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OCCUPATIONAL THERAPY PROGRAM, DEPARTMENT OF KINESIOLOGY, UNIVERSITY OF WISCONSIN-MADISON
Changes in Quality of Life for Caregivers of Children
with Cerebral Palsy Following ITB Treatment
Brenna Patterson, OTS and Ruth Benedict, DrPH, OTR/L
Acknowledgments
Results
Participants
• Caregivers of children or young adults with CP receiving ITB
treatment
• Recruited from the Spasticity and Movement Disorders Clinic
(SMDC) at the Waisman Center
• Hypothesis 1: N=15; Completed QOL questionnaire at baseline
and 6-months post-ITB implantation
• Hypothesis 2: N=11; Completed the QOL questionnaire at
baseline, 6-, 12-, and 24-months post-ITB implantation
Design & Intervention
• Longitudinal study with repeated measures design was used to
determine change in QOL levels from baseline to 6-months and
24-months following ITB treatment
Measures
• World Health Organization QOL-Bref (WHOQOL-Bref) is a self-
report questionnaire with Physical, Psychological, Social
Relationship, and Environmental QOL domains
Data Analysis
• Repeated Measures ANOVA
• Friedman nonparametric test
• Wilcoxon signed rank test as a post-hoc comparison
Research Design &
Methods
• Cerebral Palsy (CP) is characterized by motor impairment, often
driven by spasticity and dystonia1, 3
• An estimated 3.1 /1000 children are affected by CP and many
are dependent on caregivers3
• Intrathecal Baclofen (ITB), continuous infusion muscle relaxant,
is used to reduce spasticity for the child and may decrease
caregiver burden6
• Caregivers of children with CP are known to experience
symptoms of stress and decreased Quality of Life (QOL)1,2,4,5
• Effects of ITB treatment on caregiving, however, are not well
known
Purpose
• To determine the effects of ITB treatment among children with
cerebral palsy on their caregivers' quality of life.
Hypotheses
• #1: Caregiver physical, psychological, social relationship, and
environmental QOL will improve from baseline to 6 months
post-ITB intervention.
• #2: Increases in caregiver physical, psychological, social
relationship, and environmental QOL will be sustained or
further improved at 24-months post-ITB intervention.
Introduction
• ITB treatment did not significantly improve
caregiver physical, psychological, social
relationship, or environmental QOL over time
• In some cases, ITB appears to have made a
difference for individuals, but variability was too
great to find an effect for the group as a whole
• Caregiver quality of life is appears to be relatively
stable through the changes that occur in child
status following ITB treatment
• Global QOL measures may not be sensitive
enough to detect changes that occur in caregiving
for a child with CP
Conclusions
• When caregivers are considering ITB pump treatment,
understanding the effects on both their child and
themselves is an important consideration in order to
ensure continuity of care
• A caregiver of a child with GMFCS classification of III-V who
receives ITB may have stable, or similar, QOL levels as pre-
ITB implantation
• Therapists should inform families that outcomes of ITB for
caregiver QOL can be quite varied, and for most does not
change significantly.
Implications for Practice
No Mean Change Observed in Quality of Life
• Hypothesis 1 was not supported; no significant increase in physical, psychological,
social relationship, or environmental QOL observed from pre- to 6-months post-ITB
• The Friedman nonparametric test suggested a significant change in overall QOL from
baseline to 6-months ( χ2(7) = 15.729, p = 0.028), however, post-hoc comparison was
not significant
• Hypothesis 2 was not supported; there was no significant increase in mean QOL
observed from pre- to 24-months post-ITB treatment
References
0
20
40
60
80
100
Baseline 6 Months
Physical QOL
0
20
40
60
80
100
Baseline 6 Month
Psychological QOL
0
20
40
60
80
100
Baseline 6 Month
Social Relationship QOL
0
20
40
60
80
100
Baseline 6 Month
Environment QOL
We would like to thank the Cerebral Palsy International
Research Foundation, the Pedal-with-Pete Foundation, the
Virginia Horne Henry Fund, the Wisconsin Alumni Research
Foundation, and the Spasticity and Movement Disorders
Clinic at the Waisman Center at the University of Wisconsin-
Madison. Thank you to my research mentor, Dr. Ruth
Benedict, for the support and guidance. I’d also like to thank
Dr. Travers, my research team, classmates, and family and
friends for their support of this project.
1. Albright, A. L., & Ferson, S. S. (2006). Intrathecal baclofen therapy in children. Neurosurgical Focus,
21(2), 1-6. doi: 10.3171/foc.2006.21.2.4
2. Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S. D., Russell, D. J., Swinton, M., & Rosenbaum, P. (2004).
The health of primary caregivers of children with cerebral palsy: how does it compare with that of
other Canadian caregivers?. Pediatrics, 114(2), e182-e191.
3. Christensen, D., Van Naarden Braun, K., Doernberg, N. S., Maenner, M. J., Arneson, C. L., Durkin, M. S.,
Yeargin-Allsopp, M. (2014). Prevalence of cerebral palsy, co-occurring autism spectrum disorders,
and motor functioning – Autism and Developmental Disabilities Monitoring Network, USA, 2008.
Developmental Medicine & Child Neurology, 56(1), 59-65. doi: 10.1111/dmcn.12268
4. Dehghan, L., Dalvand, H., Feizi, A., Samadi, S. A., & Hosseini, S. A. (2014). Quality of life in mothers of
children with cerebral palsy: The role of children’s gross motor function. Journal of Child Health
Care.
5. Romeo, D. M., Cioni, M., DiStefano, A., Battaglia, L. R., Costanzo, L., Ricci, D., Mercuri, E. (2010). Quality
of Life in Parents of Children with Cerebral Palsy: Is it Influenced by the Child's Behaviour?
Neuropediatrics, 41(03), 121-126. doi: 10.1055/s-0030-1262841
6. Walter, M., Altermatt, S., Furrer, C., & Meyer-Heim, A. (2013). Intrathecal baclofen therapy in children
with severe spasticity: Outcome and complications. Developmental Neurorehabilitation, 1-7. doi:
10.3109/17518423.2013.827256
Baseline to 6 Months
Baseline to 24 Months
0
20
40
60
80
100
Baseline 24 Month
Physical QOL
0
20
40
60
80
100
Baseline 24 Months
Psychological QOL
0
20
40
60
80
100
Baseline 24 Months
Social Relationship QOL
0
20
40
60
80
100
Baseline 24 Month
Environmental QOL

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Patterson_Poster Draft_OT+s2014_RB3

  • 1. OCCUPATIONAL THERAPY PROGRAM, DEPARTMENT OF KINESIOLOGY, UNIVERSITY OF WISCONSIN-MADISON Changes in Quality of Life for Caregivers of Children with Cerebral Palsy Following ITB Treatment Brenna Patterson, OTS and Ruth Benedict, DrPH, OTR/L Acknowledgments Results Participants • Caregivers of children or young adults with CP receiving ITB treatment • Recruited from the Spasticity and Movement Disorders Clinic (SMDC) at the Waisman Center • Hypothesis 1: N=15; Completed QOL questionnaire at baseline and 6-months post-ITB implantation • Hypothesis 2: N=11; Completed the QOL questionnaire at baseline, 6-, 12-, and 24-months post-ITB implantation Design & Intervention • Longitudinal study with repeated measures design was used to determine change in QOL levels from baseline to 6-months and 24-months following ITB treatment Measures • World Health Organization QOL-Bref (WHOQOL-Bref) is a self- report questionnaire with Physical, Psychological, Social Relationship, and Environmental QOL domains Data Analysis • Repeated Measures ANOVA • Friedman nonparametric test • Wilcoxon signed rank test as a post-hoc comparison Research Design & Methods • Cerebral Palsy (CP) is characterized by motor impairment, often driven by spasticity and dystonia1, 3 • An estimated 3.1 /1000 children are affected by CP and many are dependent on caregivers3 • Intrathecal Baclofen (ITB), continuous infusion muscle relaxant, is used to reduce spasticity for the child and may decrease caregiver burden6 • Caregivers of children with CP are known to experience symptoms of stress and decreased Quality of Life (QOL)1,2,4,5 • Effects of ITB treatment on caregiving, however, are not well known Purpose • To determine the effects of ITB treatment among children with cerebral palsy on their caregivers' quality of life. Hypotheses • #1: Caregiver physical, psychological, social relationship, and environmental QOL will improve from baseline to 6 months post-ITB intervention. • #2: Increases in caregiver physical, psychological, social relationship, and environmental QOL will be sustained or further improved at 24-months post-ITB intervention. Introduction • ITB treatment did not significantly improve caregiver physical, psychological, social relationship, or environmental QOL over time • In some cases, ITB appears to have made a difference for individuals, but variability was too great to find an effect for the group as a whole • Caregiver quality of life is appears to be relatively stable through the changes that occur in child status following ITB treatment • Global QOL measures may not be sensitive enough to detect changes that occur in caregiving for a child with CP Conclusions • When caregivers are considering ITB pump treatment, understanding the effects on both their child and themselves is an important consideration in order to ensure continuity of care • A caregiver of a child with GMFCS classification of III-V who receives ITB may have stable, or similar, QOL levels as pre- ITB implantation • Therapists should inform families that outcomes of ITB for caregiver QOL can be quite varied, and for most does not change significantly. Implications for Practice No Mean Change Observed in Quality of Life • Hypothesis 1 was not supported; no significant increase in physical, psychological, social relationship, or environmental QOL observed from pre- to 6-months post-ITB • The Friedman nonparametric test suggested a significant change in overall QOL from baseline to 6-months ( χ2(7) = 15.729, p = 0.028), however, post-hoc comparison was not significant • Hypothesis 2 was not supported; there was no significant increase in mean QOL observed from pre- to 24-months post-ITB treatment References 0 20 40 60 80 100 Baseline 6 Months Physical QOL 0 20 40 60 80 100 Baseline 6 Month Psychological QOL 0 20 40 60 80 100 Baseline 6 Month Social Relationship QOL 0 20 40 60 80 100 Baseline 6 Month Environment QOL We would like to thank the Cerebral Palsy International Research Foundation, the Pedal-with-Pete Foundation, the Virginia Horne Henry Fund, the Wisconsin Alumni Research Foundation, and the Spasticity and Movement Disorders Clinic at the Waisman Center at the University of Wisconsin- Madison. Thank you to my research mentor, Dr. Ruth Benedict, for the support and guidance. I’d also like to thank Dr. Travers, my research team, classmates, and family and friends for their support of this project. 1. Albright, A. L., & Ferson, S. S. (2006). Intrathecal baclofen therapy in children. Neurosurgical Focus, 21(2), 1-6. doi: 10.3171/foc.2006.21.2.4 2. Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S. D., Russell, D. J., Swinton, M., & Rosenbaum, P. (2004). The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?. Pediatrics, 114(2), e182-e191. 3. Christensen, D., Van Naarden Braun, K., Doernberg, N. S., Maenner, M. J., Arneson, C. L., Durkin, M. S., Yeargin-Allsopp, M. (2014). Prevalence of cerebral palsy, co-occurring autism spectrum disorders, and motor functioning – Autism and Developmental Disabilities Monitoring Network, USA, 2008. Developmental Medicine & Child Neurology, 56(1), 59-65. doi: 10.1111/dmcn.12268 4. Dehghan, L., Dalvand, H., Feizi, A., Samadi, S. A., & Hosseini, S. A. (2014). Quality of life in mothers of children with cerebral palsy: The role of children’s gross motor function. Journal of Child Health Care. 5. Romeo, D. M., Cioni, M., DiStefano, A., Battaglia, L. R., Costanzo, L., Ricci, D., Mercuri, E. (2010). Quality of Life in Parents of Children with Cerebral Palsy: Is it Influenced by the Child's Behaviour? Neuropediatrics, 41(03), 121-126. doi: 10.1055/s-0030-1262841 6. Walter, M., Altermatt, S., Furrer, C., & Meyer-Heim, A. (2013). Intrathecal baclofen therapy in children with severe spasticity: Outcome and complications. Developmental Neurorehabilitation, 1-7. doi: 10.3109/17518423.2013.827256 Baseline to 6 Months Baseline to 24 Months 0 20 40 60 80 100 Baseline 24 Month Physical QOL 0 20 40 60 80 100 Baseline 24 Months Psychological QOL 0 20 40 60 80 100 Baseline 24 Months Social Relationship QOL 0 20 40 60 80 100 Baseline 24 Month Environmental QOL