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  • TEC14: What kind of training and information should be provided for the patients who uses IVIG o for their families?
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What kind of training and information should be provided for the patients who uses IVIG o for their families?

Authors: Jesús González-Enríquez, Nadine Berndt, Houria Mouas

Internal reviewers: Romana Tandara Haček, Mirjana Huic, Anna-Theresa Renner

Refer to domain search and domain methodology section.

Patients should be eligible for IVIGs only in case they give consent for transfusion of blood and/or blood products. One or several patient and/or family education sessions may be required to inform patients and/or his or her family about what IVIG are and what they are used for, the fact that IVIGs are not licensed for use in the treatment of Alzheimers’ disease and mild-cognitive-impairment (off-label use), what one needs to know before using IVIGs, how and how often it is administered, the approximate duration of each infusion times depending on the patient’s assigned dose and body mass, potential risks and benefits of its use, the potential of virus transmissions, contra-indications (e.g. deficiency of Immunoglobulin A with anti-IgA antibodies, anaphylactic reaction) and contra-indications with other medications, so that informed consent may be obtained {Relkin NR, 2009; Gysler M, 2012}{13,48}. Information about such things as new modalities of treatment, legislative initiatives and insurance issues may also be valuable. Patients and their families should equally be provided with written information brochures concerning the IVIGs. A risk assessment may be carried out to ensure the patient and/or his/her family understand the need for treatment and how it is administered.

In case patients (and their family) agree upon an IVIG treatment, they should be informed about the fact that just as each patient may require a different IVIG, each may also require an individualized infusion regimen in order to achieve the desired outcome. IVIG is given through an intravenous infusion at an individualized rate, dose and time. If the treatment is successful, it may be repeated. At present IVIG is usually only given in hospital, thus no training and training materials need to be provided to the patient for using IVIG. However, in case patients may be able to receive IVIG for treating Alzheimer’s disease or mild-cognitive-impairment subcutaneously in the future, the patients (depending upon their cognitive functioning) or their caregivers might be able to administer the product outside the hospital setting. This will be especially the case for those patients who are receiving IVIG without adverse events or with mild adverse reactions that can easily be managed {American Academy of Allergy Asthma & Immunology, 2011}{49}. In that case special training should be provided to patients and their families about how subcutaneous IVIG should be given in a safe and aseptic manner, including associated risks and benefits. In any administration of IVIG, another important education topic is ensuring that the patient and his/her family understand adverse reactions and/or its signs and complications, as well as how to react to adverse reactions. The possibility of rare adverse events such as stroke, thrombotic events and acute renal failure, which have been reported with IVIG should be discussed {Dodel R, 2010, Patwa HS, 2012; ACT Health, 2013} {9,27,33}. Patients over 65 years of age with particular co-morbidities are mostly at risk for adverse events. In these patients, there should be special attention for the potential risks and benefits of IVIG weighed against those of alternative therapies {Baxter, 2011}{36}. In case of the existence of an augmented risk, patients should know that they will be administered with IVIG products at the minimum concentration available and the minimum rate of infusion practicable. Life attenuated vaccines should be deferred up to three months after the administration of IVIG. Patients receiving measles vaccine should have their antibody status checked. {ACT Health, 2013}{36}. The ability to drive and operate machines may be impaired by some adverse reactions associated with IVIGs. Patients who experience adverse reactions during treatment should wait for these to resolve before driving or operating machines. Last but not least, a consent form documenting agreement to undergo treatment with IVIG and discussion of potential adverse effects must be completed by the patient and the responsible physician. Patients should be informed that they have the right to stop the treatment any time they wish {Younger MEM, 2012}{37}.

González-Enríquez J et al. Result Card TEC14 In: González-Enríquez J et al. Description and technical characteristics of technology In: Jefferson T, Cerbo M, Vicari N [eds.]. Use of Intravenous immunoglobulins for Alzeheimer’s disease including Mild Cognitive Impairment [Core HTA], Agenas - Agenzia nazionale per i servizi sanitari regionali ; 2015. [cited 30 June 2022]. Available from: