Caregiver-reported outcomes and barriers to care among patients with cleft lip and palate

Katelyn G. Bennett, Kavitha Ranganathan, Anne K. Patterson, Michaella K. Baker, Christian J. Vercler, Steven J. Kasten, Steven R. Buchman, Jennifer F. Waljee

Research output: Contribution to journalArticle

Abstract

Background: For children with cleft lip and/or palate, access to care is vital for optimizing speech, appearance, and psychosocial outcomes. The authors posited that inadequate access to care negatively impacts outcomes in this population. Methods: Sixty caregivers of children with cleft lip and palate were surveyed to assess perceived barriers using the validated Barriers to Care questionnaire. The questionnaire includes 39 items divided into five subscales, with higher scores indicating fewer barriers. Caregiver-reported outcomes were assessed using the Cleft Evaluation Profile, which captures cleft-specific appearanceand speech-related outcomes. Higher scores correspond to less satisfactory outcomes. Desire for revision surgery was assessed as a binary outcome among caregivers. Multivariable regression was used to evaluate the relationship of barriers to care, caregiver-reported outcomes, and desire for revision, adjusting for clinical and demographic covariates. Results: Sixty percent of caregivers perceived barriers to care, and caregivers who reported poorer access to care described poorer cleft-related outcomes (r2 = 0.19, p = 0.024). Caregivers with poorer skills (r2 = 0.17, p = 0.037), expectations (r2 = 0.17, p = 0.045), and pragmatics (r2 = 0.18, p = 0.026) subscale scores were associated with worse Cleft Evaluation Profile scores. Barriers were also negatively associated with aesthetic item scores (r2 = 0.11, p = 0.025). Finally, caregivers reporting fewer barriers were 21.2 percent less likely to express interest in revision surgery. Conclusions: Barriers to care were associated with poorer appearance-related outcomes and increased interest in revision among caregivers of cleft patients. Enhancing access to care is critical in order to effectively meet goals of care for these families.

Original languageEnglish (US)
Pages (from-to)884E-891E
JournalPlastic and reconstructive surgery
Volume142
Issue number6
DOIs
StatePublished - Jan 1 2018
Externally publishedYes

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Cleft Lip
Cleft Palate
Caregivers
Patient Care
Reoperation
Patient Care Planning
Critical Care
Esthetics
Demography

ASJC Scopus subject areas

  • Surgery

Cite this

Bennett, K. G., Ranganathan, K., Patterson, A. K., Baker, M. K., Vercler, C. J., Kasten, S. J., ... Waljee, J. F. (2018). Caregiver-reported outcomes and barriers to care among patients with cleft lip and palate. Plastic and reconstructive surgery, 142(6), 884E-891E. https://doi.org/10.1097/PRS.0000000000004987

Caregiver-reported outcomes and barriers to care among patients with cleft lip and palate. / Bennett, Katelyn G.; Ranganathan, Kavitha; Patterson, Anne K.; Baker, Michaella K.; Vercler, Christian J.; Kasten, Steven J.; Buchman, Steven R.; Waljee, Jennifer F.

In: Plastic and reconstructive surgery, Vol. 142, No. 6, 01.01.2018, p. 884E-891E.

Research output: Contribution to journalArticle

Bennett, KG, Ranganathan, K, Patterson, AK, Baker, MK, Vercler, CJ, Kasten, SJ, Buchman, SR & Waljee, JF 2018, 'Caregiver-reported outcomes and barriers to care among patients with cleft lip and palate', Plastic and reconstructive surgery, vol. 142, no. 6, pp. 884E-891E. https://doi.org/10.1097/PRS.0000000000004987
Bennett, Katelyn G. ; Ranganathan, Kavitha ; Patterson, Anne K. ; Baker, Michaella K. ; Vercler, Christian J. ; Kasten, Steven J. ; Buchman, Steven R. ; Waljee, Jennifer F. / Caregiver-reported outcomes and barriers to care among patients with cleft lip and palate. In: Plastic and reconstructive surgery. 2018 ; Vol. 142, No. 6. pp. 884E-891E.
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AU - Vercler, Christian J.

AU - Kasten, Steven J.

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AU - Waljee, Jennifer F.

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