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Management
Section 14. Quality of Life in Inborn Errors of Immunity
Recommendation 14.1
➤ We recommend performing QoL measurements in patients with IEI,
inclusive of patient-reported outcome (PRO) measurements conducted
with a validated tool. (S-M)
Recommendation 14.2
➤ We suggest that PROs should be measured using a disease-specific
QoL instrument and at important management changes in the patient's
clinical journey. (C-L)
Recommendation 14.3
➤ We suggest that patients with IEI have perceived health assessed at
each clinical encounter. (C-L)
Recommendation 14.4
➤ We suggest that patients with IEI be assessed for fatigue at each
clinical encounter. (C-L)
Recommendation 14.5
➤ We suggest implementing shared decision making between the
provider and the patient as part of clinical care to improve QoL and
patient satisfaction. (C-L)
