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Erschienen in: Journal of Neurology 10/2018

20.07.2018 | Original Communication

Care-related quality of life in caregivers of children with drug-resistant epilepsy

verfasst von: Puneet Jain, Jhananiee Subendran, Mary Lou Smith, Elysa Widjaja, The PEPSQOL Study Team

Erschienen in: Journal of Neurology | Ausgabe 10/2018

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Abstract

Background

Epilepsy in children negatively impacts on caregiver quality of life (QOL). The study aimed to evaluate the relationships between patient factors [demographics, clinical factors, health-related quality of life (HRQL)], contextual factors (socio-economic factors), caregiver mood, and caregiver QOL, and whether family factors mediate the relationship between patient HRQL and caregiver QOL.

Methods

Children aged 4–18 years with medically intractable epilepsy were enrolled. Patient demographics, clinical data, patient HRQL [measured using Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)], socio-economic factors, caregiver anxiety and depression, and family factors (adaptation, resources and demands) were assessed. Caregiver QOL was measured using CarerQol, which evaluates care-related QOL, incorporating the negative and positive effects of caregiving.

Results

One hundred and eighty-one children were studied. In bivariable regression analysis, higher patient HRQL (QOLCE) (β = 0.54, p < 0.001) and household income (β = 10.49, p = 0.019) were associated with higher caregiver QOL. Higher depression (β = − 2.48, p < 0.001) and anxiety (β = − 2.04, p < 0.001) were associated with lower caregiver QOL. Seizure severity and other socio-economic factors did not influence caregiver QOL (all p > 0.05). In multivariable regression analysis, higher QOLCE (β = 0.21, p = 0.001), lower depression (β = − 1.07, p < 0.001) and lower anxiety (β = − 1.19, p < 0.001) were associated with higher caregiver QOL. Family demands and resources moderated the relationship between patient HRQL and caregiver QOL.

Conclusions

Patient HRQL and caregiver mood were more important correlates of caregiver QOL than seizure severity in medically intractable epilepsy. The findings are significant in delineating variables (caregiver mood and family factors) that are potentially modifiable, and show promise for improving caregiver QOL.
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Literatur
1.
Zurück zum Zitat Jensen MP, Liljenquist KS, Bocell F et al (2017) Life impact of caregiving for severe childhood epilepsy: results of expert panels and caregiver focus groups. Epilepsy Behav 74:135–143CrossRef Jensen MP, Liljenquist KS, Bocell F et al (2017) Life impact of caregiving for severe childhood epilepsy: results of expert panels and caregiver focus groups. Epilepsy Behav 74:135–143CrossRef
2.
Zurück zum Zitat Rodenburg R, Meijer AM, Deković M et al (2005) Family factors and psychopathology in children with epilepsy: a literature review. Epilepsy Behav 6:488–503CrossRef Rodenburg R, Meijer AM, Deković M et al (2005) Family factors and psychopathology in children with epilepsy: a literature review. Epilepsy Behav 6:488–503CrossRef
3.
Zurück zum Zitat Reilly C, Taft C, Edelvik A et al (2017) Health-related quality of life and emotional wellbeing improve in parents after their children have undergone epilepsy surgery—a prospective population-based study. Epilepsy Behav 75:196–202CrossRef Reilly C, Taft C, Edelvik A et al (2017) Health-related quality of life and emotional wellbeing improve in parents after their children have undergone epilepsy surgery—a prospective population-based study. Epilepsy Behav 75:196–202CrossRef
4.
Zurück zum Zitat Reilly C, Taft C, Nelander M et al (2015) Health-related quality of life and emotional well-being in parents of children with epilepsy referred for presurgical evaluation in Sweden. Epilepsy Behav 53:10–14CrossRef Reilly C, Taft C, Nelander M et al (2015) Health-related quality of life and emotional well-being in parents of children with epilepsy referred for presurgical evaluation in Sweden. Epilepsy Behav 53:10–14CrossRef
5.
Zurück zum Zitat Lv R, Wu L, Jin L et al (2009) Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurol Scand 120:335–341CrossRef Lv R, Wu L, Jin L et al (2009) Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurol Scand 120:335–341CrossRef
6.
Zurück zum Zitat Bompori E, Niakas D, Nakou I et al (2014) Comparative study of the health-related quality of life of children with epilepsy and their parents. Epilepsy Behav 41:11–17CrossRef Bompori E, Niakas D, Nakou I et al (2014) Comparative study of the health-related quality of life of children with epilepsy and their parents. Epilepsy Behav 41:11–17CrossRef
7.
Zurück zum Zitat Mori Y, Downs J, Wong K et al (2017) Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life. Orphanet J Rare Dis 19:12:16CrossRef Mori Y, Downs J, Wong K et al (2017) Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life. Orphanet J Rare Dis 19:12:16CrossRef
8.
Zurück zum Zitat Gallop K, Wild D, Verdian L et al (2010) Lennox–Gastaut syndrome (LGS): development of conceptual models of health-related quality of life (HRQL) for caregivers and children. Seizure 19:23–30CrossRef Gallop K, Wild D, Verdian L et al (2010) Lennox–Gastaut syndrome (LGS): development of conceptual models of health-related quality of life (HRQL) for caregivers and children. Seizure 19:23–30CrossRef
9.
Zurück zum Zitat Borusiak P, Bast T, Kluger G et al (2016) A longitudinal, randomized, and prospective study of nocturnal monitoring in children and adolescents with epilepsy: effects on quality of life and sleep. Epilepsy Behav 61:192–198CrossRef Borusiak P, Bast T, Kluger G et al (2016) A longitudinal, randomized, and prospective study of nocturnal monitoring in children and adolescents with epilepsy: effects on quality of life and sleep. Epilepsy Behav 61:192–198CrossRef
10.
Zurück zum Zitat Raina P, O’Donnell M, Schwellnus H et al (2004) Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr 4:1CrossRef Raina P, O’Donnell M, Schwellnus H et al (2004) Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr 4:1CrossRef
11.
Zurück zum Zitat Puka K, Tavares TP, Anderson KK et al (2018) A systematic review of quality of life in parents of children with epilepsy. Epilepsy Behav EB 82:38–45CrossRef Puka K, Tavares TP, Anderson KK et al (2018) A systematic review of quality of life in parents of children with epilepsy. Epilepsy Behav EB 82:38–45CrossRef
12.
Zurück zum Zitat Mendes TP, Crespo CA, Austin JK (2017) Family cohesion, stigma, and quality of life in dyads of children with epilepsy and their parents. J Pediatr Psychol 42:689–699PubMed Mendes TP, Crespo CA, Austin JK (2017) Family cohesion, stigma, and quality of life in dyads of children with epilepsy and their parents. J Pediatr Psychol 42:689–699PubMed
13.
Zurück zum Zitat Puka K, Ferro MA, Anderson KK et al (2018) Health-related quality of life in mothers of children with epilepsy: 10 years after diagnosis. Qual Life Res 27:969–977CrossRef Puka K, Ferro MA, Anderson KK et al (2018) Health-related quality of life in mothers of children with epilepsy: 10 years after diagnosis. Qual Life Res 27:969–977CrossRef
14.
Zurück zum Zitat Conway L, Smith ML, Ferro MA et al (2016) Correlates of health-related quality of life in children with drug resistant epilepsy. Epilepsia 57:1256–1264CrossRef Conway L, Smith ML, Ferro MA et al (2016) Correlates of health-related quality of life in children with drug resistant epilepsy. Epilepsia 57:1256–1264CrossRef
15.
Zurück zum Zitat Harris PA, Taylor R, Thielke R et al (2009) Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42:377–381CrossRef Harris PA, Taylor R, Thielke R et al (2009) Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42:377–381CrossRef
16.
Zurück zum Zitat Wechsler D (2011) Wechsler Abbreviated Scale of Intelligence (WASI) manual. The Psychological Corporation, San Antonio Wechsler D (2011) Wechsler Abbreviated Scale of Intelligence (WASI) manual. The Psychological Corporation, San Antonio
17.
Zurück zum Zitat Wechsler D (2012) Technical and interpretive manual for the wechsler preschool and primary scale of intelligence. The Psychological Corporation, San Antonio Wechsler D (2012) Technical and interpretive manual for the wechsler preschool and primary scale of intelligence. The Psychological Corporation, San Antonio
18.
Zurück zum Zitat Sabaz M, Cairns DR, Lawson JA et al (2000) Validation of a new quality of life measure for children with epilepsy. Epilepsia 41:765–774CrossRef Sabaz M, Cairns DR, Lawson JA et al (2000) Validation of a new quality of life measure for children with epilepsy. Epilepsia 41:765–774CrossRef
19.
Zurück zum Zitat Sabaz M, Lawson JA, Cairns DR et al (2003) Validation of the quality of life in childhood epilepsy questionnaire in American epilepsy patients. Epilepsy Behav 4:680–691CrossRef Sabaz M, Lawson JA, Cairns DR et al (2003) Validation of the quality of life in childhood epilepsy questionnaire in American epilepsy patients. Epilepsy Behav 4:680–691CrossRef
20.
Zurück zum Zitat Bernstein IH, Rush AJ, Trivedi MH et al (2010) Psychometric properties of the Quick Inventory of Depressive Symptomatology in adolescents. Int J Methods Psychiatr Res 19:185–194CrossRef Bernstein IH, Rush AJ, Trivedi MH et al (2010) Psychometric properties of the Quick Inventory of Depressive Symptomatology in adolescents. Int J Methods Psychiatr Res 19:185–194CrossRef
21.
Zurück zum Zitat Spitzer RL, Kroenke K, Williams JBW et al (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166:1092–1097CrossRef Spitzer RL, Kroenke K, Williams JBW et al (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166:1092–1097CrossRef
22.
Zurück zum Zitat Löwe B, Decker O, Müller S et al (2008) Validation and standardization of the Generalized Anxiety Disorder Screener (GAD-7) in the general population. Med Care 46:266–274CrossRef Löwe B, Decker O, Müller S et al (2008) Validation and standardization of the Generalized Anxiety Disorder Screener (GAD-7) in the general population. Med Care 46:266–274CrossRef
23.
Zurück zum Zitat Smilkstein G, Ashworth C, Montano D (1982) Validity and reliability of the family APGAR as a test of family function. J Fam Pract 15:303–311PubMed Smilkstein G, Ashworth C, Montano D (1982) Validity and reliability of the family APGAR as a test of family function. J Fam Pract 15:303–311PubMed
24.
Zurück zum Zitat Smilkstein G (1978) The family APGAR: a proposal for a family function test and its use by physicians. J Fam Pract 6:1231–1239PubMed Smilkstein G (1978) The family APGAR: a proposal for a family function test and its use by physicians. J Fam Pract 6:1231–1239PubMed
25.
Zurück zum Zitat FILE (1996) Family inventory of life events and changes. Family assessment: resiliency, coping and adaptation. Inventories for research and practice. University of Wisconsin Publishers, Madison FILE (1996) Family inventory of life events and changes. Family assessment: resiliency, coping and adaptation. Inventories for research and practice. University of Wisconsin Publishers, Madison
26.
Zurück zum Zitat McCubbin H, Thompson A, McCubbin MFIRM (1996) Family inventory of resources for management. Family assessment: resiliency, coping and adaptation. Inventories for research and practice. University of Wisconsin Publishers, Madison McCubbin H, Thompson A, McCubbin MFIRM (1996) Family inventory of resources for management. Family assessment: resiliency, coping and adaptation. Inventories for research and practice. University of Wisconsin Publishers, Madison
27.
Zurück zum Zitat Brouwer WBF, van Exel NJA, van Gorp B et al (2006) The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res 15:1005–1021CrossRef Brouwer WBF, van Exel NJA, van Gorp B et al (2006) The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res 15:1005–1021CrossRef
28.
Zurück zum Zitat Hoefman RJ, van Exel J, Brouwer WBF (2017) Measuring care-related quality of life of caregivers for use in economic evaluations: CarerQol tariffs for Australia, Germany, Sweden, UK, and US. PharmacoEconomics 35:469–478CrossRef Hoefman RJ, van Exel J, Brouwer WBF (2017) Measuring care-related quality of life of caregivers for use in economic evaluations: CarerQol tariffs for Australia, Germany, Sweden, UK, and US. PharmacoEconomics 35:469–478CrossRef
29.
Zurück zum Zitat Hoefman RJ, van Exel J, Rose JM et al (2014) A discrete choice experiment to obtain a tariff for valuing informal care situations measured with the CarerQol instrument. Med Decis Mak 34:84–96CrossRef Hoefman RJ, van Exel J, Rose JM et al (2014) A discrete choice experiment to obtain a tariff for valuing informal care situations measured with the CarerQol instrument. Med Decis Mak 34:84–96CrossRef
30.
Zurück zum Zitat Hoefman R, Payakachat N, van Exel J et al (2014) Caring for a child with autism spectrum disorder and parents’ quality of life: application of the CarerQol. J Autism Dev Disord 44:1933–1945PubMedPubMedCentral Hoefman R, Payakachat N, van Exel J et al (2014) Caring for a child with autism spectrum disorder and parents’ quality of life: application of the CarerQol. J Autism Dev Disord 44:1933–1945PubMedPubMedCentral
31.
Zurück zum Zitat Bobinac A, van Exel NJA, Rutten FFH et al (2010) Caring for and caring about: disentangling the caregiver effect and the family effect. J Health Econ 29:549–556CrossRef Bobinac A, van Exel NJA, Rutten FFH et al (2010) Caring for and caring about: disentangling the caregiver effect and the family effect. J Health Econ 29:549–556CrossRef
32.
Zurück zum Zitat Fitzgerald C, George S, Somerville R et al (2018) Caregiver burden of parents of young children with cystic fibrosis. J Cyst Fibros 17:125–131CrossRef Fitzgerald C, George S, Somerville R et al (2018) Caregiver burden of parents of young children with cystic fibrosis. J Cyst Fibros 17:125–131CrossRef
33.
Zurück zum Zitat Westphal-Guitti AC, Alonso NB, Migliorini RCVP et al (2007) Quality of life and burden in caregivers of patients with epilepsy. J Neurosci Nurs 39:354–360CrossRef Westphal-Guitti AC, Alonso NB, Migliorini RCVP et al (2007) Quality of life and burden in caregivers of patients with epilepsy. J Neurosci Nurs 39:354–360CrossRef
34.
Zurück zum Zitat van Andel J, Zijlmans M, Fischer K et al (2009) Quality of life of caregivers of patients with intractable epilepsy. Epilepsia 50:1294–1296CrossRef van Andel J, Zijlmans M, Fischer K et al (2009) Quality of life of caregivers of patients with intractable epilepsy. Epilepsia 50:1294–1296CrossRef
35.
Zurück zum Zitat Camfield C, Breau L, Camfield P (2001) Impact of pediatric epilepsy on the family: a new scale for clinical and research use. Epilepsia 42:104–112CrossRef Camfield C, Breau L, Camfield P (2001) Impact of pediatric epilepsy on the family: a new scale for clinical and research use. Epilepsia 42:104–112CrossRef
36.
Zurück zum Zitat Thompson PJ, Upton D (1992) The impact of chronic epilepsy on the family. Seizure 1:43–48CrossRef Thompson PJ, Upton D (1992) The impact of chronic epilepsy on the family. Seizure 1:43–48CrossRef
37.
Zurück zum Zitat Datta SS, Premkumar TS, Fielding S et al (2006) Impact of pediatric epilepsy on Indian families: influence of psychopathology and seizure related variables. Epilepsy Behav 9:145–151CrossRef Datta SS, Premkumar TS, Fielding S et al (2006) Impact of pediatric epilepsy on Indian families: influence of psychopathology and seizure related variables. Epilepsy Behav 9:145–151CrossRef
38.
Zurück zum Zitat Smith G, Wagner J, Andrews J et al (2014) Caregiving in pediatric epilepsy: results of focus groups and implications for research and practice. Epilepsy Behav 34:34–41CrossRef Smith G, Wagner J, Andrews J et al (2014) Caregiving in pediatric epilepsy: results of focus groups and implications for research and practice. Epilepsy Behav 34:34–41CrossRef
39.
Zurück zum Zitat Soria C, Callu D, Viguier D et al (2008) Parental report of cognitive difficulties, quality of life and rehabilitation in children with epilepsy or treated for brain tumour. Dev Neurorehabilitation 11:268–275CrossRef Soria C, Callu D, Viguier D et al (2008) Parental report of cognitive difficulties, quality of life and rehabilitation in children with epilepsy or treated for brain tumour. Dev Neurorehabilitation 11:268–275CrossRef
40.
Zurück zum Zitat Jones C, Reilly C (2016) Parental anxiety in childhood epilepsy: a systematic review. Epilepsia 57:529–537CrossRef Jones C, Reilly C (2016) Parental anxiety in childhood epilepsy: a systematic review. Epilepsia 57:529–537CrossRef
41.
Zurück zum Zitat Ferro MA, Speechley KN (2009) Depressive symptoms among mothers of children with epilepsy: a review of prevalence, associated factors, and impact on children. Epilepsia 50:2344–2354CrossRef Ferro MA, Speechley KN (2009) Depressive symptoms among mothers of children with epilepsy: a review of prevalence, associated factors, and impact on children. Epilepsia 50:2344–2354CrossRef
42.
Zurück zum Zitat Ferro MA, Speechley KN (2012) What about dads? An exploratory analysis of depressive symptoms in paternal primary caregivers of children with epilepsy. Epilepsy Behav 23:90–91CrossRef Ferro MA, Speechley KN (2012) What about dads? An exploratory analysis of depressive symptoms in paternal primary caregivers of children with epilepsy. Epilepsy Behav 23:90–91CrossRef
43.
Zurück zum Zitat Moreira H, Carona C, Silva N et al (2013) Psychological and quality of life outcomes in pediatric populations: a parent-child perspective. J Pediatr 163:1471–1478CrossRef Moreira H, Carona C, Silva N et al (2013) Psychological and quality of life outcomes in pediatric populations: a parent-child perspective. J Pediatr 163:1471–1478CrossRef
44.
Zurück zum Zitat Speechley KN, Ferro MA, Camfield CS et al (2012) Quality of life in children with new-onset epilepsy: a 2-year prospective cohort study. Neurology 79:1548–1555CrossRef Speechley KN, Ferro MA, Camfield CS et al (2012) Quality of life in children with new-onset epilepsy: a 2-year prospective cohort study. Neurology 79:1548–1555CrossRef
Metadaten
Titel
Care-related quality of life in caregivers of children with drug-resistant epilepsy
verfasst von
Puneet Jain
Jhananiee Subendran
Mary Lou Smith
Elysa Widjaja
The PEPSQOL Study Team
Publikationsdatum
20.07.2018
Verlag
Springer Berlin Heidelberg
Erschienen in
Journal of Neurology / Ausgabe 10/2018
Print ISSN: 0340-5354
Elektronische ISSN: 1432-1459
DOI
https://doi.org/10.1007/s00415-018-8979-4

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