Table 4 Requirements for comprehensive care in the management of hereditary angioedema patients
Best Clinical Treatment outcomes including: | |
a. | A comprehensive care team made up of nurse coordinator, clinician, social worker, data manager, pain management specialist, genetic counsellor, and administrative support; |
b. | Access to specialized diagnostic testing; |
c. | Access to home treatment; |
d. | A networked Patient Information System to facilitate product recalls - collect data on therapy outcome measures and safety, and facilitate participation in clinical trials |
e. | Access to clinical advances as they become available; |
f. | Access to 24Â hour support; |
g. | Access to up-to-date standards of care, including standardized wallet cards; |
h. | Tracking and intermittent audit of quality outcomes including beneficial and adverse outcomes through secure, comprehensive and networked data management. |
Education of patients and staff regarding: | |
a. | Responsible Self/Family Care (home care model) with home and self-infusion/administration instruction and support; |
b. | Developments in the cause, diagnosis, treatment, outcomes, and prognosis of HAE |
c. | Changes in the administrative management of the clinic |
An environment conducive to research including: | |
a. | Access to and support for clinical trials of new treatments; |
b. | Access to and support for translational research in diagnosis and prognosis; |
c. | Access to and support for psychosocial research such as quality of life studies. |
An advisory or oversight board with patient group representation for each clinic | |