Measures of health-related quality of life outcomes in pediatric neurosurgery: literature review

Transcription

1 Measures of health-related quality of life outcomes in pediatric neurosurgery: literature review Kathryn M. Wagner, Virendra R. Desai, Nisha Gadgil, Jeffrey S. Raskin, Sandi Lam Division of Pediatric Neurosurgery, Texas Children s Hospital, Department of Neurosurgery, Baylor College of Medicine, Houston, Texas USA

2 Conflicts of interest No financial disclosures xxx00.#####.ppt 7/18/2017 7:16:01 AM

3 HRQoL ` Peds HRQoL How to measure HRQoL? Evaluating QoL Measures Specific examples Conclusions xxx00.#####.ppt 7/18/2017 7:16:01 AM

4 Health-Related Quality of Life (HRQoL) Healthcare moving to a pay-for-performance era Cost effectiveness Evidence-based treatment Outcomes measured by objective data (demographics, clinical data, operative data) Outcomes should also include subjective measures like health-related quality of life xxx00.#####.ppt 7/18/2017 7:16:01 AM

5 Health-Related Quality of Life (HRQoL) xxx00.#####.ppt 7/18/2017 7:16:01 AM

6 Health-Related Quality of Life (HRQoL) Engel class outcome measures Patients also suffer from the psychosocial implications of their condition Sexual function? Driving? Swimming/bathing alone? xxx00.#####.ppt 7/18/2017 7:16:01 AM

7 Health-Related Quality of Life (HRQoL) Many scales are regularly used in adults which have been validated across institutions and populations HRQoL tools may help identify patients at risk for social adjustment and competency issues in the future. Many scales are used and modified Standardized, validated instruments for evaluating pediatric HRQoL are lacking xxx00.#####.ppt 7/18/2017 7:16:01 AM

8 HRQoL Peds HRQoL ` How to measure HRQoL? Evaluating QoL Measures Specific examples Conclusions xxx00.#####.ppt 7/18/2017 7:16:02 AM

9 Pediatric HRQoL 46 scales used for pediatric HRQoL from Most general and broad while some are neurosurgery-specific Use in pediatrics has been steadily increasing Used less frequently in pediatric neurosurgery and use is not increasing relative to other areas xxx00.#####.ppt 7/18/2017 7:16:02 AM

10 Pediatric HRQoL No standardization for different clinical settings Literature generally incorporates multiple instruments, often custom-designed and unvalidated Many tools in use today are a subjective measure of outcomes based on parent reporting xxx00.#####.ppt 7/18/2017 7:16:02 AM

11 HRQoL Peds HRQoL How to measure HRQoL? ` Evaluating QoL Measures Specific examples Conclusions xxx00.#####.ppt 7/18/2017 7:16:02 AM

12 General vs Disease-Specific Measures General Results can be compared across demographics or populations Lack the sensitivity to detect disease-specific impairments Disease-specific Detect subtle changes Unique, cannot be compared to other measures xxx00.#####.ppt 7/18/2017 7:16:02 AM

13 How to Measure QoL? No consensus on the definition of quality of life WHO: the individual s perception of their position in life, in the context of culture and value systems in which they live and in relation to their goals, expectations, standards and concerns xxx00.#####.ppt 7/18/2017 7:16:02 AM

14 How to Measure HRQoL? HRQoL with a similarly nebulous definition: a rubric, encompassing various aspects of personal experience, including physical and psychological health, cognitive factors, social role performance, and general life satisfaction xxx00.#####.ppt 7/18/2017 7:16:02 AM

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16 Evaluating QoL Measures Adaptations for quality of life measures Reliability, validity, ease of interpretation and ease of administration Internal reliability Test-retest reliability Inter-rater reliability Responsiveness to change xxx00.#####.ppt 7/18/2017 7:16:04 AM

17 Evaluating QoL Measures Validity Content validity: the instrument samples all the relevant and important domains in question Face validity: patient s perception of the items, and their experience while completing the items Concurrent/criterion validity: how the instrument compares to the gold standard Construct validity: whether the test measures what it is intended to measure xxx00.#####.ppt 7/18/2017 7:16:04 AM

18 Limitations Differences in parents and children s responses Limited availability of measures with components for the child to complete Nature of disease limits ability to respond Many scales exist, but are often customized to the diagnosis and have not been validated across populations and conditions xxx00.#####.ppt 7/18/2017 7:16:04 AM

19 HRQoL Peds HRQoL How to measure HRQoL? Evaluating QoL Measures Specific examples ` Conclusions xxx00.#####.ppt 7/18/2017 7:16:04 AM

20 Epilepsy xxx00.#####.ppt 7/18/2017 7:16:04 AM

21 Quality of Life in Epilepsy (QOLIE) Initially designed for adults, and reliability validated in these patients Adapted for children with good results Initial and abbreviated versions QOLIE 89 QOLIE 31 QOLIE 10 QOLIE-AD-48 xxx00.#####.ppt 7/18/2017 7:16:04 AM

22 Additional tests Epilepsy Surgery Inventory (ESI-55) Designed for children who have had epilepsy surgery 55 questions, 19 epilepsy-specific questions Twelve domains (table) Excess ceiling effect Good validity, reliability unproven Questions are generic, can be applied to many conditions health perceptions energy/fatigue overall quality of life social function emotional well-being cognitive function physical function pain role limitations change in health xxx00.#####.ppt 7/18/2017 7:16:04 AM

23 Additional tests Impact of Childhood Illness Scale Designed for children 6-17 Questions are generic, can be applied to many conditions Quality of Life in Children with Epilepsy Questionnaire (QOLCE) Score 0-100, 76 questions, 16 subscales Sensitive to severe epilepsy Epilepsy and learning disabilities quality of life (ELDQOL) demonstrated strong reliability and validity Impact of Childhood Neurologic Disability Scale (ICND) xxx00.#####.ppt 7/18/2017 7:16:05 AM

24 Tumor xxx00.#####.ppt 7/18/2017 7:16:05 AM

25 Pediatric Functional Assessment of Cancer Therapy Childhood Brain Tumor Survivor (Peds-FACT-BrS) Created to address the lack of an adequate instrument to measure QOL in pediatric brain tumor survivors 34 items, 12 are disease-specific Internal consistency/reliability have been demonstrated in a specific sub-population, much more extensive testing is needed to validate it in other populations xxx00.#####.ppt 7/18/2017 7:16:05 AM

26 PedsQL Brain Tumor module Cognitive problems Generic measure with extensive validation across various diseases 24 items, encompassing 6 domains (Table) Good internal consistency and construct validity has been demonstrated Pain and hurt Movement and balance Procedural anxiety Nausea Worry xxx00.#####.ppt 7/18/2017 7:16:05 AM

27 Cerebral Palsy xxx00.#####.ppt 7/18/2017 7:16:05 AM

28 QoL in CP Outcomes have previously involved spasticity rating scales, tests of gross and fine motor skills, gait analysis Both generic and condition-specific measures have been used to measure quality of life Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) CerebralPalsy Quality of Life child version (CP QOL-Child) DISABKIDS PedsQL 3.0 Cerebral Palsy Module Care and Comfort Hypertonicity Questionnaire (C&CHQ) xxx00.#####.ppt 7/18/2017 7:16:05 AM

29 Spina Bifida xxx00.#####.ppt 7/18/2017 7:16:05 AM

30 Condition-specific measures Designed by Parkin et al Children 5-12, Adolescents Ten domains (table) good internal reliability, test-retest reliability, and construct validity Social Emotional Intellectual Financial Medical Independence Environmental Physical Recreational Vocational xxx00.#####.ppt 7/18/2017 7:16:05 AM

31 Hydrocephalus xxx00.#####.ppt 7/18/2017 7:16:06 AM

32 Condition-specific measures Designed by Kulkarni et al Created from input from pediatric neurosurgeons, nurses, patients and parents Three domains (table) Good test-retest reliability, inter-rater reliability and construct validity Physical Social-emotional Cognitive xxx00.#####.ppt 7/18/2017 7:16:06 AM

33 Spinal Deformities xxx00.#####.ppt 7/18/2017 7:16:06 AM

34 HRQoL Peds HRQoL How to measure HRQoL? Evaluating QoL Measures Specific examples Conclusions ` xxx00.#####.ppt 7/18/2017 7:16:06 AM

35 Condition-specific measures Quality of life profile for spine deformities (QLPSD) 88 questions Directed at adolescents with spinal deformities Scoliosis Quality of Life Index (SQLI) Self reported tool Used to measure HRQoL in adolescent idiopathic scoliosis patients xxx00.#####.ppt 7/18/2017 7:16:06 AM

36 Future Directions Measures which currently exist need further investigation and standardization Pediatric neurosurgery should prioritize the use of HRQoL and implementing its role in patient care Implementing new outcome measures can be challenging, but by increasing use it will soon become as familiar as a GCS or cranial nerve exam xxx00.#####.ppt 7/18/2017 7:16:06 AM

37 References 1. Hansen D, Vedantam A, Briceno V, Lam SK, Luerssen TG, Jea A. Health-related quality of life outcomes and level of evidence in pediatric neurosurgery. J Neurosurg Pediatr. 2016; Skevington, S. M., Lotfy, M., & O Connell, K. A. (2004). The World Health Organization s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial a Report from the WHOQOL Group. Quality of Life Research. 3.WHO. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychol Med, 28(3), Franco, R. A., Rosenfeld, R. M., & Rao, M. (2000). Quality of life for children with obstructive sleep apnea. Otolaryngology--Head and Neck Surgery, 123(1), Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of disease in childhood, 84(3), Ronen, G. M., Streiner, D. L., & Rosenbaum, P. (2003A). Health-related quality of life in childhood epilepsy: Moving beyond seizure control with minimal adverse effects'. Health and Quality of life Outcomes, 1(1), 1. 7.Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Graham, H. K., Mehmet Radji, O., & Boyd, R. (2006). Paediatric quality of life intruments: a review of the impact of the conceptual framework on outcomes.developmental medicine & child neurology, 48(4), Cramer JA, Perrine K, Devinsky O, Meador K. (1996). A brief questionnaire to screen for quality of life in epilepsy: the QOLIE-10. Epilepsia, 37(6): Cramer JA, Westbrook LE, Devinsky O, Perrine K, Glassman MB, Camfield C. Development of the quality of life in epilepsy inventory for adolescents: The QOLIE-AD-48. Epilepsia. 1999; 40(8): doi: /j tb00828.x. 10.Widlrick D, Parker-Fisher S, Morales A. (1996). Quality of life in children with well-controlled epilepsy. Journal of Neuroscience Nursing, 28(3): Leidy NK, Elixhauser A, Rentz AM, et al. Telephone validation of the Quality of Life in Epilepsy Inventory-89 (QOLIE-89). Epilepsia. 1999; 40(1): doi: /j tb01995.x. 12.Devinsky O, Vickrey BG, Cramer J, et al. Development of the quality of life in epilepsy inventory. Epilepsia. 1995; 36(11): doi: /j tb00467.x. 13.Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann B. Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory. Epilepsia. 1998; 39(1): doi: /j tb01278.x. 14.May TW, Pfäfflin M, Cramer J a. Psychometric Properties of the German Translation of the QOLIE-31. Epilepsy Behav. 2001; 2(2): doi: /ebeh Zhao Y, Ding C, Wang Y, Li Z, Zhou Y, Huang Y. Reliability and validity of a Chinese version of the Quality of Life in Epilepsy Inventory (QOLIE-89). Epilepsy Behav. 2007; 11(1): doi: /j.yebeh Beghi E, Niero M, Roncolato M. Validity and reliability of the Italian version of the Quality-of-Life in Epilepsy Inventory (QOLIE-31). Seizure. 2005; 14(7): doi: /j.seizure da Silva TI, Ciconelli RM, Alonso NB, et al. Validity and reliability of the Portuguese version of the quality of life in epilepsy inventory (QOLIE-31) for Brazil. Epilepsy Behav. 2007; 10(2): doi: /j.yebeh Picot MC, Crespel A, Daurès JP, Baldy-Moulinier M, El Hasnaoui A. Psychometric validation of the French version of the quality of life in epilepsy

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