Application of Pediatric Quality Of Life Survey For Neurosurgical Conditions Jeffrey S. Raskin, Yohanna Tesfaye, Andrew Jea, Daniel J. Curry, Allison Brayton, Patsy Jones, Thomas J. Luerssen, Sandi Lam Division of Pediatric Neurosurgery, Texas Children s Hospital, Department of Neurosurgery, Baylor College of Medicine, Houston, Texas USA
Conflicts of interest No financial disclosures xxx00.#####.ppt 7/18/2017 7:22:24 AM
Introduction ` Methods Results Discussion
Our job is improving the quality of life, not just delaying death Robin Williams
Introduction Neurosurgical care of the pediatric population subverts mortality from once fatal disease states into morbidity of heterogeneous disease. Little data has been collected on quality of life (QoL) benefits related to neurosurgical conditions from the parent and child perspectives. Identifying trends in QoL parameters will facilitate future counseling and may mold offered therapies.
Methods This is a descriptive study using the Pediatric Quality of Life indicator survey (PedsQL), a validated survey capturing self-reported satisfaction in pediatric patients suffering from chronic conditions Over 24 months we collected over 1400 surveys in 890 encounters from pediatric patients and parents Physical Emotional Social School Psychosocial Diagnoses of Chiari I malformation and tethered cord syndrome Parent and Child Operated and non-operated cases Significance was computed with Student t-tests
Methods Objectives: understand how the PedsQoL metric applies to diagnoses.
Methods Surveys for most prevalent diagnosis include epilepsy represented 64% of the data, Chiari malformation represented 22%, and tethered cord 13%. Non-operative groups had roughly 3% higher total averages than operative patients did across all diagnoses. Highest average postoperative subcategory Epilepsy for emotional function, 71% Chiari malformation for social function, 80% Tethered cord for emotional function, 77%
Average Score (%) Peds QoL Survey Results for Different Diagnnoses: Non-Op 100 90 80 70 60 50 40 30 20 10 0 Physical Emotional Social School Psychosocial Health Summary Physical Health Summary Grand Total Summary Assessed Functioning Tethered Cord Chiari Malformation Epilepsy
Average Score (%) 100 Peds QoL Survey Results for Different Diagnnoses: Post-Op 90 80 70 60 50 40 30 20 10 0 Physical Emotional Social School Psychosocial Health Summary Assessed Functioning Physical Health Summary Grand Total Summary Tethered Cord Chiari Malformation Epilepsy
Average Score (%) Peds QoL Survey Results for Different Diagnnoses 100 90 80 70 60 50 40 30 20 10 0 Physical Emotional Social School Psychosocial Health Summary Physical Health Summary Grand Total Summary Assessed Functioning Tethered Cord Tethered Cord non-op Chiari Malformation Chiari Malformation non-op Epilepsy Epilepsy non-op
Results Table 1: Peds QoL survey responses for children and adults before and after surgery for Chiari 1 Malformation Psycho-social Physical Health Health Summary Summary Physical Average Score (%) Emotional Average Score (%) Social School Average Average Score (%) Score (%) Average Score (%) Average Score (%) Grand Total Average Score (%) n Unoperated (Child) 74 70 85 62 72 74 73 12 Operated (Child 69 74 81 63 73 69 71 27 Unoperated (Parent) 71 74 81 64 73 71 72 17 Operated (Parent) 64 74 76 63 71 64 69 29 Student t-test pre and post child 0.65 0.75 0.43 0.91 0.93 0.65 0.80 Student t-test pre and post parent 0.44 0.88 0.43 0.97 0.77 0.44 0.61
Results Grand Total Average Score (%) Average QoL Values for Patients with Chiari 1 Physical Average Score (%) 90 80 70 60 50 40 30 20 10 0 Emotional Average Score (%) Physical Health Summary Average Score (%) Social Average Score (%) Psycho-social Health Summary Average Score (%) School Average Score (%) Unoperated (Child) Operated (Child Unoperated (Parent) Operated (Parent) Figure 4: Radar graph demonstrating average QoL values for operative and nonoperative groups within the diagnosis cluster Chiari I Malformation.
Results Table 2: Peds QoL survey responses for children and adults before and after surgery for Tethered Cord Syndrome Physical Average Score (%) Emotional Average Score (%) Social School Average Average Score (%) Score (%) Psychosocial Health Summary Average Score (%) Physical Health Summary Average Score (%) Grand Total Averag e Score (%) n Unoperated (Child) 58 72 83 47 67 58 64 7 Operated (Child 73 71 78 70 73 73 73 21 Unoperated (Parent) 76 85 82 77 81 76 79 27 Operated (Parent) 76 81 69 66 72 73 73 25 Student t-test pre and post child 0.15 0.88 0.61 0.01 0.46 0.16 0.23 Student t-test pre and post parent 0.98 0.38 0.03 0.16 0.06 0.70 0.19
Results Average QoL Values for Patients with Tethered Cord Syndrome Grand Total Average Score (%) Physical Average Score (%) 90 80 70 60 50 40 30 20 10 0 Emotional Average Score (%) Physical Health Summary Average Score (%) Social Average Score (%) Psycho-social Health Summary Average Score (%) School Average Score (%) Unoperated (Child) Operated (Child Unoperated (Parent) Operated (Parent) Figure 5: Radar graph demonstrating average QoL values for operative and nonoperative groups within the diagnosis cluster Tethered Cord Syndrome.
Results Pediatric patients with Chiari I malformation did not differ significantly in PedsQL responses from parents for any of the 5 satisfaction scores, independent of whether they received a suboccipital decompression. Postoperative pediatric patients with TCS had significantly higher School average responses than the nonoperative cohort [69%, 47%; 0.011]. Parents of TCS post-operative patients scored their children lower on Social [69%, 82%; 0.033] and Psychosocial [72%, 81%; 0.059] areas than nonoperative cohort.
Discussion There are differences among operated and nonoperated patient s and parent s responses for TCS. There are no differences in the PedsQL for patients with Chiari I malformation. QoL parameters in neurosurgical conditions are largely unmeasured. The PedsQL is a validated tool to evaluate how satisfied pediatric patients and parents of those patients are following neurosurgical care.
Limitations Small individual data size. Heterogeneous diagnoses (e.g. Epilepsy) Operation variability for operated patients.
Summary The PedsQoL provides validated metrics for subjective assessment of patient satisfaction. There is little difference in the reported QoL indicators between operated and non-operated patients. Further exploration of preoperative expectations should be performed prior to surgery. xxx00.#####.ppt 7/18/2017 7:22:31 AM
Further directions Further understanding particularly of high and low scores. Further parse diagnoses and operations to reflect more homogeneous populations. Manage expectations better. xxx00.#####.ppt 7/18/2017 7:22:31 AM
Our job is improving the quality of life, not just delaying death Robin Williams xxx00.#####.ppt 7/18/2017 7:22:31 AM
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