Studio longitudinale sulla valutazione della Qualità Di Vita Relata alla Salute (Health Related Quality of Life) nei pazienti con Immuno Deficienze Primitive Anticorpali in trattamento con terapia sostitutiva con immunoglobuline umane polivalenti

Anno
2019
Proponente Cinzia Milito - Ricercatore
Sottosettore ERC del proponente del progetto
LS6_6
Componenti gruppo di ricerca
Componente Categoria
Isabella Quinti Componenti strutturati del gruppo di ricerca
Metello Iacobini Componenti strutturati del gruppo di ricerca
Componente Qualifica Struttura Categoria
Federica Pulvirenti Dirigente Medico I Livello Azienda Policlinico Umberto I Altro personale aggregato Sapienza o esterni, titolari di borse di studio di ricerca
Livia Bonanni Dirigente Medico I livello Azienda Policlinico Unmberto I Altro personale aggregato Sapienza o esterni, titolari di borse di studio di ricerca
Anna Maria Pesce Dirigente Medico I livello Azienda Policlinico Umberto I Altro personale aggregato Sapienza o esterni, titolari di borse di studio di ricerca
Abstract

Treatment of patients living with Primary Antibody Deficiencies (PAD) could impose demands on daily life to plan and self-care management, as a result of the need to comply with complex therapeutic schedules, while balancing family or job commitment. This can result in a ¿burden of treatment¿. Several studies indicated that PAD patients manifest poor health-related quality of life which worsen over the time, due to associated clinical conditions. PAD patients require replacement therapy for life: on this basis, the acceptability of the schedules and settings for immunoglobulins (Ig) administration is an important factor in improving quality of life. Recently, a study on 327 Italian CVID patients showed that Ig replacement therapy schedules did not impact the health-related quality of life (HRQoL) if the choice of treatment was individualized after a long educational period focused on verifying the Ig therapy schedule ongoing at enrolment time. Starting from this observation, in this proposal we aim to collect longitudinal data on HRQoL of patients affected by PAD on different schedule and route of Ig replacement therapy. We will measure the impact of the switch from intravenously immunoglobulin preparations (IVIG) and/or subcutaneous Ig (SCIG) to treatment with facilitated Ig by human recombinant hyaluronidase (fSCIG) on HRQoL in a population of PAD patients by a prospective, longitudinal, observational study. For the evaluation of HRQoL, a recently validated specific tool for Primary antibody Deficiencies ¿the CVID_QoL questionnaires¿ will be used. This instrument allowed to highlight the impact of the immunodeficiency as an overall problem on IgG replacement therapy recipients¿ well-being. Our study sought to generate information to help health care professionals to understand factors that may impact on patient¿s everyday life and contribute to maximizing patient empowerment, satisfaction with care, and burden of treatment while minimizing the impact of illness.

ERC
LS6_7, LS6_2, LS7_3
Keywords:
IMMUNOLOGIA CLINICA, IMMUNOLOGIA, IMMUNOFARMACOLOGIA, MALATTIE RARE, BENESSERE

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