Perceptions of Outcomes of Implant Therapy in Patients with Ectodermal Dysplasia Syndromes

Purpose: The purpose of this study was to evaluate patient-specific outcomes and satisfaction using dental implants in a population affected with ectodermal dysplasia. Materials and Methods: Patient-based data were collected using a self-reported survey instrument sent to patients belonging to a private patient foundation and/or treated previously at a government clinic. A standardized survey instrument was developed to evaluate patient satisfaction, outcomes, and potential complications using dental implants. Results: The survey instrument was mailed to 253 affected individuals self-reported to have various forms of ectodermal dysplasia and who were voluntarily participants in the National Foundation for Ectodermal Dysplasias and/or were participants in the US National Institute for Dental Craniofacial Research Intramural Ectodermal Dysplasia clinical research program. A total of 109 responses were obtained (43% response rate). The duration following completion of implant therapy ranged from to 1 to 23 years. Of the 109 participants, 50% reported either an implant or prosthetic complication with implant treatment, and 24% reported some form of failure with implant therapy. However, 91% of participants reported being either satisfied or very satisfied with dental implants, and 95% reported that the treatment was worth the time and cost. Conclusions: Affected individuals receiving tooth replacement therapy with dental implants reported satisfaction with the outcome. A higher level of complications, including infection, mechanical problems, and implant loss, relative to the unaffected population was reported.