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% |