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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