title: Patient engagement and patient support programs in allergy immunotherapy: a call to action for improving long-term adherence.
abstract: Allergy immunotherapy (AIT) is acknowledged to produce beneficial mid- and long-term clinical and immunologic effects and increased quality of life in patients with allergic respiratory diseases (such as allergic rhinoconjunctivitis and allergic asthma). However, poor adherence to AIT (due to intentional and/or non-intentional factors) is still a barrier to achieving these benefits. There is an urgent need for patient support programs (PSPs) that encompass communication, educational and motivational components. In the field of AIT, a PSP should be capable of (1) improving adherence, (2) boosting patient engagement, (3) explaining how AIT differs from pharmacological allergy treatments; (4) increasing health literacy about chronic, progressive, immunoglobulin-E-mediated immune diseases, (5) helping the patient to understand and manage local or systemic adverse events, and (6) providing and/or predicting local data on aeroallergen levels. We reviewed the literature in this field and have identified a number of practical issues to be addressed when implementing a PSP for AIT: the measurement of adherence, the choice of technologies, reminders, communication channels and content, the use of "push" messaging and social networks, interactivity, and the involvement of caregivers and patient leaders. A key issue is "hi-tech" (i.e. approaches based mainly on information technology) vs. "hi-touch" (based mainly on interaction with humans, i.e. family members, patient mentors and healthcare professionals). We conclude that multistakeholder PSPs (combining patient-, provider and society-based actions) must now be developed and tested with a view to increasing adherence, efficacy and safety in the field of AIT.
authors.affiliation: Department of Pulmonology, Division of Allergy, Hôpital Arnaud de Villeneuve, University Hospital of Montpellier, Montpellier, France ; Sorbonne Universités, UPMC Paris 06, UMR-S 1136, IPLESP, Equipe EPAR, Paris, France.
authors.forename: Pascal
authors.initials: P
authors.lastname: Demoly
authors.affiliation: Allergy and Respiratory Diseases, IRCCS San Martino-IST, University of Genoa, Genoa, Italy.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Passalacqua
authors.affiliation: Center for Rhinology and Allergology, Wiesbaden, Germany ; Department of Otorhinolaryngology, Head and Neck Surgery, Universitätsmedizin Mannheim, Medical Faculty Mannheim, Heidelberg University, Mannheim, Germany.
authors.forename: Oliver
authors.initials: O
authors.lastname: Pfaar
authors.affiliation: Allergy Department, Fundación Jimenez Díaz, Madrid, Spain ; CIBERES, Instituto de Salud Carlos III, Universidad Autonoma de Madrid, Madrid, Spain.
authors.forename: Joaquin
authors.initials: J
authors.lastname: Sastre
authors.affiliation: Department of Pediatric Pulmonology and Immunology, Charité Virchow-Klinikum, Humboldt University, Berlin, Germany.
authors.forename: Ulrich
authors.initials: U
authors.lastname: Wahn
keywords: Adherence; Allergy immunotherapy; Patient engagement; Patient support program