DEVELOPMENT OF A SPECIFIC QUESTIONNAIRE ASSESSING THE IMPACT ON PARENTS OF AN INFANT'S BRONCHIOLITIS HOSPITALIZATION

Author(s)

Benoit Arnould, PhD, Director1, Alexandre Lapillonne, MD, PhD, Pediatrician2, Véronique Gournay, MD, Pediatrician3, Jean-Bernard Gouyon, MD, PhD, Pediatrician4, Guy Moriette, MD, PhD, Pediatrician5, Khadra Benmedjahed, BA, Senior Project Manager6, Aude Roborel de Climens, PhD, Senior Research Associate1, Hakim Bendjenana, MD, Medical unit Manager71Mapi Values, Lyon, France; 2 Saint Vincent de Paul Hospital, Paris, France; 3 University Hospital (CHU) of Nantes, Nantes Cedex, France; 4 University Hospital (CHU) of Dijon, Dijon, France; 5 Port-Royal Hospital, Paris, France; 6 Mapi Values France, Lyon, France; 7 Abbott Laboratories, Rungis Cedex, France

OBJECTIVES: To develop a questionnaire assessing the impact on parents of an infant's hospitalization for bronchiolitis. Bronchiolitis is a viral respiratory infection of the bronchioles most commonly caused by the respiratory syncytial virus. It usually affects infants of less than 2 years, particularly following premature delivery, bronchopulmonary dysplasia or congenital heart disease. Although generic questionnaires about the impact of a child's disease on family are available, no specific questionnaire linked to bronchiolitis hospitalization exists. METHODS: A multidisciplinary scientific committee was set up and included in the whole process of questionnaire development. A literature review, 3 clinician interviews and 18 exploratory interviews with parents of children hospitalized for bronchiolitis were conducted in parallel. The concepts identified were organised into a model. Items were generated for each concept using parents' words. The Impact of Bronchiolitis Hospitalization Questionnaire (IBHQ©) was developed in French to be completed by the parent who was the most often present at the hospital, within the seven days after bronchiolitis hospitalization, and again three months after hospitalization. The IBHQ© was tested for relevance and comprehension with nine new parents, and revised accordingly. RESULTS: Items generated for each concept identified were organised into eight sections: parents' emotional impact, infant's reactions, parents' physical impact, impact on daily organization, siblings' reactions, parents' behaviour with infant and siblings, impact on couple, and financial consequences. Except a few items that were modified or deleted following parents' suggestions, most of the items were well understood, and considered relevant and adequate by parents during comprehension tests. The revised IBHQ© contains 65 items. CONCLUSIONS: The IBHQ© is a unique and promising tool that provides a comprehensive evaluation of the impact of a child's bronchiolitis hospitalization on parents. An observational study is currently under way to validate psychometric properties and scoring of the questionnaire.

Conference/Value in Health Info

2009-05, ISPOR 2009, Orlando, FL, USA

Value in Health, Vol. 12, No. 3 (May 2009)

Code

PIH36

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Pediatrics, Respiratory-Related Disorders

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