Patient Centered Outcomes of Orthopaedic Surgeries in Children with Cerebral Palsy

2.50
Hdl Handle:
http://hdl.handle.net/10755/308259
Category:
Abstract
Type:
Presentation
Title:
Patient Centered Outcomes of Orthopaedic Surgeries in Children with Cerebral Palsy
Author(s):
DiFazio, Rachel
Lead Author STTI Affiliation:
epilson beta
Author Details:
Rachel DiFazio, MS, RN, FAAN, rachel.difazio@childrens.harvard.edu
Abstract:

Poster presented on: Sunday, November 17, 2013, Saturday, November 16, 2013

Purpose: The purpose of this study is to elucidate changes in parents’ perceptions of health related quality of life (HRQOL) and caregiver burden in children with severe cerebral palsy (CP) following extensive orthopedic surgery and to determine the amount of nonmedical out-of-pocket expenses (NOOPEs) incurred during hospitalization. 

Background: CP is the most common cause of childhood physical disability. Children with severe non-ambulatory CP have multiple complex medical problems and frequently develop hip dislocations and neuromuscular scoliosis; these require extensive orthopaedic surgical interventions to prevent progression. The surgical trajectory is costly, resource intensive, and complications are common. Decision-making needs to extend beyond anticipated physical and radiographic improvements to include patient-centered outcomes including HRQOL, caregiver impact, and financial burden.

Methods: A single group prospective cohort study (N=48) design was used to measure changes pre- and post- surgery. NOOPEs were collected on a daily basis from parents during their child’s hospitalization.  A linear mixed-model regression analysis for longitudinal data, incorporating serial patient measurements over one year, was used to assess changes in HRQOL and caregiver impact using measures normed for this population (CPCHILD, ASCEND).  NOOPEs were calculated using descriptive statistics.

Results: Significant declines in HRQOL were noted at six weeks post-operative with return to baseline at three months. Long-term significant (p = .005) improvements, however, were noted beginning at six months. Caregiver impact did not change significantly over time.  The total NOOPEs for the inpatient ranged from $59.00 - $6977.50 (M = $1,046.64) with 1971.5 missed hours from work.

Conclusion:  Children with severe CP who undergo extensive orthopaedic surgery and their families experience improvements across a variety of patient-centered outcomes in the long-term following surgery. Nursing has a critical role in assisting families in decision-making around surgery and providing anticipatory guidance and support.

Keywords:
Children; Patient Centered Outcomes; Cerebral Palsy
Repository Posting Date:
19-Dec-2013
Date of Publication:
19-Dec-2013
Conference Date:
2013
Conference Name:
42nd Biennial Convention
Conference Host:
Sigma Theta Tau International, the Honor Society of Nursing
Conference Location:
Indianapolis, Indiana, USA
Description:
42nd Biennial Convention 2013 Theme: Give Back to Move Forward. Held at the JW Marriott
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission.

Full metadata record

DC FieldValue Language
dc.language.isoen_USen_GB
dc.type.categoryAbstracten_GB
dc.typePresentationen_GB
dc.titlePatient Centered Outcomes of Orthopaedic Surgeries in Children with Cerebral Palsyen_GB
dc.contributor.authorDiFazio, Rachelen_GB
dc.contributor.departmentepilson betaen_GB
dc.author.detailsRachel DiFazio, MS, RN, FAAN, rachel.difazio@childrens.harvard.eduen_GB
dc.identifier.urihttp://hdl.handle.net/10755/308259-
dc.description.abstract<p>Poster presented on: Sunday, November 17, 2013, Saturday, November 16, 2013</p>Purpose: The purpose of this study is to elucidate changes in parents’ perceptions of health related quality of life (HRQOL) and caregiver burden in children with severe cerebral palsy (CP) following extensive orthopedic surgery and to determine the amount of nonmedical out-of-pocket expenses (NOOPEs) incurred during hospitalization.  <p>Background: CP is the most common cause of childhood physical disability. Children with severe non-ambulatory CP have multiple complex medical problems and frequently develop hip dislocations and neuromuscular scoliosis; these require extensive orthopaedic surgical interventions to prevent progression. The surgical trajectory is costly, resource intensive, and complications are common. Decision-making needs to extend beyond anticipated physical and radiographic improvements to include patient-centered outcomes including HRQOL, caregiver impact, and financial burden. <p>Methods: A single group prospective cohort study (N=48) design was used to measure changes pre- and post- surgery. NOOPEs were collected on a daily basis from parents during their child’s hospitalization.  A linear mixed-model regression analysis for longitudinal data, incorporating serial patient measurements over one year, was used to assess changes in HRQOL and caregiver impact using measures normed for this population (CPCHILD, ASCEND).  NOOPEs were calculated using descriptive statistics. <p>Results: Significant declines in HRQOL were noted at six weeks post-operative with return to baseline at three months. Long-term significant (<i>p </i>= .005) improvements, however, were noted beginning at six months. Caregiver impact did not change significantly over time.  The total NOOPEs for the inpatient ranged from $59.00 - $6977.50 (M = $1,046.64) with 1971.5 missed hours from work. <p>Conclusion:  Children with severe CP who undergo extensive orthopaedic surgery and their families experience improvements across a variety of patient-centered outcomes in the long-term following surgery. Nursing has a critical role in assisting families in decision-making around surgery and providing anticipatory guidance and support.en_GB
dc.subjectChildrenen_GB
dc.subjectPatient Centered Outcomesen_GB
dc.subjectCerebral Palsyen_GB
dc.date.available2013-12-19T17:28:57Z-
dc.date.issued2013-12-19-
dc.date.accessioned2013-12-19T17:28:57Z-
dc.conference.date2013en_GB
dc.conference.name42nd Biennial Conventionen_GB
dc.conference.hostSigma Theta Tau International, the Honor Society of Nursingen_GB
dc.conference.locationIndianapolis, Indiana, USAen_GB
dc.description42nd Biennial Convention 2013 Theme: Give Back to Move Forward. Held at the JW Marriotten_GB
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission.en_GB
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