Health-related quality of life, treatment satisfaction and clinical aspects of patients with primary antibody deficiency receiving subcutaneous IgG self-infusions at home
Notice bibliographique
Résumé
Patients with primary antibody deficiencies (PAD) are unable to produce sufficient amounts of antibodies and are therefore susceptible to severe bacterial infections. The standard therapy has been intravenous infusions of immunoglobulin G (IVIG) every 2-4 weeks. While this treatment has proved to be effective and safe, it is cumbersome for patients: it may be difficult to find venous access, and they have to visit the hospital regularly to deal with repeated IVIG infusions. IgG serum levels are not stable between infusions. \n \n \n \nRapid subcutaneous immunoglobulin G (SCIG) self-infusions provide a suitable alternative that has an excellent safety and efficacy profile, is easy, and can be performed at home. As IVIG and SCIG replacement therapies are both equally effective, patient-reported outcomes (PRO) such as health-related quality of life (HRQL), and treatment satisfaction (TS) may be used as criteria for an evidence-based choice of treatment alternatives. \n \n \n \nStudies investigating the infection experience of paediatric and adult PAD patients, as well as data addressing the HRQL and TS of PAD patients, have been rare or even non-existent. Some questionnaires used to capture PRO data have never been used or validated in PAD patients. \n \n \n \nFor the present project two prospective multinational studies were conducted in PAD patients, one in Europe and Brazil, and another one in the USA and Canada, with the following objectives: to study the safety and efficacy of rapid SCIG self-infusions at home (adults, children); to compare IVIG replacement therapy in the hospital or at home and SCIG self-infusions at home with regard to PRO measures (HRQL: SF-36 for adults, CHQPF50 for children; TS: LQI for adults and children); and to examine validation aspects of the instruments used to assess HRQL and TS. Once they had switched from IVIG to SCIG therapy, IgG levels increased in children and remained constant in adults. Only one serious infection (pneumonia) occurred, and the rate of systemic adverse reactions, mainly mild, amounted to 1% of the infusions. \n \n \n \nTwenty-eight percent of the infusions were followed by mostly mild, local, transient tissue reactions which required no treatment and declined over time. Parents reported significant improvements related to their children's social functioning and health, the parents' own life situation and the way the family functioned. There was significant improvement on the SF-36 Mental Health and Social Functioning scales in the European study, and on the Role Physical, General Health and Health Transition scales in the North American study. The Vitality scale improved significantly in both studies. \n \n \n \nFor patients on IVIG at hospital at enrolment, SCIG home therapy resulted in greater independence, with less disruption of daily activities, less impact on school, work and social activities, freedom to travel, better therapy convenience, comfort, treatment flexibility and pleasantness of treatment atmosphere. Patients who had received IVIG at home at study enrolment reported improved health status. Almost all adult and paediatric patients/caregivers preferred home treatment, and a great majority, even those who had been satisfied with IVIG at home, preferred subcutaneous self-infusions. The LQI could be broken down into four factors, relating to treatment interference with daily life activities, therapy-related problems, therapy setting and costs. \n \n \n \nTo conclude, the studies have shown that SCIG self-infusions at home are not only effective and safe, but adults, children and their caregivers appreciate this method. HRQL is significantly improved and a marked improvement in TS gives the patients and their families greater independence and flexibility.
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Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,000 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,001 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,004 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.
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