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Immunology and Allergy Services in Scotland

APPENDIX VI

STANDARDS OF CARE FOR PRIMARY IMMUNODEFICIENCY

All patients in whom there is a definite or suspected antibody deficit should be referred to a specialist immunologist.

Patients must have a full immunological assessment prior to immunoglobulin treatment. Most patients will require treatment.

Most consultant immunologists prefer to start therapy in their own centre where specialist immunology nurses can assist with the management of patients. A high proportion of patients can join a recognised self-infusion immunoglobulin programme (Home Therapy). Those who are unsuitable may be referred back to their local hospital for maintenance immunoglobulin replacement therapy which will be supervised by the specialist immunology nurse. The treatment of these patients is assessed regularly at the specialist centre. Some patients also need continued advice from their organ-based specialist.

Immunologists should continue to review patients regularly on an out-patient basis to assess progress and to watch for possible complications. Shared care between the immunologist and the district physician or paediatrician and general practitioner will always be necessary and is essential if the patient lives a long way from the immunology centre. Patient or parent-held records are recommended to ensure good communication. These should not be a substitute for physician-held records. Patients with a classical immunodeficiency history, in whom investigations are normal at the time of the initial study, require specialist follow-up.

The patient, general practitioner, district nurse and referring consultant should be sent appropriate literature on primary antibody deficiencies.

Self-infusion of immunoglobulin (Home Therapy) can be safely undertaken. There are guidelines for the implementation of Home Therapy. Patients must be formally trained in a recognised centre. Self-infusion at home brings benefits to the patient in terms of avoiding travel to the hospital centre and time off work, greater self-esteem and confidence. Home therapy has also been shown to be a much less expensive option than hospital-based infusions. In England and Wales there are 379 patients trained for home IVIg therapy. This includes 8 patients resident in Scotland. There are two patients in Scotland on locally organised and delivered home IVIg therapy.

Adapted from: The Royal College of Pathologists / The Royal College of Physicians / The Primary Immunodeficiency Association. Consensus Document for the Diagnosis and Management of Patients with Primary Antibody Deficiencies. Royal College of Pathologists. London, 1995.

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