniofacial malformation conditions: a systematic review protocol of qualitative data. Systematic Reviews, 8(1), p. 127. doi:10.1186/s13643-019-1045-1.
Poling MI, Dufresne CR. Epidemiology, Prevention, Diagnosis, Treatment, and Outcomes for Psychosocial Problems in Patients and Families Affected By Non-intellectually Impairing Craniofacial Malformation Conditions: a Systematic Review Protocol of Qualitative Data. Syst Rev. 2019 May 27;8(1):127. PubMed PMID: 31133050.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Epidemiology, prevention, diagnosis, treatment, and outcomes for psychosocial problems in patients and families affected by non-intellectually impairing craniofacial malformation conditions: a systematic review protocol of qualitative data. AU - Poling,Mikaela I, AU - Dufresne,Craig R, Y1 - 2019/05/27/ PY - 2018/06/03/received PY - 2019/05/13/accepted PY - 2019/5/29/entrez PY - 2019/5/28/pubmed PY - 2019/5/28/medline KW - Body physical appearance KW - Craniofacial abnormalities KW - Craniofacial deformities KW - Freeman-Sheldon syndrome KW - Interpersonal relations KW - Reconstructive surgical procedures KW - Self-concept KW - Social adjustment KW - Social support KW - Whistling face syndrome SP - 127 EP - 127 JF - Systematic reviews JO - Syst Rev VL - 8 IS - 1 N2 - BACKGROUND: Physical attractiveness or unattractiveness wields a tremendous impact on the social and psychological components of life. Many individuals with facial deformities are treated more negatively than normal individuals, which may affect their self-image, quality of life, self-esteem, interpersonal encounters, and ultimately, success in life. Malformations that do not create physiological problems and whose major health impact is to degrade physical attractiveness and engender psychosocial consequences are insufficiently understood and not considered functional problems by medical insurance companies. METHODS/DESIGN: As part of a clinical practice guideline development process for psychosocial concerns in Freeman-Burian syndrome, manuscripts describing psychosocial considerations related to the presence of non-intellectually impairing craniofacial malformation conditions or associated clinical activities are sought, especially focusing on epidemiology, prevention, symptoms, diagnoses, severity, timing, treatment, consequences, and outcomes. All published papers on this topic are considered in searching PubMed, OVID MEDLINE, and CINAHL Complete and again before final analyses. The results will be written descriptively to be practically useful and structured around the type or timing of psychosocial problems or consequences described or target population characteristics. No meta-analysis is planned. DISCUSSION: Because the quality of research on psychosocial problems in craniofacial malformation conditions is known to be fraught with methodological problems, inconsistencies, and considerable knowledge gaps, we anticipate difficulties, which may limit the review questions able to be answered. We hope to produce a survey relevant to all non-intellectually impaired craniofacially deformed patients and their families and outline knowledge gaps and prioritise areas for clinical investigation. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018093021: UNIVERSAL TRIAL NUMBER: U1111-1211-8153. SN - 2046-4053 UR - https://www.unboundmedicine.com/medline/citation/31133050/Epidemiology_prevention_diagnosis_treatment_and_outcomes_for_psychosocial_problems_in_patients_and_families_affected_by_non_intellectually_impairing_craniofacial_malformation_conditions:_a_systematic_review_protocol_of_qualitative_data_ L2 - https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-019-1045-1 DB - PRIME DP - Unbound Medicine ER -