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Table 6 Recommendations for communicating the diagnosis

From: Consensus based recommendations for diagnosis and medical management of Poland syndrome (sequence)

  Grade Consensus agreement
R6.28 In the communication of the diagnosis it is important to underline that PS is not progressive congenital anomaly and does not associate with abnormal psychomotor development. Definitely useful/strong literature 92,9%
R6.29 In cases without severe thoracic malformation, the communication of the diagnosis should include a statement on the survival rate which is comparable with the general population. Definitely useful/strong literature 100%
R6.30 As PS is an exclusion diagnosis, the parents and family should be informed on the need of waiting the results of all requested investigations before fixing the diagnosis. Definitely useful/strong literature 84,6%
R6.31 The communication of the diagnosis should be made in the presence of a psychologist. If the psychological support is not available at the time of the diagnosis an external psychological should be advised. Definitely useful/strong literature 90,9%
R6.32 Contacts of the most appropriate specialist(s) for surgery must be given to the patients/families during the diagnosis and the follow-up. They should be also informed about available local, national and international support groups and/or patients associations Definitely useful/strong literature 92,9%