Factors associated with changes in the quality of life and family functioning scores of primary caregivers of children and young people with primary brain tumors in Karachi, Pakistan: a prospective cohort study.
Children and young people
Cohort study
Family functioning
Mothers
Pakistan
Primary brain tumor
Primary caregivers
Quality of life
Journal
BMC pediatrics
ISSN: 1471-2431
Titre abrégé: BMC Pediatr
Pays: England
ID NLM: 100967804
Informations de publication
Date de publication:
08 Jun 2024
08 Jun 2024
Historique:
received:
29
03
2024
accepted:
31
05
2024
medline:
9
6
2024
pubmed:
9
6
2024
entrez:
8
6
2024
Statut:
epublish
Résumé
There are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment. This prospective cohort study enrolled CYPs aged 5-21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12. Forty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers' mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP's illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers' QoL and family functioning scores were significantly greater. We found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.
Sections du résumé
BACKGROUND
BACKGROUND
There are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment.
METHODS
METHODS
This prospective cohort study enrolled CYPs aged 5-21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12.
RESULTS
RESULTS
Forty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers' mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP's illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers' QoL and family functioning scores were significantly greater.
CONCLUSION
CONCLUSIONS
We found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.
Identifiants
pubmed: 38851708
doi: 10.1186/s12887-024-04867-z
pii: 10.1186/s12887-024-04867-z
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
389Informations de copyright
© 2024. The Author(s).
Références
Ostrom QT, Gittleman H, Truitt G, Boscia A, Kruchko C, Barnholtz-Sloan JS. CBTRUS statistical report: primary brain and other central nervous system tumors diagnosed in the United States in 2011–2015. Neuro-oncology 2018, 20(suppl_4):iv1-iv86.
Lazarus RS, Folkman S. Stress, appraisal, and coping. Springer publishing company; 1984.
Kazak AE, Barakat LP, Meeske K, Christakis D, Meadows AT, Casey R, Penati B, Stuber ML. Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers. J Consult Clin Psychol. 1997;65(1):120.
pubmed: 9103741
doi: 10.1037/0022-006X.65.1.120
Wallander JL, Varni JW. Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry Allied Disciplines. 1998;39(1):29–46.
doi: 10.1111/1469-7610.00302
Gunn ME, Lähdesmäki T, Malila N, Arola M, Grönroos M, Matomäki J, Lähteenmäki PM. Late morbidity in long-term survivors of childhood brain tumors: a nationwide registry-based study in Finland. Neurooncology. 2015;17(5):747–56.
Klassen AF, Klaassen R, Dix D, Pritchard S, Yanofsky R, O’Donnell M, Scott A, Sung L. Impact of caring for a child with cancer on parents’ health-related quality of life. J Clin Oncol. 2008;26(36):5884–9.
pubmed: 19029424
doi: 10.1200/JCO.2007.15.2835
Buchbinder D, Fortier MA, Osann K, Wilford J, Shen V, Torno L, Sender LS, Parsons SK, Wenzel L. Quality of life among parents of adolescent and young adult brain tumor survivors. Journal of pediatric hematology/oncology 2017, 39(8):579.
Hocking MC, Hobbie WL, Deatrick JA, Hardie TL, Barakat LP. Family functioning mediates the association between neurocognitive functioning and health-related quality of life in young adult survivors of childhood brain tumors. J Adolesc Young Adult Oncol. 2015;4(1):18–25.
pubmed: 25852971
pmcid: 4365506
doi: 10.1089/jayao.2014.0022
Fotiadou M, Barlow JH, Powell LA, Langton H. Optimism and psychological well-being among parents of children with cancer: an exploratory study. Psycho‐Oncology: J Psychol Social Behav Dimensions Cancer. 2008;17(4):401–9.
doi: 10.1002/pon.1257
Hovén E, Anclair M, Samuelsson U, Kogner P, Boman KK. The influence of pediatric cancer diagnosis and illness complication factors on parental distress. J Pediatr Hematol Oncol. 2008;30(11):807–14.
pubmed: 18989157
doi: 10.1097/MPH.0b013e31818a9553
Sloper P. Predictors of distress in parents of children with cancer: a prospective study. J Pediatr Psychol. 2000;25(2):79–91.
pubmed: 10820946
doi: 10.1093/jpepsy/25.2.79
Andersen BL, Shapiro CL, Farrar WB, Crespin T, Wells-DiGregorio S. Psychological responses to cancer recurrence: a controlled prospective study. Cancer. 2005;104(7):1540–7.
pubmed: 16118802
doi: 10.1002/cncr.21309
Canning RD, Harris ES, Kelleher KJ. Factors predicting distress among caregivers to children with chronic medical conditions. J Pediatr Psychol. 1996;21(5):735–49.
pubmed: 8936900
doi: 10.1093/jpepsy/21.5.735
Arora NK, McHorney CA. Patient preferences for medical decision making: who really wants to participate? Med Care 2000:335–41.
Boele FW, Hoeben W, Hilverda K, Lenting J, Calis A-L, Sizoo EM, Collette EH, Heimans JJ, Taphoorn MJ, Reijneveld JC. Enhancing quality of life and mastery of informal caregivers of high-grade glioma patients: a randomized controlled trial. J Neurooncol. 2013;111:303–11.
pubmed: 23212677
doi: 10.1007/s11060-012-1012-3
Olson AL, Dietrich AJ, Prazar G, Hurley J. Brief maternal depression screening at well-child visits. Pediatrics. 2006;118(1):207–16.
pubmed: 16818567
doi: 10.1542/peds.2005-2346
Dellve L, Samuelsson L, Tallborn A, Fasth A, Hallberg LRM. Stress and well-being among parents of children with rare diseases: a prospective intervention study. J Adv Nurs. 2006;53(4):392–402.
pubmed: 16448482
doi: 10.1111/j.1365-2648.2006.03736.x
Schulte F, Russell KB, Cullen P, Embry L, Fay-McClymont T, Johnston D, Rosenberg AR, Sung L. Systematic review and meta‐analysis of health‐related quality of life in pediatric CNS tumor survivors. Pediatr Blood Cancer. 2017;64(8):e26442.
doi: 10.1002/pbc.26442
Litzelman K, Catrine K, Gangnon R, Witt WP. Quality of life among parents of children with cancer or brain tumors: the impact of child characteristics and parental psychosocial factors. Qual Life Res. 2011;20:1261–9.
pubmed: 21287280
pmcid: 3121891
doi: 10.1007/s11136-011-9854-2
Shah NZ, Masroor T, Zahid N, Zahid W, Hassan A, Azam I, Ahmad K, Bhamani SS, Jabbar AA, Asad N. Factors affecting well-being in brain tumor patients: an LMIC perspective. Front Psychol. 2023;14:1117967.
pubmed: 37063536
pmcid: 10102647
doi: 10.3389/fpsyg.2023.1117967
Zahid N, Enam S, Mårtensson T, Azam I, Mushtaq N, Moochhala M, Javed F, Kausar F, Hasan A, Rehman L. Predictors of neurocognition outcomes in children and young people with primary brain tumor presenting to tertiary care hospitals of Karachi, Pakistan: a prospective cohort study. Child’s Nerv Syst. 2024;1:1–13.
Van Belle G. Statistical rules of thumb. Volume 699. Wiley; 2011.
Quast LF, Phillips PC, Li Y, Kazak AE, Barakat LP, Hocking MC. A prospective study of family predictors of health-related quality of life in pediatric brain tumor survivors. Pediatr Blood Cancer. 2018;65(6):e26976.
pubmed: 29350456
pmcid: 5911210
doi: 10.1002/pbc.26976
Penn A, Shortman RI, Lowis SP, Stevens MC, Hunt LP, McCarter RJ, Curran AL, Sharples PM. Child-related determinants of health‐related quality of life in children with brain tumours 1 year after diagnosis. Pediatr Blood Cancer. 2010;55(7):1377–85.
pubmed: 20981692
doi: 10.1002/pbc.22743
Shortman RI, Lowis SP, Penn A, McCarter RJ, Hunt LP, Brown CC, Stevens MC, Curran AL, Sharples PM. Cognitive function in children with brain tumors in the first year after diagnosis compared to healthy matched controls. Pediatr Blood Cancer. 2014;61(3):464–72.
pubmed: 24039108
doi: 10.1002/pbc.24746
Riaz Q, Naeem E, Fadoo Z, Lohano M, Mushtaq N. Intracranial tumors in children: a 10-year review from a single tertiary health-care center. Child’s Nerv Syst. 2019;35:2347–53.
doi: 10.1007/s00381-019-04260-7
Brazier J, Ratcliffe J. Measurement and valuation of health for economic evaluation. International encyclopedia of public health. edn.: Elsevier Inc.; 2017. pp. 586–93.
Warner EL, Kirchhoff AC, Nam GE, Fluchel M. Financial burden of pediatric cancer for patients and their families. J Oncol Pract. 2015;11(1):12–8.
pubmed: 25316026
doi: 10.1200/JOP.2014.001495
McCarthy ML, MacKenzie EJ, Durbin DR, Aitken ME, Jaffe KM, Paidas CN, Slomine BS, Dorsch AM, Berk RA, Christensen JR. The Pediatric Quality of Life Inventory: an evaluation of its reliability and validity for children with traumatic brain injury. Arch Phys Med Rehabil. 2005;86(10):1901–9.
pubmed: 16213229
doi: 10.1016/j.apmr.2005.03.026
Palmer SN, Meeske KA, Katz ER, Burwinkle TM, Varni JW. The PedsQL™ brain tumor module: initial reliability and validity. Pediatr Blood Cancer. 2007;49(3):287–93.
pubmed: 16991131
doi: 10.1002/pbc.21026
Slosson RL, Nicholson C, Hibpshman T. Slosson Intelligence Test, Revised (SIT-R3). Austin, TX: Slosson Education Publications 1991.
Raven J. The Raven progressive matrices tests: their theoretical basis and measurement model. Uses and abuses of Intelligence Studies advancing Spearman and Raven’s quest for non-arbitrary metrics 2008:17–68.
Ahmad R, Khanam SJ, Riaz Z. The Standard Progressive Matrices in Pakistan. Uses and abuses of intelligence: studies advancing Spearman and Raven’s quest for non-arbitrary metrics 2006:404–412.
Wechsler D. WISC-III: Wechsler Intelligence Scale for Children. San Antonio, TX: Psychological Corporation. In.: Harcourt Brace Jovanovich;; 1991.
Wechsler D. Wechsler intelligence scale for children. 1949.
AMBREEN S: Wechsler Intelligence Scale for Children-(WISC-IV): adaptation, translation, and standardization in Pakistan. QUAID-I-AZAM UNIVERSITY ISLAMABAD; 2015.
Wechsler D. Wechsler adult intelligence scale. Arch Clin Neuropsychol 1955.
Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL™ family impact module: preliminary reliability and validity. Health Qual Life Outcomes. 2004;2(1):55.
pubmed: 15450120
pmcid: 521692
doi: 10.1186/1477-7525-2-55
Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL™ family impact module: preliminary reliability and validity. Health Qual Life Outcomes. 2004;2:1–6.
doi: 10.1186/1477-7525-2-55
Peterson CC, Drotar D. Family impact of neurodevelopmental late effects in survivors of pediatric cancer: review of research, clinical evidence, and future directions. Clin Child Psychol Psychiatry. 2006;11(3):349–66.
pubmed: 17080773
doi: 10.1177/1359104506064980
Butler RW, Copeland DR, Fairclough DL, Mulhern RK, Katz ER, Kazak AE, Noll RB, Patel SK, Sahler OJZ. A multicenter, randomized clinical trial of a cognitive remediation program for childhood survivors of a pediatric malignancy. J Consult Clin Psychol. 2008;76(3):367.
pubmed: 18540731
pmcid: 2827251
doi: 10.1037/0022-006X.76.3.367
Hardy KK, Willard VW, Allen TM, Bonner MJ. Working memory training in survivors of pediatric cancer: a randomized pilot study. Psycho-oncology. 2013;22(8):1856–65.
pubmed: 23203754
doi: 10.1002/pon.3222
Lannering B, Marky I, Lundberg A, Olsson E. Long-term sequelae after pediatric brain tumors: their effect on disability and quality of life. Med Pediatr Oncol. 1990;18(4):304–10.
pubmed: 2355890
doi: 10.1002/mpo.2950180410
Zebrack BJ, Gurney JG, Oeffinger K, Whitton J, Packer RJ, Mertens A, Turk N, Castleberry R, Dreyer Z, Robison LL. Psychological outcomes in long-term survivors of childhood brain cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2004;22(6):999–1006.
pubmed: 15020603
doi: 10.1200/JCO.2004.06.148
Ness KK, Mertens AC, Hudson MM, Wall MM, Leisenring WM, Oeffinger KC, Sklar CA, Robison LL, Gurney JG. Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Ann Intern Med. 2005;143(9):639–47.
pubmed: 16263886
doi: 10.7326/0003-4819-143-9-200511010-00007
Fuemmeler BF, Mullins LL, Marx BP. Posttraumatic stress and general distress among parents of children surviving a brain tumor. Children’s Health Care. 2001;30(3):169–82.
doi: 10.1207/S15326888CHC3003_1
Chien L-Y, Lo L-H, Chen C-J, Chen Y-C, Chiang C-C, Chao Y-MY. Quality of life among primary caregivers of Taiwanese children with brain tumor. Cancer Nurs. 2003;26(4):305–11.
pubmed: 12886121
doi: 10.1097/00002820-200308000-00009
Kearney JA, Salley CG, Muriel AC. Standards of psychosocial care for parents of children with cancer. Pediatr Blood Cancer. 2015;62(S5):S632–83.
pubmed: 26700921
pmcid: 5066591
doi: 10.1002/pbc.25761
Musiol K, Bulska W, Brożek P, Oślizło B, Ryzak S, Dubiel J, Sobol-Milejska G. Quality of life in survivors of childhood brain tumour and the association of children’s diseases on quality of their parents life. Psycho‐Oncology. 2019;28(5):1088–95.
pubmed: 30875709
doi: 10.1002/pon.5061
Thurman DJ, Beghi E, Begley CE, Berg AT, Buchhalter JR, Ding D, Hesdorffer DC, Hauser WA, Kazis L, Kobau R. Standards for epidemiologic studies and surveillance of epilepsy. Epilepsia. 2011;52:2–26.
pubmed: 21899536
doi: 10.1111/j.1528-1167.2011.03121.x
Ott D, Siddarth P, Gurbani S, Koh S, Tournay A, Shields WD, Caplan R. Behavioral disorders in pediatric epilepsy: unmet psychiatric need. Epilepsia. 2003;44(4):591–7.
pubmed: 12681010
doi: 10.1046/j.1528-1157.2003.25002.x
Reilly C, Atkinson P, Das K, Chin R, Aylett S, Burch V, Gillberg C, Scott R, Neville B. A population-based study of neurobehavioral comorbidities in children with active epilepsy. Pediatrics. 2014;133(6):e1586–1593.
pubmed: 24864167
doi: 10.1542/peds.2013-3787
Baca CB, Vickrey BG, Caplan R, Vassar SD, Berg AT. Psychiatric and medical comorbidity and quality of life outcomes in childhood-onset epilepsy. Pediatrics. 2011;128(6):e1532–43.
pubmed: 22123895
pmcid: 3387901
doi: 10.1542/peds.2011-0245
Reilly C, Atkinson P, Das KB, Chin RF, Aylett SE, Burch V, Gillberg C, Scott RC, Neville BG. Factors associated with quality of life in active childhood epilepsy: a population-based study. Eur J Pediatr Neurol. 2015;19(3):308–13.
doi: 10.1016/j.ejpn.2014.12.022
Fastenau PS, Shen J, Dunn DW, Austin JK. Academic underachievement among children with epilepsy: proportion exceeding psychometric criteria for learning disability and associated risk factors. J Learn Disabil. 2008;41(3):195–207.
pubmed: 18434287
pmcid: 2748109
doi: 10.1177/0022219408317548
Aguiar BVK, Guerreiro MM, McBrian D, Montenegro MA. Seizure impact on the school attendance in children with epilepsy. Seizure. 2007;16(8):698–702.
pubmed: 17590358
doi: 10.1016/j.seizure.2007.05.013
Yu Z, Shao Q, Hou K, Wang Y, Sun X. The experiences of caregivers of children with epilepsy: a meta-synthesis of qualitative research studies. Front Psychiatry. 2022;13:987892.
pubmed: 36177220
pmcid: 9513543
doi: 10.3389/fpsyt.2022.987892
Lee S-A, Han S-H, Cho Y-J, Kim KT, Kim J-E, Shin DJ, Seo J-G, Kim Y-S, Ryu HU, Lee S-Y. Factors associated with stigma and depressive symptoms in family members of patients with epilepsy. Epilepsy Behav. 2020;110:107129.
pubmed: 32473520
doi: 10.1016/j.yebeh.2020.107129
King-Stephens D, Wheless J, Krogh C, Bettles M, Niemira J, Stolper R, Benitez A, Fournier M, Spalding W, Lu M. Burden of disease in patients with a history of status epilepticus and their caregivers. Epilepsy Behav. 2020;112:107374.
pubmed: 32882626
doi: 10.1016/j.yebeh.2020.107374
Innasimuthu AJ, Jayaraman D, Jeyarani G, Scott JX, Iyengar SK, Subramanian L, Sneha LM, Kovindan BT, Arul J. Quality of life of parents of children with Cancer—Single-Center, prospective cross-sectional study from South India. Indian J Med Pediatr Oncol. 2022;43(03):255–61.
doi: 10.1055/s-0042-1749402
Siddiqui DF, Ashraf MS, Iftikhar S, Belgaumi AF. Predictors of treatment abandonment for patients with pediatric cancer at Indus Children Cancer Hospital, Karachi, Pakistan. Pediatr Blood Cancer. 2018;65(2):e26818.
doi: 10.1002/pbc.26818
Catt SL, Anderson JL, Chalmers AJ, Fallowfield LJ. A UK-wide survey of follow‐up practices for patients with high‐grade glioma treated with radical intent. J Eval Clin Pract. 2011;17(1):1–6.
pubmed: 21143347
doi: 10.1111/j.1365-2753.2009.01292.x
Giovagnoli A, Silvani A, Colombo E, Boiardi A. Facets and determinants of quality of life in patients with recurrent high grade glioma. J Neurol Neurosurg Psychiatry. 2005;76(4):562.
pubmed: 15774446
pmcid: 1739577
doi: 10.1136/jnnp.2004.036186
Sherman D, Fessele KL. Financial support models: a case for use of financial navigators in the oncology setting. Clin J Oncol Nurs. 2019;23(5):14–8.
pubmed: 31538990
doi: 10.1188/19.CJON.S2.14-18
Kline CN, Mueller S. Neurocognitive outcomes in children with brain tumors. Seminars in Neurology: 2020. Thieme Medical; 2020. pp. 315–21.
Brière ME, Scott JG, McNall-Knapp RY, Adams RL. Cognitive outcome in pediatric brain tumor survivors: delayed attention deficit at long‐term follow‐up. Pediatr Blood Cancer. 2008;50(2):337–40.
pubmed: 17458873
doi: 10.1002/pbc.21223