Development of an Outcome Measure of Observable Signs of Health and Well-Being in Infants With Orofacial Clefts.
Cleft Palate Craniofac J
; 57(11): 1266-1279, 2020 11.
Article
em En
| MEDLINE
| ID: mdl-32468839
ABSTRACT
OBJECTIVE:
To develop an outcomes instrument that assesses observations that can be reliably reported by caregivers and can be used to assess health of infants with a cleft lip or cleft lip and cleft palate (CL±P) and impacts of treatments.DESIGN:
Cross-sectional, mixed methods study.SETTING:
Caregivers and health-care providers were recruited from 3 academic craniofacial centers and national advertisements. Most interviews were conducted by telephone, and surveys were completed online.PARTICIPANTS:
Caregivers had a child less than 3 years of age with CL±P and spoke either English or Spanish. Health-care providers were members of a cleft team. Caregivers (n = 492) and health-care professionals (n = 75) participated in at least one component of this study. MAIN OUTCOME MEASURE(S) Caregivers and health-care providers participated in tasks related to instrument development concept elicitation for items within relevant health domains, prioritization of items, and item review.RESULTS:
We identified 295 observations of infant well-being across 9 health areas. Research staff and specialists evaluated items for clarity, specificity to CL±P, and responsiveness to treatment. Caregivers and health-care providers rated the resulting list of 104 observations and developed the final instrument of 65 items.CONCLUSIONS:
In this phase of development of the Infant with Clefts Observation Outcomes (iCOO) instrument, items were developed to collect caregiver observations about indicators of children's health and well-being across multiple domains allowing for psychometric testing, sensitivity to changes associated with treatment, and documentation of the effects of treatment.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Fenda Labial
/
Fissura Palatina
Tipo de estudo:
Diagnostic_studies
/
Observational_studies
/
Prevalence_studies
/
Risk_factors_studies
Limite:
Child
/
Humans
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Infant
Idioma:
En
Revista:
Cleft Palate Craniofac J
Assunto da revista:
ODONTOLOGIA
Ano de publicação:
2020
Tipo de documento:
Article
País de afiliação:
Estados Unidos