Table 1 Clinical outcomes used as indicators to assess the performance of surgical services
From: Monitoring clinical quality in rare disease services – experience in England
Condition or Intervention | Outcome measure |
|---|---|
Bladder exstrophy | Immediate complications |
Bone cancer | Three-year local recurrence |
Adult Ventricular Assist Devices (Bridge to heart transplant) | Survival |
Child Ventricular Assist Devices/Extracorporeal Membrane Oxygenation (ECMO) (Bridge to heart transplant) | Deaths |
Complex tracheal disease | Deaths, Re-intervention, Stents, Repeated outpatient attendances, Repeated inpatient attendances. |
Craniofacial surgery | Appropriate measure not clear |
Extracorporeal Membrane Oxygenation (ECMO) (adult) | Survival without severe disability at 6 months |
Extracorporeal Membrane Oxygenation (ECMO) (neonate & infants, children) | Survival to discharge |
Malformation of female genital tract | Research study published: 20-year outcome on sexual function [22]. |
Ocular oncology | Loss of eye (primary and secondary enucleation); Local recurrence. |
Oculo-odonto-kerato-prosthesis | Visual acuity |
Pseudomyxoma of peritoneum | Complications, median survival |
Pulmonary thromboendarterectomy | In-hospital mortality |
Retinoblastoma | Deaths; Loss of eye (primary and secondary enucleation); Metastasis. |
Severe Combined Immunodeficiency | Deaths |
Transplant – heart | Mortality at 30 days after transplant; Survival one and five years after transplant |
Transplant – liver | Mortality at 90 days after transplant; Survival five years after transplant |
Transplant – lung | Mortality at 90 days after transplant; Survival one and five years after transplant |
Transplant – pancreas | Mortality at 90 days after transplant; Survival five years after transplant |
Transplant – small bowel | Mortality at 90 days after transplant; Survival five years after transplant |
Vein of Galen malformation | Deaths and disability |