Quality-of-Life in Children with Orofacial Clefts and Caregiver Well-being

L. Sischo, M. Wilson-Genderson, Hillary Broder

Research output: Contribution to journalArticle

Abstract

Quality of life is a valid patient-reported parameter that provides an assessment of treatment need or outcomes complementary to standard clinical measures. Such patient-reported assessments are particularly salient when examining chronic conditions with prolonged treatment trajectories, such as cleft lip and palate. This critical review identifies key questions related to ongoing research on the oral health–related quality of life (OHRQoL) in children with cleft and caregiver well-being. Details of the design and results from 2 longitudinal multicenter studies are presented. This article also provides an update on recent published reports regarding OHRQoL in individuals with cleft. Methodological issues in OHRQoL research are discussed, including condition-specific versus generic instruments, incorporating positive items in OHRQoL instruments, calculating minimally important differences in OHRQoL, implementing mixed methods design, and utilizing validated short assessment forms in OHRQoL research. Finally, new directions for research in cleft as a chronic condition are identified and discussed.

Original languageEnglish (US)
Pages (from-to)1474-1481
Number of pages8
JournalJournal of Dental Research
Volume96
Issue number13
DOIs
StatePublished - Dec 1 2017

Fingerprint

Caregivers
Quality of Life
Research
Needs Assessment
Cleft Lip
Cleft Palate
Multicenter Studies
Longitudinal Studies
Outcome Assessment (Health Care)
Therapeutics

Keywords

  • cleft lip
  • cleft palate
  • family relations
  • longitudinal studies
  • patient-reported outcomes
  • resilience

ASJC Scopus subject areas

  • Dentistry(all)

Cite this

Quality-of-Life in Children with Orofacial Clefts and Caregiver Well-being. / Sischo, L.; Wilson-Genderson, M.; Broder, Hillary.

In: Journal of Dental Research, Vol. 96, No. 13, 01.12.2017, p. 1474-1481.

Research output: Contribution to journalArticle

Sischo, L. ; Wilson-Genderson, M. ; Broder, Hillary. / Quality-of-Life in Children with Orofacial Clefts and Caregiver Well-being. In: Journal of Dental Research. 2017 ; Vol. 96, No. 13. pp. 1474-1481.
@article{0615d2041d474c72b8a7be3bfc166e61,
title = "Quality-of-Life in Children with Orofacial Clefts and Caregiver Well-being",
abstract = "Quality of life is a valid patient-reported parameter that provides an assessment of treatment need or outcomes complementary to standard clinical measures. Such patient-reported assessments are particularly salient when examining chronic conditions with prolonged treatment trajectories, such as cleft lip and palate. This critical review identifies key questions related to ongoing research on the oral health–related quality of life (OHRQoL) in children with cleft and caregiver well-being. Details of the design and results from 2 longitudinal multicenter studies are presented. This article also provides an update on recent published reports regarding OHRQoL in individuals with cleft. Methodological issues in OHRQoL research are discussed, including condition-specific versus generic instruments, incorporating positive items in OHRQoL instruments, calculating minimally important differences in OHRQoL, implementing mixed methods design, and utilizing validated short assessment forms in OHRQoL research. Finally, new directions for research in cleft as a chronic condition are identified and discussed.",
keywords = "cleft lip, cleft palate, family relations, longitudinal studies, patient-reported outcomes, resilience",
author = "L. Sischo and M. Wilson-Genderson and Hillary Broder",
year = "2017",
month = "12",
day = "1",
doi = "10.1177/0022034517725707",
language = "English (US)",
volume = "96",
pages = "1474--1481",
journal = "Journal of Dental Research",
issn = "0022-0345",
publisher = "SAGE Publications Inc.",
number = "13",

}

TY - JOUR

T1 - Quality-of-Life in Children with Orofacial Clefts and Caregiver Well-being

AU - Sischo, L.

AU - Wilson-Genderson, M.

AU - Broder, Hillary

PY - 2017/12/1

Y1 - 2017/12/1

N2 - Quality of life is a valid patient-reported parameter that provides an assessment of treatment need or outcomes complementary to standard clinical measures. Such patient-reported assessments are particularly salient when examining chronic conditions with prolonged treatment trajectories, such as cleft lip and palate. This critical review identifies key questions related to ongoing research on the oral health–related quality of life (OHRQoL) in children with cleft and caregiver well-being. Details of the design and results from 2 longitudinal multicenter studies are presented. This article also provides an update on recent published reports regarding OHRQoL in individuals with cleft. Methodological issues in OHRQoL research are discussed, including condition-specific versus generic instruments, incorporating positive items in OHRQoL instruments, calculating minimally important differences in OHRQoL, implementing mixed methods design, and utilizing validated short assessment forms in OHRQoL research. Finally, new directions for research in cleft as a chronic condition are identified and discussed.

AB - Quality of life is a valid patient-reported parameter that provides an assessment of treatment need or outcomes complementary to standard clinical measures. Such patient-reported assessments are particularly salient when examining chronic conditions with prolonged treatment trajectories, such as cleft lip and palate. This critical review identifies key questions related to ongoing research on the oral health–related quality of life (OHRQoL) in children with cleft and caregiver well-being. Details of the design and results from 2 longitudinal multicenter studies are presented. This article also provides an update on recent published reports regarding OHRQoL in individuals with cleft. Methodological issues in OHRQoL research are discussed, including condition-specific versus generic instruments, incorporating positive items in OHRQoL instruments, calculating minimally important differences in OHRQoL, implementing mixed methods design, and utilizing validated short assessment forms in OHRQoL research. Finally, new directions for research in cleft as a chronic condition are identified and discussed.

KW - cleft lip

KW - cleft palate

KW - family relations

KW - longitudinal studies

KW - patient-reported outcomes

KW - resilience

UR - http://www.scopus.com/inward/record.url?scp=85034783077&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85034783077&partnerID=8YFLogxK

U2 - 10.1177/0022034517725707

DO - 10.1177/0022034517725707

M3 - Article

C2 - 28813183

AN - SCOPUS:85034783077

VL - 96

SP - 1474

EP - 1481

JO - Journal of Dental Research

JF - Journal of Dental Research

SN - 0022-0345

IS - 13

ER -