Profiling families enrolled in food allergy immunotherapy studies.

Hdl Handle:
http://hdl.handle.net/10147/200960
Title:
Profiling families enrolled in food allergy immunotherapy studies.
Authors:
DunnGalvin, Audrey; Chang, Wen Chin; Laubach, Susan; Steele, Pamela H; Dubois, Anthony E J; Burks, A Wesley; Hourihane, Jonathan O'B
Affiliation:
Department of Pediatrics and Child Health, University College, Cork, Ireland. a.dunngalvin@ucc.ie
Citation:
Profiling families enrolled in food allergy immunotherapy studies. 2009, 124 (3):e503-9 Pediatrics
Journal:
Pediatrics
Issue Date:
Sep-2009
URI:
http://hdl.handle.net/10147/200960
DOI:
10.1542/peds.2008-3642
PubMed ID:
19706573
Additional Links:
http://pediatrics.aappublications.org/content/124/3/e503.full.pdf+html
Abstract:
Little is known about specific psychological factors that affect parents' decisions to take part in clinical studies. We examined factors, related to health-related quality of life (HRQoL), that may influence parents' decision to allow their children to participate in research on clinical food allergy.; Parents of children with food allergies were offered investigational oral immunotherapy (OIT) in a regular outpatient clinic. Forty parents (group A) declined, and 25 parents (group B) agreed to take part. Both groups agreed to complete the Food Allergy Quality of Life-Parent Form and the Food Allergy Independent Measure.; Children were aged between 1 and 12 years (mean: 6.5 years). Groups A and B displayed a similar and typical distribution for gender, age, number of foods, severity and number of symptoms, and socioeconomic variables. Parents who chose to enroll their children in the OIT trial reported a similar impact of food allergy on the HRQoL of their children as parents of children who did not volunteer for the study. Participating parents perceived a significantly higher likelihood (odds ratio: 6.753) of their child having a severe reaction and dying if food is ingested. By using this model, the likelihood of taking part in immunotherapy could be predicted accurately in 90% of cases.; Parents who had higher anxiety about negative outcomes from accidental ingestion were more likely to consent to experimental therapy for their child. This finding has ethical implications for investigators and supports the need to create mechanisms to avoid unintended coercion in vulnerable groups.
Item Type:
Article
Language:
en
Description:
BACKGROUND: Little is known about specific psychological factors that affect parents' decisions to take part in clinical studies. We examined factors, related to health-related quality of life (HRQoL), that may influence parents' decision to allow their children to participate in research on clinical food allergy. METHODS: Parents of children with food allergies were offered investigational oral immunotherapy (OIT) in a regular outpatient clinic. Forty parents (group A) declined, and 25 parents (group B) agreed to take part. Both groups agreed to complete the Food Allergy Quality of Life-Parent Form and the Food Allergy Independent Measure. RESULTS: Children were aged between 1 and 12 years (mean: 6.5 years). Groups A and B displayed a similar and typical distribution for gender, age, number of foods, severity and number of symptoms, and socioeconomic variables. Parents who chose to enroll their children in the OIT trial reported a similar impact of food allergy on the HRQoL of their children as parents of children who did not volunteer for the study. Participating parents perceived a significantly higher likelihood (odds ratio: 6.753) of their child having a severe reaction and dying if food is ingested. By using this model, the likelihood of taking part in immunotherapy could be predicted accurately in 90% of cases. CONCLUSIONS: Parents who had higher anxiety about negative outcomes from accidental ingestion were more likely to consent to experimental therapy for their child. This finding has ethical implications for investigators and supports the need to create mechanisms to avoid unintended coercion in vulnerable groups.
MeSH:
Child; Child, Preschool; Clinical Trials as Topic; Family; Female; Food Hypersensitivity; Humans; Immunotherapy; Infant; Male; Questionnaires
ISSN:
1098-4275

Full metadata record

DC FieldValue Language
dc.contributor.authorDunnGalvin, Audreyen
dc.contributor.authorChang, Wen Chinen
dc.contributor.authorLaubach, Susanen
dc.contributor.authorSteele, Pamela Hen
dc.contributor.authorDubois, Anthony E Jen
dc.contributor.authorBurks, A Wesleyen
dc.contributor.authorHourihane, Jonathan O'Ben
dc.date.accessioned2012-01-09T16:08:41Z-
dc.date.available2012-01-09T16:08:41Z-
dc.date.issued2009-09-
dc.identifier.citationProfiling families enrolled in food allergy immunotherapy studies. 2009, 124 (3):e503-9 Pediatricsen
dc.identifier.issn1098-4275-
dc.identifier.pmid19706573-
dc.identifier.doi10.1542/peds.2008-3642-
dc.identifier.urihttp://hdl.handle.net/10147/200960-
dc.descriptionBACKGROUND: Little is known about specific psychological factors that affect parents' decisions to take part in clinical studies. We examined factors, related to health-related quality of life (HRQoL), that may influence parents' decision to allow their children to participate in research on clinical food allergy. METHODS: Parents of children with food allergies were offered investigational oral immunotherapy (OIT) in a regular outpatient clinic. Forty parents (group A) declined, and 25 parents (group B) agreed to take part. Both groups agreed to complete the Food Allergy Quality of Life-Parent Form and the Food Allergy Independent Measure. RESULTS: Children were aged between 1 and 12 years (mean: 6.5 years). Groups A and B displayed a similar and typical distribution for gender, age, number of foods, severity and number of symptoms, and socioeconomic variables. Parents who chose to enroll their children in the OIT trial reported a similar impact of food allergy on the HRQoL of their children as parents of children who did not volunteer for the study. Participating parents perceived a significantly higher likelihood (odds ratio: 6.753) of their child having a severe reaction and dying if food is ingested. By using this model, the likelihood of taking part in immunotherapy could be predicted accurately in 90% of cases. CONCLUSIONS: Parents who had higher anxiety about negative outcomes from accidental ingestion were more likely to consent to experimental therapy for their child. This finding has ethical implications for investigators and supports the need to create mechanisms to avoid unintended coercion in vulnerable groups.en
dc.description.abstractLittle is known about specific psychological factors that affect parents' decisions to take part in clinical studies. We examined factors, related to health-related quality of life (HRQoL), that may influence parents' decision to allow their children to participate in research on clinical food allergy.-
dc.description.abstractParents of children with food allergies were offered investigational oral immunotherapy (OIT) in a regular outpatient clinic. Forty parents (group A) declined, and 25 parents (group B) agreed to take part. Both groups agreed to complete the Food Allergy Quality of Life-Parent Form and the Food Allergy Independent Measure.-
dc.description.abstractChildren were aged between 1 and 12 years (mean: 6.5 years). Groups A and B displayed a similar and typical distribution for gender, age, number of foods, severity and number of symptoms, and socioeconomic variables. Parents who chose to enroll their children in the OIT trial reported a similar impact of food allergy on the HRQoL of their children as parents of children who did not volunteer for the study. Participating parents perceived a significantly higher likelihood (odds ratio: 6.753) of their child having a severe reaction and dying if food is ingested. By using this model, the likelihood of taking part in immunotherapy could be predicted accurately in 90% of cases.-
dc.description.abstractParents who had higher anxiety about negative outcomes from accidental ingestion were more likely to consent to experimental therapy for their child. This finding has ethical implications for investigators and supports the need to create mechanisms to avoid unintended coercion in vulnerable groups.-
dc.language.isoenen
dc.relation.urlhttp://pediatrics.aappublications.org/content/124/3/e503.full.pdf+htmlen
dc.subject.meshChild-
dc.subject.meshChild, Preschool-
dc.subject.meshClinical Trials as Topic-
dc.subject.meshFamily-
dc.subject.meshFemale-
dc.subject.meshFood Hypersensitivity-
dc.subject.meshHumans-
dc.subject.meshImmunotherapy-
dc.subject.meshInfant-
dc.subject.meshMale-
dc.subject.meshQuestionnaires-
dc.titleProfiling families enrolled in food allergy immunotherapy studies.en
dc.typeArticleen
dc.contributor.departmentDepartment of Pediatrics and Child Health, University College, Cork, Ireland. a.dunngalvin@ucc.ieen
dc.identifier.journalPediatricsen
dc.description.provinceMunster-

Related articles on PubMed

All Items in Lenus, The Irish Health Repository are protected by copyright, with all rights reserved, unless otherwise indicated.